The XMRV Buzz! - the CFS/ XMRV  News Page


CFS Treatment 

XMRV and Chronic fatigue syndrome

Sept 1st

  • The Workshop WEBCAST! - Filfa4 on the Forums pointed out there will be a webcast of the final Q and A session that is billed to last 2 hours! The Q & A sessions are often the most interesting parts of any conference; this one begins on 5:15 EDT on Wednesday, Sept 08th. Check out the link here  Rrr on the Forums followed up with the NIH and learned that all portions of the Workshop will be filmed and the presentations will go up, subject to the presenters permission, on the NIH website 2-3 weeks later so it's concievable we could have most of the Workshop available for viewing. Thanks for Filfa4 and Rrr for being alert and getting us this news.:)


August 31th

  • XMRV Workshop Program is Out - It's a two day workshop. It starts out with basic stuff; where the virus integrates itself into the cell's genome, which types of mice may contain XMRV-like sequences, and then there is a presentation on a 'novel gene product' of XMRV - which means? what - a protein?? In any case it appears to be something new to science which is always interesting.

    In the next session there is a talk on animal 'models', which are animals researchers use to give XMRV to and then study. Animal models are critically important to understanding how pathogens function and its good to see researchers focusing on animal models so early. Dr Bishop will talk on 'Host Restriction Factors' which are factors in our cells that restrict viral replication. These factors may be one reason why XMRV appears to be different in prostate cancer tissues and the blood. Next comes a VERY INTERESTING lecture.

    Dr. Villinger  then talks on why XMRV Induces a Chronic Replicative Infection in Rhesus Macque Tissues and But Not in the Blood". We've been wondering where, if any place, XMRV is replicating? We know it hardly happens in the blood but is there a tissue somewhere (besides the prostate) where it's growing away? Dr. Villinger will tell us where in the bodies of these macaques XMRV has found a home. Is it the nervous system? (Wouldn't THAT be exciting/appalling...) How about the lymph nodes? The blood vessels? These are macaques, not humans, but this presentation could have profound implications.

    The next talk by Dr. Kazak will fit in perfectly here because he will look at different variants in the XPRI receptor that XMRV uses to enter cells. These variants may determine which cells XMRV can get into and cannot. The next day starts out with the prostate cancer series which we will bypass, except to say that Dr. Singh is giving a lecture on pathogenesis. The section on CFS comes next.

    Dr. Mikovits and Dr. Ruscetti chair the section and he (not Dr. Mikovits) will lead off with a talk on subject he was hardly aware of until two years ago - chronic fatigue syndrome. Dr. Hanson is next. Thus far she has the only CFS/XMRV NIH grant that has been funded. It's a full ROI grant which means (a) that she must have had some preliminary data and (b) that data must have been positive - so here we appear to have the third positive XMRV study to appear. We know she is studying Dr. Bell's pediatric patients (or formerly 'pediatric' now middle-aged patients) and that her rather complex study wll look at a variety of immunological and other features.  One interesting question will be if she has blood samples from 25 years ago from these patients.

    Right next to her Dr. Huber will presumably report on her negative study - an interesting juxtaposition indeed. Dr. Lo will report on the Alter/Lo positive finding and then we believe we'll have a second positive study report by none other than Dr. Mikovits herself. This appears to be the Invest in ME/WPI UK study that used an independent lab to replicate the WPI's results. The title of this one is intriguing "the Detection of Infectious XMRV in the blood of ....in the UK". One wonders if the inclusion of the word "infectious' in there could mean anything special about this study?

    The Assay development section will start off by a lecture by a man who's never been able to find any XMRV in patient's blood - Dr. Switzer of the CDC. After the Alter/Lo study and the FDA's statement that 'sample preparation' could've played a role in the inability of the CDC to find XMRV this lecture could be interesting. (Dr. Vernon's test tube comments come to mind)... Could Dr. Switzer tell us something surprising here? aka 'we made a mistake?'.

    Dr. Bagni will represent the WPI as she explains how to produce an antibody test for XMRV then we'll get good news about the development of XMRV immunoassays  for large scale population studies. Finally Dr. Kearney - who may be part of the Blood Working Group will talk on his success in finding XMRV in blood products. (Things are definitely moving forward on the diagnostic front.)

    In the last session on Epidemiology the Bannert lecture will indicate to us that he did not find XMRV but he also shows that the bug can infect blood cells - which sounds that he's replicated a key part of the Science paper (!) but still can't find the virus...We'll have another opportunity for another positive study when Dr. Blomberg talks about his search for XMRV in Sweden. Finally it appears that another member of the Blood Working Group will report multi-laboratory evaluations of different XMRV assays.

    Dr. De Meirleir is believed to have a poster providing the results of another postive study and the identification of an immmunological signature associated with XMRV infection. At this point it appears there may be at least three positive studies and possibly four.

    The 2-day Workshop indicates that Science is marching forward very quickly; indeed at lightspeed compared to what we are used to.  If XMRV wins out this could be just the beginning; the medical research establishment (contrary to our experience) in the US, after all, is vast indeed. Months ago, Dr. Klimas reported that retrovirologists were hungry for something new...Might ME/CFS go from doormat to hot research ticket? That would be something indeed.
  • The Silence that Deafens - how to explain what appears to be a near virtual media blackout on the Alter study in the UK? Several UK residents have reported looking fruitlessly for any mention of a paper that made it to several hundred other media outlets elsewhere. Somehow the story didn't even make it onto the pages of the vaunted BBC. (How does this story make it to Iran, of all places, and NOT the UK?) One expects the Western media to display some independence but it seems that the British media, at this point, is only interested in one kind of story on ME/CFS and that story does not involve pathogens. Yes, they will cover a pathogen story if they can't ignore it (and downplay it) but if they feel that they can ignore it, then it appears that they will. It's amazing (and appalling) from the US side to see an entire country's media en thrall to one belief system regarding CFS and it definitely messes with one's idea of an informed and objective media. What a rough ride UK patients have.....

    As we watch the media in the US we can also see patterns forming. The Wall Street Journal has a journalist who appears to be very interested in CFS and she has made a difference there. The NYT does its generally thorough job and they've been giving XMRV and ME/CFS a real shot throughout. The Chicago Tribune, on the other hand, has focused on negative aspects. It appears that much matters on which journalist gets interested in the subject and what their own particular slant is. The message is- cultivate those reporters if you can.
  • NIH Goes Public on XMRV - The NIH finally threw its hat in the ring on the new XMRV findings. In the NIH Research Matters section the official NIH release starts off with a bang "New research supports the idea that viruses may play a role in chronic fatigue syndrome (CFS), a debilitating disease that affects millions of people nationwide" What a nice sentence that is; it fits in viruses, a debilitating disease and 'millions of people'; they almost make it sound like we have a major problem here....Did Fauci groan when he saw this? Is he starting to wonder how he's going to explain how under his direction the NIAID has basically ignored CFS and it's millions of retroviral infected patients for decades? How he is going to explain his paltry budgets over the past 25 years for the millions of ill patients? One fervently hopes that at some point he'll be pressed at some point to explain just that. The neglect of the ME/CFS community by the federal goverment borders on being criminal and hopefully the bureacrats in charge will be held to account for their apathy and negligence. (Can you see a 60 minutes program lighting these people up? I can).

    In any case the article illustrates that no matter what happens with XMRV, CFS should now be associated in many people's minds as something that's 'debilitating' and common. Overall its a nice little article.



August 28th

  • Whoops! NIAID Steps Forward - It's true that the NIAID has been no friend to CFS...in fact none of the federal agencies could be characterized as 'friends' and I really blasted them in the last buzz post but that's all the more reason acknowledge them when they do shake off their negative mindset and stepforward. I was informed that  it was none other than the NIAID that helped fund Dr. Alter's work. They definitely get two stars for that, and hopefully, over time, we will see much more.
  • Dreambirdie's superb ME/CFS video is on CNN Ireport - please check it out, give it some hits and watch it spread.
  • Hot CFIDSLINK coming up. The next weeks CFIDSLink is reportedly going to feature Q&A's with professionals (including Dr. Alter) about XRMV. One question we know Dr. Alter will be answering is if he found any MLV's in the CDC's samples. If he didn't then either the CDC's 'CFS' group is not just different but amazingly different from the Komaroff's group of CFS patients in the Alter study OR the CDC has a problem with 'sample preparation'. It was Dr. Vernon who pointed out that the CDC's test tubes might not have been right for virus collection. When a virus is as rare as XMRV appears to be in the blood it might not take much to knock out what little is there. What is going on? Maybe by Workshop we'll know....
  • The September 7-8 International XMRV Workshop is going to be a doozy! The CDC will be presenting their lecture on assays just after Dr. Alter's assays found MLV's....THAT will be interesting. Kate Bishop who basically cracked an essential part of the XMRV mystery for Dr. Mikovits will be there. THAT is encouraging. We believe that at least two positive XMRV studies will be reported there and Dr. DeMeirleir will report that he's found distinct immune abnormalities in XMRV infected patients. THAT will be outstanding.  Other researchers will, no doubt, be deep in discussion about MLV's and XMRV and how to piece together all these different. THAT will be intriguing. Dr. Singh, from what I've been told, from someone would know, may have the best XMRV studying going and she's talking as well....and at the OFFER Conference on Sept 11th in Salt Lake City. THAT will be illuminating.

    This is the hot ticket in town! The Workshop filled up quickly and is no longer open but congratulations to those CFS patients who managed to get in (And boo-hoo for us (me!) who didn't)....We look forward to your reports!


    • August 27th

  • Medscape News Praises Alter Study - while being careful to cite issues that need to be cleared up Medscape News turned in a very positive assessment not only of the Alter study but the impact of the study on the field. We learned that the Alter group tested some of the CDC's samples but that they weren't able to provide samples to the CDC themselves because they didn't have enough material.

    Dr. Alter suggested that the different retroviruses the WPI and his group picked up may be due to geographic differences in prevalence and patient selection. "Dr. Alter said the most likely reason for the discrepancy in results is patient selection. Diagnosis of CFS is based on a symptom complex, not a specific disease marker. All patients in the NIH-FDA study met the accepted diagnostic criteria for the syndrome, and most blood samples were from the patient population of a single coauthor, who is a CFS expert, he said. "There may be a geographic difference," Dr. Alter told Medscape Medical News. "In the Northeast, CFS may be due to MLV, and in the West, it may be due to XMRV." which is an interesting idea but doesn't seem likely, at least from this laymen's perspective, to hold.

    It's true that the WPI patients came from doctors across the country, none of which to my knowledge, was in the Northeast. The WPI, however, has found XMRV variants in those patients dating back to the original paper. While those variants were not in the original paper they were used as supporting material for the Science editors who wanted confirmation that the WPI was not looking at a contaminant. The bottom line is that the WPI has apparently known of XMRV variants from the beginning.
  • Canadians - Your XMRV study awaits you! - the CAA reported that Dr. Eleanor Stein at the University of Alberta is starting an XMRV study for people living in Calgary and Edmonton.

    Interested Calgarians are asked to call 403-287-9941 and Edmontonians 780-492-8415. Article in Calgary Sun: http://www.calgarysun.com/news/alberta/2010/08/26/15154261.html

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  • Science Article Charts Shift in Thinking - an article in the presitigous Science journal looked at the Alter paper and found alot that it liked. Stating that "Even skeptics are impressed by how much care the authors of the new study took to ensure accuracy" it was clearly a very solid piece of work - even Dr. Monroe of the CDC agreed to that "The data do seem solid", admits Steve Monroe, director of CDC's Division of High-Consequence Pathogens and Pathology." And he wasn't the only one "It's simply a good paper," adds virologist Reinhard Kurth, former director of the Robert Koch Institute in Berlin. Alter, a widely respected virologist and winner of the Albert Lasker Award for Clinical Medical Research, "clearly knows what he is doing."

    Questions lingered about reconciling the 'new' retroviruses found and the inability to find XMRV, and the disparate results of the other studies, and clearly more work needs to be done to get the scientific community as a whole gets on board but one had the feeling, barring some untoward surprise, that that was a matter of time. With regard to those 'new' retroviruses, Dr. Mikovits reported that the WPI, over time, has found new variants. (In fact, Dr. Mikovits told me they are present in the WPI's patent application.)

    When will the research community get on board - one way or the other? We finally got what appeared to be a solid date: "By Christmas", Dr. Kurth reported - by Christmas they will have come to a consensus.
  • National Cancer Institutue (NCI) Producing XMRV 'Toolkit' - BeesKnees on the Forums reported that the the National Cancer Institute and Science Applications International Corporation (SAIC) are creating an XMRV Toolkit to help study the virus. We heard that the NCI had spent over a million dollars on basic XMRV research and this may be the fruits of their labor. This toolkit, which consists of 'expression plasmids' for all the proteins in XMR, will assist researchers in many ways;  developing antibody test, as a diagnostic tools, developing vaccines and immunotherapy. It should accelerate research greatly....."The development of these XMRV tools is expected to save researchers months in laboratory production time and thousands of dollars in labor costs."

    The development of this tool demonstrates the leadership role the NCI has played in XMRV. It also starkly illustrates how hands off the big retroviral institute at the NIH, the National Institute of Allergy and Infectious Diseases (NIAID) has been. Patients and some researchers have been critical of the CDC's XMRV study but we should all take note of the fact that if it was up to the NIAID, there might be no research at all on XMRV. At least the CDC has devoted some time and money to this issue. The NIAID backed away from ME/CFS long ago and it continues to treat it as it would a pariah disorder. One might ask who the bigger ogre is in this scenario.
  • FDA FAQ's on XMRV - The FAQ's suggest that both the CDC and Dr. Alter are testing each others samples. Dr. Alter did not find XMRV in the CDC samples either but what about those MLV? And what had the CDC found in Dr. Alter's samples? All questions we hope will be answered in that increasingly exciting Sept workshop.
  • Terrible Timing! CDC CFS Job Now Open!  - It took them, what? At least six months, but the CDC has finally put the job posting for the CFS job out but the timing or this is terrible and it suggests that either they've decided about the role XMRV plays in CFS or they just don't care. With scientific consensus on this all important pathogen just a few months away why not wait and be sure to attract the right kind of individual for the job? The posting opened Aug 19th and closes two weeks after that. 


    • August 24th

    • Four Viruses? The Alter Paper Arrives: A Review - I just posted a long review of this complex and fascinating paper, and what, so far as I can figure out, it means.
    • DeMeirleir Reports RedLabs and Researchers Confirm WPI Findings - Dr. DeMeirleir reported XMRV was alive and well in European ME/CFS patients. Unless they are using a different technology than that licensed to them by VIP Dx this was welcome but not startling news, as few expected the virus not to be found in Europle. The most intriguing part of Dr. DeMeirleir's accouncement was that he had identified an immune signature similar to that found in 'symptomatic' HIV patients. There was no telling why that signature had not popped out before in ME/CFS but it could be that it is showing up now because of the  more selective cohort (ie XMRV positive patients). Dr. De Meirleir sounded very hopefull stating "It seems that for the roughly 17 million CFS / ME patients world-wide end to a long ordeal surrounding the recognition of their illness. The development of targeted therapies is already underway, both in Belgium and abroad" He will report his finding at the Sept 7/8 workshop.


    August 23rd

    Media Coverage of the Alter paper, as expected, rapidly followed. For more check out here
    • Business Week
    • New York Times
    • Wall Street Journal
    • New Scientist
    • Washington Post
    • Kitei Paper on Alter Story - doing her due diligence Mindy Kitei at CFS Central not only got a hold of the paper before publication but also interview Dr. Alter, Dr. Komaroff and others. (You can now find the paper here. Check out a commentary on the findings here)

      The surprise of the paper was what Dr. Alter didn't find - "XMRV"! Even more surprising was the fact that his finding of a melange of closely related viruses actually made sense in some ways. One reason that none of the six or so CFS studies have been able to find 'XMRV' may be that the type of XMRV they looked for was different. As Dr. Mikovits reported in "A Different Kind of XMRV"  the reference type for XMRV testing was derived, naturally, from the sample they had on hand which were from prostate cancer patients. Several studies since the publication of the Science paper have indicated, however,  that the makeup of XMRV in prostate cancer tissues very likely differs from that found in the blood cells. That appeared to be due to the APOBEC3 enzyme present in blood cells which swapped out amino acids in the RNA of the virus. Dr. Mikovits talks about this is a video posted shortly after the finding, where she states that it appears that 'a family of murine retroviruses appear to have infected people with ME/CFS.

      It's still a mystery, at least to me, however, how the WPI found XMRV at all since they presumably started searching for it in the blood last year using the material they had on hand -which were reference samples from the prostate. It may be that faulty methodology indeed, still does play a role in the inability of other groups to find this virus. 

      Kitei rKitei reported that Dr. Alter believes his findings confirm the original XMRV findings stating "Viruses tend not to be homogenous,” Alter explained to CFS Central in a telephone interview. “The fact that we didn’t find XMRV doesn’t bother me because we already knew that retroviruses tend to be variable. They mutate a lot, basically. This is true of HIV and HCV [hepatitis C virus]. It’s not one virus. It’s a family of viruses.” Dr. Alter should certainly know - his work on hepatitis viruses that lead to the discovery of two new viruses garnered him the 'Nobel Prize' of Medicine - the Lasker Award. Dr. Alter found no less than four different types of heretofore undiscovered mLV's in CFS. They were named, appropriately, "CFS Type I", "CFS Type II", etc.

      Mutating over time like any good virus should - Dr. Alter was also able to find the pathogens in blood that was fifteen years old and then retest those individuals today. He found the virus present in 7/8 of them in mutated form - which is exactly what one would expect from a virus over tiem.
      According to Kitei, Dr. Alter felt the delay in releasing the study only strengthened the study, stating “There were no changes in the conclusions, but we added data that made the conclusions stronger,” he explained. “For one thing, we did some further work to feel confidant that there was no contamination…. We had hundreds of negative controls, and every assay had negative controls. And then we used an assay from mouse mitochondrial DNA and found that there was no evidence of mouse contamination. We had variation in the viruses we were finding. If there was a contaminant, you’d find one species, not several.”

      Now Dr. Alter will give XMRV its next big test - he will search for it in a wide variety of disorders. The danger is that it is widespread in chronic diseases, which, would negate its importance unless it really is some sort of superbug. Hopefully, it will be found clustered in a series of 'NEID's' such as FM, GWS, MCS, IBS. Now we await the results of the briefing. For more on Mindy's breaking story
    • CFIDS Associations's Take on the Finding

     

    • Alter Paper Released Today at 3:00 pm EDT- Telebriefing Follows - From the official announcement

      Telebriefing by experts from the Food and Drug Administration, the National Institutes of Health and the Centers for Disease Control and Prevention to respond to questions about this study. The paper is currently under embargo until Monday, August 23 at 3:00 p.m., by the Proceedings of the National Academy of Sciences.

      Who:

      • Harvey Alter, M.D., Chief, Clinical Studies and Associate Director for Research, Department of Transfusion Medicine, NIH Clinical Center
      • Shyh-Ching Lo, M.D., Ph.D., Director, Tissue Safety Laboratory Program, Division of Cellular and Gene Therapies and Division of Human Tissues, Office of Cellular, Tissue and Gene Therapies, Food and Drug Administration Food and Drug Administration
      • Celia Witten, M.D., Ph.D., Director, Office of Cellular, Tissue and Gene Therapies, Food and Drug Administration
      • Hira Nakhasi, Ph.D., Director, Division of Emerging and Transfusion Transmitted Diseases, Office of Blood Research and Review, Food and Drug Administration
      • Steve Monroe, Ph.D., Director, Division of High-Consequence Pathogens and Pathology, Centers for Disease Control and Prevention

      When: Monday, August 23, 3:01 p.m. EDT

      How: The initial briefing will be for press only. The NIH has informed us that the briefing should be available to everyone on replay approximately two hours after briefing concludes. For replay, dial 1-866-373-4990 and enter passcode 5711.
    • VIP Dx Announces New Tests - In a nice bit of timing VIP Dx announced a new antibody test for XMRV and its related variants. The related variants item - the fact that more types of human murine related retroviruses are present in ME/CFS- is the second bit of big news we expect the Alter paper to bring. This finding - that a variety of heretofore undetected 'mouse' retroviruses, all closely related to XMRV have infected the human population could, one would imagine, unleash an enormous amount of interest in the scientific community and possibly pave the way for insights into a number of different diseases and/or explain the different subsets in CFS. (If 80% of CFS patients test positive for XMRV then  something will need to explain the subsets within that subset). The case with HIV is possibly quite instructive as different types of HIV result in dramatically difference illness courses with the mortality rate for one form significantly lower than the other.
    • Special Edition of CFIDSLink on XMRV Announcment Due This Afternoon
    • Dr. Peterson on XMRV, Ampligen, antiretrovirals, stem cells and more - Check out this very interesting review by mJoey on the Phoenix Rising Forums of his latest meeting with Dr. Peterson....mJoey got deep into the some important issues with the Doctor who's been at the center of it all.
    • The WPI Opening Ceremony speeches - check out Annette's radiant (and very professional) speech and Andrea's very moving speech. When you check out Andrea's speech look at how strong and assured she looks. When I was at the Awards Dinner at the Reno Conference last year in March I was told she was there with her doctor because of her severe seizures...she has clearly improved dramatically. The research center of the WPI is now named the Mikovits Research Center.
    August 22nd

    • Alter Buzz - the Buzz around town is that the Alter paper is coming out this week and that it will completely confirm the WPI's findings and go further. That, in fact, is what we would expect - each paper should build on the other ones and go further. If the Buzz is correct the blockbuster paper will come out on Tues. Only time will tell; if it is don't be surprised if you see articles in the media appearing the same day. (In fact they may come out first if you're up early enough).
    • Opening the Door to a New Era: the WPI Arrives - check out an article I wrote looking at what Annette and Harvey Whittemore have accomplished and celebrating the opening of the WPI.
    • Best State of the Art Facility' - That was how Dr. Barsky described the 77 million dollar Center for Molecular Medicine which the WPI is housed (along with two other programs). The Whittemore's kicked in a cool $5 million dollars of their own money to get the facility built. There's quite a bit on the WPI on this nice overview of the new building. Check it out here.
    • XMRV in Press -- papers on XMRV continue to pour out. The latest, a 50 plus page tome, described successful efforts to detect antibodies in XMRV infected primates. Interestingly they reported XMRV illicits a 'much less robust' antibody than HIV. Initial antibody levels are high and then decline quickly to basal levels (?) after about 4 months. They believe this is probably due to reduced replication levels as the body gets the infection under control although they did note another study indicated the virus was present in many organs (even if it's not replicating). A similar antibody response occurs in  HTLV infected primates and it may not reflect what happens in  humans.
    • Dr Katz on XMRV, the Big Study, the Elephant in the Room and What the Heck CFS is - if you missed the CAA's webinar on blood issues it turned out to be a very good one with Dr. Katz being an engaging speaker who's had a long-time interest in CFS. Check out an overview here.

     

    August 20th

    • HGRV Debuts - A name change already? Now that is something people with ME/CFS/CFIDS/ME/CFS/EBV Syndrome are familiar with. Things are moving fast at the WPI. Feeling confident that issues about the XMRV's existence have been settled they are building a foundation for the future, part of which involves calling this pathogen by an appropriate name. As Dr. Burrascano pointed out XMRV is a human not a mouse (ditch the M), you can't say its an exogenous virus because it's a uniquely human virus (scratch the x); what it is is a human infectious gamma retrovirus - the first one we know of; ie its an HGRV.....the pronunciation of which is up to you. (These are biologists not poets). From an aesthetic standpoint it only gets worse...the disorders associated with HGRV are HGRADS (Human gamma retrovirus associated disease). So, congratulations - if you tested postive for XMRV you may have an HGRAD.

      The tongue twisting names are not, unsurprisingly, going over well at the Forums. One person suggested it sounded like a rocket launcher from the Soviet Union. Some Forum members have jumped in with their proposals. Human Associated Gamma Retrovirus Disease or HAGRID gets the Harry Pottery character into the picture while being more picturesqe - I feel Hagrid - (haggard), HGIV, HGRV, HGR........

      That the new names will be proposed in a just a few weeks at the XMRV Workshop on Sept 7th - demonstrates again how confident the group is and suggests they may believe enough positive information will be coming out over the next couple of weeks to sway the group. What a turnaround this is from a couple of weeks ago when the CDC, having locked up the Assay presentation at the workshop, appeared to be in drivers seat with XMRV.

      Hold onto your seats, Dr. Burrascano, a member of the Symposium stated "the volume of new and important information about this virus and its disease associations is increasing rapidly".
    • The Lo-CFS Connection - Dr. Alter appeared out of the blue; a major researcher without any apparent connections to ME/CFS he appears to have stepped in at just the right time to, kind of, save the day. But is he really out of the blue? A thread on the Phoenix Rising Forums indicates  that his partner, Dr. Lo, played a major role in mycoplasma research and actually authored a paper on CFS and mycoplasma. His record suggests that he's very good at finding difficult to find bugs. He did not find an association between mycoplasma's and CFS but it may be that he thought at some point a bug was going to show up.


    August 15th

    • Dr. Mikovits Breaks the News on the FDA Paper -Several weeks prior to publication Dr. Mikovits spilled the beans on the FDA XMRV paper, stating in an interview with RGJ.Com, what has seemed to be more and more obvious - that the Alter paper is going to confirm the WPI's findings when it is released. While no one yet had directly said so, the news seemed to be in the air. In an interview in Nevada Newsmaker Annette Whittemore very confidently said several new replication studies will shortly out confirm the WPI's findings and the mood overall seemed very good.

      It's a big day, a huge day for CFS and, of course the WPI. How fitting that the WPI, which has endured six months of skepticismas study after study has failed to find XMRV not only in ME/CFS but in other diseases, was greeted with this news as they cut the ribbons on their new facility. While much work remains to be done the news that the several positive studies are on the way potentially means a new dawn for ME/CFS. The implications of the finding are truly immense - legitimacy, vastly increased funding, new treatment possibilities and an immense, immense weight taken off ME/CFS patients shoulders.

      There was already good news on the treatment front from Andrea Whittemore, who had became dangerously ill after having to go off Ampligen, as she reported on Nevada Newsmakers that she had improved significantly on new treatments linked to XMRV. With the confirmation of XMRV in CFS the drug companies appear to be picking up track right where they left off six months ago when the negative studies appeared. Dr. Lombardi stated that treatment trials could begin at the WPI soon.       Representatives of drug companies and diagnostic laboratories are reportedly among those attending the WPI's Symposium this week. Annette reported that the the WPI is putting together a team of physicians to lead the medical end of the WPI as fast they can and hope to open in medical side of the facility in late Fall.

      Dr. Mikovits also scooped herself on a paper she expected to published at the end of this year that she reported will demonstrate distinct immune abnormalities are present in ME/CFS patients infected with XMRV. This is a major accomplishment because it suggests an XMRV infection could have profound effects on the immune system indicating it is more than a 'passenger virus'. With researchers able to show XMRV is causing distinct immune abnormalities the next step is to show that drugs that remove the virus and recorrect the immune system abnormalities lead to improved health. Three drugs have been able to stop XMRV in the lab and Dr. Lombardi felt many more were potential candidates stating there was alot of 'low-hanging fruit' available on drug company shelves.


    August 14th

    • The ME/CFS Family Prevalence Poll -how does a Family Prevalence poll show up on the XMRV buzz page? Because if XMRV is infectious one would think that CFS or something like it would show up in families. The research thus far hasn't really indicated a strong family connection but we thought we'd do a poll of our own. Thus far our little unscientific poll suggests that ME/CFS does show up quite frequently in the families of some PR Forum members. Of the 50 or so people that have taken the poll 40% have a close family member who's been diagnosed with ME/CFS and an additional 25% have a relative. Another 16% have a relative who has a mysterious fatiguing condition. Only 25% did not have a relative with either ME/CFS or a mysterious fatiguing condition - a very different finding from the few studies that have been done. Check it out and vote here (you must be registered in the Forums to vote)
    • Breakthroughs Happen: A Model for ME/CFS Success - while we're off-topic a bit I would like to promote a new article I did regarding the big Alzheimer's Breakthrough that I believe has repercussion for ME/CFS. XMRV or not - these teams illustrated the way to go in ME/CFS. The nice thing is that something like it may be appears to be getting underway......Check out the article here.
    • The Alter Paper Out Next Week? - Someone who may know reported they believe it will be out next week; that would be on Tuesday.
    • UK Moves Ahead of US on Protecting the Blood Supply! - who would have ever thought that the land of CBT and GET would race ahead of the US in their efforts to protect the blood supply from CFS patients? According to a note received by 'Dancing with the Sandman' the UK will shortly exclude CFS patients as blood donors because they have a relapsing/remitting condition (which could signify a pathogen is present). Are more changes in store for the UK?


    August 13th h

    • Dr. 'Rac' (can we call him  Dr 'Rac' now?) on the Dutch XMRV HIV study - Dr. Racaniello came down on the recent Dutch study that found no XMRV in HIV patients semen. What was his call? Thumbs up or thumbs down? A decided thumbs down with our viral reviewer finding that the study (remarkably enough) provided "little information on possible transmission mechanisms of XMRV."

      How does a study on semen provide 'little information' on XMRV transmission? By centrifuging the samples thus removing some of the potentially virus bearing cells from it. By not looking for 'proviral DNA' which is DNA that has become integrated into the cells genome- which is, of course, what XMRV does as quickly as possible. By not checking if the people with HIV were infected with XMRV in the first place.

      The really interesting thing about Dr. Racaniello's  last suggestion is that he asserts they should have cultured blood samples using LnCaP cells - the precise method the WPI has been calling for for over half a year but which no one has done yet. He's clearly a believer in this technique and noted that while its unusual, he didn't 'see any value' in doing it in any other way.
    • ME Association Taking a Poll on What It's Research Priorities should be - check it out and vote here.
    • Check out a 45 minute radio interview with Hilary Johnson


    August 11th



    August 10th

    • Alter Paper in Press - a couple of days ago I reported that the Alter paper was at the pubulishers. Mindy Kitei at CFS Central has confirmed with the staff of PNAS that the paper is 'in press' which appears to mean that its been accepted and will be published in a future edition. They would not confirm a publication date but PNAS is published weekly. Given the hot topic one would think publication is imminent.
    • Vice President of WPI Mike Hillerby Talks - Mike Hillerby spent almost an hour on KUNR talking about the WPI, XMRV and CFS. It turns out that the WPI has several good spokesman as Mike turned in an engaging and articulate performance. (He even has a good radio voice :)). They went through the history, talked a bit about the difficulties of Dr. Peterson's early years and the orastracism he faced in Incline Village. He noted that CFS was not a psychological disorder but then asked who wouldn't get depressed at some course if you had a unremitting illness with no cause, no treatment, little recognition and little research?

      At one point he and Dan Erwine discussed how the psychological interpretation of the disease had reduced funding for it - something that I disagree with. Psychological disorders get enormous amounts of funding; if CFS was an identified psychological disorder the disease would move into the National Institutes Of Mental Health where it would  surely receive a lot of funding. The funding problem, in my opinion, is that CFS is viewed as a 'nothing', a wastebasket disorder that is impossible to study.  The CFS patients don't trust the definition and neither does the research community - they don't think there's any cheese down the CFS tunnel.

      XMRV Prevalence - XMRV prevalence rates in CFS have held strong at the WPI over time and perhaps have even increased. Mike stated that 80% of well identified CFS patients have tested positive for XMRV. This is considerably higher than the 66% postive rate (if I remember correctly) reported by Dr. Lombardi at VIP Dx some months ago and could reflect either a different patient cohort at the WPI or improved recent testing measures. He also stated, as we've heard before, that XMRV is being found in other neuro-immune diseases

      Phone-ins - In one of the early phone calls a woman who had CFS in high school and had been unable to attend classes for three months reported that after going to Johns Hopkins and following their protocol of a strict schedule and wake up times, an hour of exercise daily and salt tablets that, although it was extremely painful, she recovered completely and had been recovered ever since then. Her story just goes to show how diverse the CFS population is. Many people with CFS, after all, have gone to John Hopkins, tried their protocols yet this is the first positive story that I've heard.

      Scientific Symposium? - apparently the WPI will shortly be holding a Scientific Symposium on XMRV that will include researchers and physicians from around the US. It's apparently an invitation-only event as there's no mention of it in the Events section of the WPI's website. Reports are its being held from 2-4 pm on the 16th.

      Clinic Opening - the building the Institute is part of is going to open on the 21st and the research staff will presumably move in but its going to take some time for the Clinic to open. The Medical Director's position is still open, other staff still need to be hired and Mike felt the clinic would probably not open before Fall or the end of the year. It should be exciting when it does - Mike related how Dr. Peterson and Annette Whittemore got together several years ago to create a place where they could send findings from the bedside right to the research lab and then back to the bedsidel. They envisioned a place where researchers and physicians  were in close communication (ie translational research). It'll be fascinating to see who is picked to fill Dr. Peterson's considerable shoes.

      The Failed Validation Studies - when it came to talking about the failed XMRV studies, Michael was very diplomatic saying simply that they had used different methods, that the types of patients may have been different, that XMRV may have genetic variations in different groups of patients and that the WPI was continuing to reach out to researchers around the world to explain the techniques and provide them with validated positive samples.

      The Future and the Past - what does he see in the future? Alot of complicated work determining who has XMRV, where in the body it's found, what it's viral loads are, how it might be treated, etc. He also sees greatly accelerated progress (a 'bright light at the end of the tunnel'), in both XMRV and CFS itself. If XMRV is validated he expects researchers from major institutions across the US and the world to jump on board. The last year and a half must've been a whirlwind for the WPI: "I don't think any of us" he said, referring to the creators of the WPI "would have thought we would have come as far as we have in this short time"...Neither they nor us - that's for sure. It's been a remarkable ride, indeed, for an Institute that is finally going to really open its doors in the next couple of weeks.



    August 9th
    • Dr. Singh Talks! - Dr. Singh at the University of Utah is involved in one of the most comprehensive XMRV studies in process. Dr. Racaniello had a nice long interview with her about XMRV, prostate cancer and CFS. The CFS portion of the interview starts 22 minutes into the interview. Of course we didn't hear anything about the results of the study but we got a lot closer look at it and several other interesting projects she has on XMRV. A blog on it will appear tomorrow and you can check out a discussion here.
    • A Big Thank You From People with ME/CFS to the WPI - the WPI's grand opening is in a couple of days and Rrrr, who organized the flowers for Dr. Peterson, did it again for Dr. Mikovits, Annette Whittemore and the staff of the WPI. The response was so strong from the Phoenix Rising Forums and elsewhere that she had to stop asking people to donate. Three bouquets of long stemmed roses from ME/CFS patients will greet Dr. Mikovits, Annette Whittemore and the staff as they open the new facility.
    • How to Say Almost Nothing at All - Mindy Kitei's and Mary Schweitzer's Interview with Dr. Stephen Monroe of the CFS - we saw a bureaucrat in full steam in Mindy Kitei's interview with Dr. Monroe. No question was too piercing that it couldn't be turned into an opportunity to state almost nothing. To the question "Does the CDC care that patients have lost confidence in the agency?", Monroe stated the "CDC is deeply committed to reducing the morbidity and societal costs associated with CFS to enable a better quality of life for CFS patients." One wonders if his nose started to grow a bit when he let go with that one. A miniscule and ever reducing budget for  a million plus person disorder, somehow, does not suggest that the CDC is deeply committed to anything regarding chronic fatigue syndrome. Dr. Monroe didn't even attempt to answer a question regarding what the CDC is doing to help the large percentage of CFS patients who do not receive significant benefits from CBT. Mindy and Mary then came up with a real shocker; apparently the CDC was planning to spend the money determining if foster care children were more likely to come down with CFS than non-foster care children. I hadn't heard that but apparently it was on the books. Dr. Monroe said that study has been canceled; one wonders, though, if anything more exemplifies more the rut the CDC has found itself in.

      Dr. Monroe let loose a real hooter when he suggested that the criteria for CFS did not change when the Empirical definition was created. He stated "The CDC uses quantitative assessment tools (eg Empirical Definition) to reproducibly identify those individuals who meet the 1994 international research case definition of CFS. The defining symptoms and criteria for exclusion have not changed." This was despite the CDC's (and other) studies finding that the definition did bring in a new group of patients and excluded some people who had formerly met it. In their last question Mindy and Mary nailed the CDC on inaccuracies in the XMRV paper concerning the Canadian Criteria and the Fukuda criteria and again were  met with a nonanswer.

      One wonders why Dr. Monroe and the CDC went to the trouble? If it was to suggest that they were at least somewhat responsive to the patient community it failed miserably. If you're not going to even attempt to met the questioner on their own ground why do it?  You either end up looking out of touch or uncaring - which is what happened. For me, the interview simply demonstrated why people with CFS place so little faith in the biggest CFS research program going. Better, really - for the CDC - that it had never taken place. Check it out here.


    August 7th

    • The Mikovits-Ruscetti Paper- the two researchers have released an overview of what we know about XMRV in a journal called Future Medicine. They note that a wide array of neurological, autonomic and immune abnormalities are found in both CFS and AIDS; suggesting, of course, that retroviruses tend to produce a lot of strange abnormalities. The fact that so many different things can go wrong in CFS (but usually only in some this groups of CFS patients) has driven the research world crazy. Basically when they see a pattern like that they think its all nonsense but Dr. Mikovits and Dr. Ruscetti suggest that this is what you might expect from a retrovirus.

      It was very nice to see them using myalgic encephalomyelitis/ chronic fatigue syndrome or ME/CFS (as well as CFS) throughout the article - something we we rarely see; they are definitely on the cutting edge there.


    August 6th

    • THE Key Virus? - Reports are that the WPI has tested hundreds of viruses and found that none of them, not HHV6, EBV, CMV or the others, is associated with more than 10% of CFS patients. Only one virus - XMRV, has thus far, has been found by the WPI in the majority of patients. This, of course, suggests that if their finding is right then XMRV is the key player and that it contributes to different opportunistic infections in different people (like that other famous retrovirus, HIV). Annette Whittemore, by the way, is reportedly very confident that the next slew of studies will start to validate the WPI's findings.
    • Ampligen and XMRV - In a recent report Hemispherx stated that, in collaboration with the WPI, they are analyzing the samples gathered during their Phase 3 trials for the FDA. We've heard reports that Ampligen was more helpful in patients with documented XMRV infections than without them but we'll apparently (or rather hopefully) we'll know for sure in the next month as Hemispherx will be presenting its results at the International XMRV Workshop in early September. A positive report won't resolve any of the basic questions about XMRV but it could be helpful. Ampligen is, after all an immunomodulator with antiviral properties; if Ampligen is more successful in XMRV positive patients than XMRV negative patients this could lend some background credence to the idea that XMRV is causing problems in CFS patients. Hemispherx, of course, does not have the best reputation amongst researchers or investors - the research world probably will not really taken note until they have hard, publishable evidence from them.
    • Dr Oz in La La Land on ME/CFS  - Did a flying house hit him in the head? Did he forget to click his heels twice? Whatever his problem according to reports on the Phoenix Rising Forums Dr. Oz appears to be in la-la land with CFS - stating in response to a question from George Stephanopoulos on Good Morning America that green tea with D-Ribose is "one of the things that I think is the easiest solution for a lot of folks who have CFS....". No word on XMRV  in the program but its hard to believe CFS would've shown up on Good Morning America without it - so I snuck it in here. Check out the discussion here to find out where to send your e-mails.


    Aug 4th

    • Striking New Video on XMRV, the CDC and ME/CFS - check out Dreambirdies striking new video on the XMRV and the CDC on the Phoenix Rising Forums
    • 'Where's the Beef'? The WPI and the XMRV? - Ten months later the WPI has yet to receive a cent of federal funding for work on XMRV. In this blog I ask what's going on?
    • New XMRV Grants (Sort of) - a few new grants for XMRV have popped up on the NIH's ProjectReporter site. One is on cancer and gammaretroviruses, the other is on XMRV integration sites. Both are basic science research projects and neither include CFS patients. Sticking true to form thus far the NIH has stirred itself to fund  only one grant on XMRV and CFS.
    • Dr. Mikovits and Dr. Ruscetti Publish - the two key co-authors of the Science paper have published an overview of XMRV and CFS in the Future Science Journal. Check out a nice overview of it from George in the Phoenix Rising Forums here.
    • XMRV Not Found in Mysterious Flu-like Illnesses in Children in France - Nobody but the WPI has yet been able to find XMRV in the blood and this study was no exception. This study looked for XMRV in 'idiopathic' infectious illnesses in children; ie children with flu-likenesses but no identifiable pathogen - an interesting cohort indeed. They found no trace of XMRV but George on the Phoenix Rising Forums noted a number of problems with the study; they looked for a sequence (env) Dr. Ruscetti says is problematic, there were no controls and they didn't attempt to spike a sample with XMRV to ensure that they were able to find it.
    • Alter Paper in Press? - Reports have it that the backup studies on the Alter paper have been completed and that the completed paper is at the Journal and that Dr. Alter and his associated researchers feel certain it will be published (and perhaps soon?).


    Aug 1st

    • Patenting XMRV - The race for the potentially lucrative XMRV patents is on. Thus far three patents have been registered, all by co-authors of the Science paper; Dr. Mikovits et al. has one for measuring XMRV in the serum, Dr. Silverman has one measuring it in the tissues and now in urine and prostate secretions.
    • Patient Antiretroviral Treatment Trial Reports 

      Daffodil on the Phoenix Rising forums reportssome progress after four months on  anti-retrovirals but that she is still very sick and is having problems with depression.

      Jimbob on the Forums       improved a good bit - he was still not nearly healthy - but he reported good improvement during the 5 weeks he was on Raltegavir but then fell apart and had to stop the drug. He was getting it free; he noted that the normal cost per year was $14,000 (!).

      Dr. Deckoff-Jones Reports - Dr. Deckoff-Jones has been in touch with a group of people trying antiretrovirals. She reports that of the 20 people that she knows that have tried the drugs about a third have shown some improvement, a third haven't responded to them (yet?) and about a third couldn't tolerate them. She suggests that many of the people trying antiretrovirals right now - mostly older patients who have been quite ill for a long time - are probably not the kind of people that will respond optimally to them. For herself and her daughter their gains over the past four to half months are holding and perhaps slowly increasing. She reports that her feelings of flulike malaise are completely gone. Energy is better but still a significant problem.

      She notes that AIDS patients generally progress rapidly on antiretrovirals. So what is going on with CFS patients? She notes that AIDS patients are generally given antiretrovirals when their T. helper cells start declining rapidly or when their viral loads get too high. She believes, if I understood her right, that CFS patients are being given drugs long after they've become ill. (Remember that people can carry HIV for long periods of time before they become ill). It may be that the neurodegeneration/inflammation and even autoimmunity established in the body after long periods of XMRV infection  in some CFS patients means they would be expected to improve very slowly - and perhaps not as fully - as AIDS patients.

      In her early blogs Dr. Deckoff-Jones asked why not give antiretrovirals a shot if you're seriously ill? Now, talking to another subset of patients, she suggests that if you are in a 'successful holding pattern' that you 'tread lightly' and 'not rock the boat' until we learn more. After her terrible experience with anti-Lyme treatments (see her blogs) she's plainly wary about some of the treatments doctors prescribe saying that 'sometimes less is more'. There's much more to read in her insightful blog.

      No Miracle Drugs Yet - Anti-retrovirals have not been the miracle drugs once hoped for. Should we have expected them to be? XMRV is not HIV - it does not appear, at least in the blood, to be replicating rapidly - and these antiviral drugs work by turning down the replication rate. (Is it replicating rapidly somewhere else in the body? We just don't know.) Even if retrovirals stop XMRV replication in the lab there is no data on how effective they are at stopping XMRV replication in humans.

      Besides what if replication has little to do with XMRV's effects? What if the simple presence of XMRV in a cell is causing the immune system to overreact? These drugs would be of little help then. Nor do we know what the right combination of drugs will be. Will anti-herpes virus drugs be necessary for some? How about immune modulators like Ampligen? (Hemispherx believes Ampligen will aid anti-retroviral treatment). Finding an optimum combination of drugs will likely take, just as it did with AIDS, years to figure out. While there is certainly a logic to taking anti-retrovirals, at this stage of the game, taking them has always been a crap shoot.  Its a learning experience for everybody. No one should think doctors would get this right right off the bat.
    • IACFS/ME Makes A Statement - the IACFS/ME, the organization of CFS professionals, has been mostly silent on XMRV. Now they have stirred themselves to make a statement on the Alter paper imbroglio - a month or so after it happened. Still, they provide an acute critique of the situation. If the purpose of the "strategic pause" as Dr. Monroe called it was to clear up conflicting results, then why release the CDC paper while the Alter group was still doing more testing? Fred Friedberg, the President of the IACFS/ME, asserts that if the feds were going to go to the trouble they did to hold back the papers then both papers should have been released at the same time and then a forum should have been established for the authors to hash out their differences.

      The Alter paper was reportedly due out in a couple of weeks - which would be about now, however, reports on the Forums are that it will take considerably longer.
    July 29th


    • The Cancer Connection - The 12th International Conference on Malignancies In AIDS that took place in late April just posted abstracts from the conference. (Before we get to that take note that this was the 12th Annual Conference not on AIDS - but on malignancies in AIDS. HIV is, of course, the biggie - besides cancer it causes a host of conditions but HTLV, the other lesser known human infectious retrovirus, is associated with both cancer and neuro-immune disease. Given that it's probably no wonder that Dr. Mikovits thinks in multiple dimensions (and multiple diseases) when she thinks of the third human infectious retrovirus - XMRV).

      Dr. Mikovts, Dr. Ruscetti and Dr. Lombardi co-authored an abstract called "Repeated Detection of Infectious Xenotropic Murine Virus-Related Virus (XMRV) in Human Neoplasia and Neuroimmune Diseases". In it they note that XMRV's close cousins -murine leukemia retroviruses - cause cancer in mice by activating 'oncogenes' (genes that cause cancer) when XMRV inserts itself into the cells genome. They then describe a case in CFS where they believe XMRV insertion resulted in a B-cell lymphoma. (They apparently did this by demonstrating XMRV in this person has inserted itself next to a gene known to cause B-cell lymphomas (?))

      Retroviruses don't necessarily insert themselves in one part of the genome; in different people and in different cells they will insert themselves in different parts of the genome; this case study suggests that XMRV can, at times, insert itself in a particularly dangerous part of a cells genome. Another study suggested that this does not happen often with XMRV. Still, findings like this will definitely up the ante on XMRV and should push more researchers to study the virus. Hopefully the study will be published in the near future. For more on 'insertional mutagenesis.
    • Patient Advocate See's The Wall's Tumbling Down (But A Dark Cloud Gathering As Well) - The Patient Advocate is clearly tied into some of the action at the WPI. He sees alot of positive things occurring in the near future; a positive NIH study to be released soon, a new serology test by the WPI (that hopefully puts the contamination issue to rest), the opening of the WPI in the next few weeks, XMRV being validated. He sees research accelerating, treatment trials on the horizon, etc.

      He also sees a dark cloud forming - Sen. Harry Reid's election (or lack of it) in November. Harry Reid, the Whittemore's biggest champion, is in the fight of his political life in Nevada. Harry Reid is someone we definitely want to stick around. (The PA believes Harry Reid made sure that the Alter paper is going to be released...Who knows?). This is what the PA says about Harry Reid

      "No matter what one thinks of Harry Reid as a politiician, there is one certainty. Harry Reid is the best friend of CFS/ME in the United States government. It is fair to say that without Reid the WPI building would not have been built and that perhaps XMRV itself would not have been discovered. Harry Reid is currently in a close struggle with a Tea Party challenger. Anyone in Nevada who has CFS/ME, or knows anyone with CFS/ME, had better think twice before voting to oust Reid. It was no coincidence that Obama was in Las Vegas last week (campaigning for Harry Reid) on the very day that news arrived that the Alter study would be released soon. One can surmise that Reid and other Nevada representatives were in meetings last week shortly before this with the HHS regarding the absurd "scientific hold" of the NIH study."

      Check out the rest of the blog here
    July 28th

    • Trine Tsouderos on XMRV and CFS (er Judy Mikovits) or "How Not to Speak to a Reporter" - Trine Tsouderos has written another hard-hitting article for the Chicago Tribune purportedly on XMRV/CFS but, like the last one, much of it is really about a researcher she percieves to be over the top - Dr. Mikovits.  After noting that the 'joyous mood' has soured, she writes that in response to the failed studies Dr. Mikovits has accused other researchers of bias, has stated that XMRV could be the worst epidemic in US history, has stated her finding is being ignored, that the government is more interested in the XMRV/prostate connection than the XMRV/CFS connection, and that XMRV is found in disorders such as autism and multiple sclerosis for which there is not  yet published evidence.

      In a particularly damaging statement Dr. Mikovits was reported to state she had to "play the autism card" because the government was neglecting CFS. (If that was the intent -it backfired mightily; appearing at the Autism One conference only cast further doubts on Dr. Mikovits in some quarters, which, of course, casts further doubts, in some quarters on the CFS/XMRV connection; ie it doesn't appear to have done CFS patients any good at all.) Tsouderous notes that while these some of her comments have been greeted by the patient community they have raised eyebrows amongst her peers in the research world.

      Many of Dr. Mikovits statements may very well be true but in the context of  a short newspaper article  that doesn't have the space to flesh them out more they can come off as defensive and, indeed, are the type of juicy comments journalists love to build story lines on. Whether or not Trish Tsouderous should have written this story she was given all the ammunition she needed to write it. In the Chicago Tribune, at least, (and perhaps the LA Times and related newspapers - we shall see) the story is no longer about CFS and XMRV it is about an outspoken, somewhat off-kilter CFS researcher and XMRV; not a positive story line for the CFS community.

      The article also briefly explored whether there were basic problems with the study.  Dr. Coffin, a supporter, conceded that this could be so "Right now it is chaotic...It is not impossible that there is something fundamentally wrong with the initial study. Everything is on the table." Tsouderous then noted another retroviral finding that took 4 years before the error was discovered. There was no answer, however, to Dr. Mikovits and Dr. Lombardi's claim that as long as labs are able to pick up evidence of an immune response to the virus contamination is not feasible. This is the core counter-argument to contamination that no one, publicly at least, has been able to counter.
    • Blood Advisory Panel Speaks - When the Blood Advisory Panel on XMRV speaks people apparently listen.  Amy Dockser Marcus's report at the Wall Street Journal, in fact, simply talked about what the researchers were going to talk about. Intriguingly, she stated that one reason the research is moving is so slowly is that researchers are beginning to wonder whether the virus present in people with CFS is the same one they are studying in the lab. The question whether enzymes found in immune cells in the blood are altering the genomic content of XMRV such that it is different from reference XMRV samples in the prostate, was explored in "A Different Kind of XMRV". Marcus noted that that question will be addressed by the working group as the studies continue.

      Medscape on the Blood Advisory Panel's Report - there is some new news here. The finding that the viruus spreads rapidly through the bodies of primates inoculated with the virus indicates that blood tranmission in humans is probably possible, and that if XMRV is in the blood supply, its going to be transmitted. The primate study found that XMRV hits epithelial prostate cells early and goes on later to infect the T and B cells in the blood. (No word on XMRV's ability to infect nervous system tissue). One new bit of information was Dr. Silverman's report that XMRV is found in the semen and thus theoretically can be transmitted sexually. He noted several possible reasons for the discrepancy between the study reports.

      On a side note the report on the CFS/XMRV connection noted that "In CFS, the evidence has been less: Only 1 study of the 5 that have been done found a link between XMRV and this debilitating disease." What was noteworthy to me was the reference to CFS as 'this debilitating disease' - suggesting that this important medical venue is getting it about the costs of CFS.

      CDC - Demonstrating the uncertainty present within the Working Group, the CDC representative Dr. Hendry, stated that even after using 'ultrasensitive' assays the CDC was unable to find XMRV in CFS and then discounted all of Dr. Silverman's factors - basically suggesting that the search for XMRV in CFS was over. (The CDC essentially stated the same thing in their study but took a softer line on their website - stating more research needed to be done.) Amongst this group of professionals Dr. Hendry appears to have opted for the first approach.  We know the CDC looked for XMRV in CFS before the Science paper was published and was unable to find it and nothing that's happened in the last 9 months has changed their opinion.

      National Cancer Institute - the NCI has reportedly poured over a million dollars into the developing assays for XMRV and it appears to have paid off. Dr. Stuart LeGrice noted that the NCI developed what came to be the gold standard for HIV and he believes they have done the same for XMRV. Medscape reports him saying "The HIV single copy that was developed at the NCI is regarded as the gold standard assay. We now believe that we have an equivalent assay for XMRV." This, of course, would be a huge breakthrough for the field and, if it is validated, should quickly clear up alot of the confusion regarding XMRV. The assay is now being tested in labs across the world in Sweden, Australia, Vietnam, and South Africa. He stated "Developing an assay is one thing, but transferring it to a laboratory where it can be reproduced is clearly important when we are talking about single copy assay. Contamination is a huge problem, and the ability to transfer these reagents is very important". As we've come to appreciate XMRV is apparently not an easy bug to deal with in the lab.

      NIAID - the big center of retrovirus research in the NIH stated.....nothing. The Institute that missed out on the developing the AIDS Assay has preferred to sit on the fence with XMRV ceding ground, once again, to the NCI. Friends matter in science, as they do everywhere. The NCI is involved because Dr. Mikovits and the Ruscetti's are involved and the Institute has reportedly poured an enormous amount of money into XMRV over the last year. If XMRV turns out to be a quirky virus it will only be understood because a group like the NCI put enough money into it to figure it out. The CDC says it's over. Dr. Le Grice suggests they've hardly started. It's our luck that this time we do have an Institute willing to dig deeply into this virus. They may very well save XMRV's bacon in the long run.
    • Check out a Patient Report on the XMRV Blood Product's Advisory Committee's talk here.
    • Ten XMRV Resources for CFS - Jody Smith of EmpowHer highlights 10 XMRV resources for CFS on her latest blog
    • The (Altered?) Alter Paper Out Soon - in a reply to letter to the NIH expressing concern about the withdrawl of the Alter paper, Vivian Pinn, director of the Office of Research For Women's Health (ORWH), which is responsible for ME/CFS research at the NIH, stated that they expect publication soon.  "As typically occurs in the process of publishing scientific findings, the authors are presently addressing issues raised during the peer review of the manuscript and expect publication soon."  Other studies not associated with the NIH/FDA are purportedly in the pipeline, including one reportedly that has positive findings.
    July 24th

    • Dr. Holtorf Queries ME/CFS Community: How are Antiretroviral Treatments Working? - Dr. Holtorf, a prominent ME/CFS physician in Southern California, has found that most of the patients in his practice who test positive for XMRV also test positive for other pathogens such as EBV, HHV6 and Lyme. (This does bring up the cohort question again - is XMRV mostly found in immune whacked out, pathogen ridden patients?). If you'd like to help answer Dr. Holtorf's question please do it on this thread. (If you are a Forum member you can also PM him).
    • WPI Opening in Less than a Month! - With all the buzz about XMRV we've missed the fact that construction is almost complete and the WPI is about to open! The only University ME/CFS Treatment and Research Institute in the US, WPI is a testament to Annette and Harvey Whittemore's persistence and vision, and a landmark achievement for chronic fatigue syndrome. The facility will be open Aug 21st from 10-12am for viewing. Find out more here.
    • Dr. Teitelbaum On XMRV- Dr. Teitelbaum gives his view of the XMRV situation in a blog on Psychology Today. He notes that other mysterious mostly female disorders of that past such as MS encountered the same difficulties from a mostly patriarchal medical establishment that CFS is encountering now. He states that the 'absence of evidence' in some studies with XMRV is not the same as the 'evidence of absence' as he believes the wrong techniques were used. For more.


    July 23rd

    • International XMRV Workshop Lineup - Lineups can tell you a lot. The lineups tell you who's in and who's out. I remember a CDC lecture at the Reno conference; it was a nothing lecture but there it was in prime time. Why? Probably because the CDC had to be given some space.

      Dr. Mikovits is not speaking - despite the fact that it was her and Dr. Lombardi's paper that ultimately made this conference possible. Is this a snub to Dr. Mikovits? Certainly it could construed as such. It may very well reflect her outspokennes on behalf of CFS patients. The most disturbing aspect of the Workshop, however, may not be that Dr. Mikovits is not speaking but that William Switzer of the CDC is giving a presentation on assays for XMRV. Still, despite the WPI's total absence from the lineup, the Science paper is well represented in the conference, however, and the lineup overall is quite strong.

      The organizing committee       had Dr. Coffin, Dr. Silverman and Dr. Grice from the National Cancer Institute on it - all people who would be happy to the Science papers findings validated.  The Scientific Committee contains a wide swath of researchers from Dr. Bannert to Dr. McClure to Dr. Mikovits and Dr. Vernon. Here is the lineup.

      • Dr. Kate Bishop, NIMR, London, UK - Host Restriction Factors-       Dr. Bishop was the co-author of what Dr. Mikovits believes is one of the most important papers in the field. Hers and another paper indicated that enzymes in T and B cells in the blood are able to alter XMRV's amino acid makeup, thus rendering it unable to replicate in those cells. Dr. Mikovits believes the altered makeup of these cells is obscuring researchers ability to find XMRV.
      • Dr. Sam Chow, UCLA, Los Angeles, USA –Viral Integration - where XMRV integrates itself into the DNA of cells can have a huge effect on how pathogenic it is. XMRV's murine leukemia retrovirus cousins integrate themselves next to and then turn on genes that can cause cancer - causing cancer in mice. He is studying to see if the same is true in XMRV.
      • Dr. John Coffin, Tufts University, Boston, USA –Basic Virology
      • (Keynote lecture) Dr. Eric Klein, Cleveland Clinic, Cleveland, USA –Prostate Cancer - why the 'Keynote Lecture' is on prostate cancer is beyond me. The finding of XMRV in cells near prostate cancer tissues spurred little research; it was the Science paper on XMRV in CFS and healthy controls that got the research world humming. Maybe next conference Dr. Mikovits will give the keynote lecture.
      • Dr. Robert Silverman, Cleveland Clinic, Cleveland, USA –Animal Models - finding an animal model they can use to study this virus is, of course, a vital part of learning about it.
      • Dr. Ila Singh, University of Utah, Salt Lake City, USA –Pathogenesis - a hot topic for the Dr. from Utah. Dr. Singh is currently engaged with Dr. Bateman and Dr. Light on an XMRV/CFS study....We hear the results are in.....
      • William Switzer, CDC, Atlanta, USA –Assay Development - This is the 'problem lecture'.  William Switzer (who is apparently not a doctor, never having earned his Ph.D), was never able to find XMRV in the WPI's samples for the CDC. Since finding XMRV is the KEY QUESTION at the moment this is easily the most important lecture for the CFS community. He will be laying out the guidelines for finding XMRV! An alternative would have been to have Dr. Bagni from the WPI, who is actually able to find the virus. (yes, she is real Dr.)  Or did they feel obligated to have someone from the CDC on board?
      • Dr. Frank Ruscetti, National Cancer Institute, Frederick, USA –Chronic Fatigue Syndrome  - if they're going to have someone speak on CFS it may be better to have Dr. Ruscetti, with his 240 publications and renown in the field, to do it than Judy Mikovits with her 40 or 50 or so publications. despite the fact that he knows much less about the subject, because they will listen more closely to him. I would think he is probably http://www.facebook.com/notes/xmrv-global-action/1st-international-workshop-on-xmrv-pathogenesis-clinical-and-public-health-impli/421411181796 the most distinguished researcher to ever speak for us.
      • Dr. Ellen Sparger, University of California, Davis, USA –Vaccine Development - are they already thinking about vaccines seriously or are they just covering all the bases?

      XMRV Global Action is organizing a drive to communicate the patients community's displeasure at Dr. Mikovits not giving a lecture at the Workshop. Check out a discussion here.
    July 21st
    • Dr. Goff Talks - Dr. Goff talks with Dr. Kathy Miller on Sound Medicine in an audio clip. He emphasized that researchers have been working on XMRV's close relatives (the murine retroviruses) since the seventies so there a wide body of knowledge on this general type of retroviruses. The most pathogenic aspect of these retroviruses is their ability to insert themselves in places in the DNA that end up turning on genes that cause cancer. (That has not been found yet in XMRV).

      Getting to CFS at the end of the clip he called the association with CFS 'very exciting' and said it was a tentative correlation but then stated he still felt it was 'very exciting'. (Two 'very exciting's in two sentences.....) He then made a very strong statement about the possible link between XMRV and ME/CFS saying "this is the kind of disease that a retrovirus like this might cause". (Contrast that with Dr. Reeves, Dr. Wessely, Dr. White and Dr. Lloyd statements that ME/CFS is NOT the type of disease that a retrovirus would cause) and then followed up with 'we could easily imagine it could be the cause of the symptomology of this chronic fatigue syndrome". Then he kicked the door wide open stating "I think in the grand scheme of things there's the potential that alot of diseases that we don't understand will ultimately be attributed to viral infections. This would be one of the most exciting and clear cases if it comes to pass". Whew!

      Did I miss something in his earlier statements or does he sound alot more positive about XMRV than before? It's always easy to read too much into these short interviews but one has to ask oneself if something has gotten our rather cautious retroviral expert a bit more excited on the future of XMRV and CFS. Dr. Goff is a professor at Columbia University.... there is an XMRV study going on there...(?)
    • The (Almost) Year of XMRV- How long has it been since the Science Paper kicked off all the excitement?  According to the Countup Timer to your left it's been 271 days - almost exactly 3/4's of a year. This will indeed be The Year of XMRV. 


    July 20th

    • FDA Speaks - the FDA will be communicating its findings to the Blood Products Advisory Committee on Monday. They will be reporting on the progress of the Blood Safety Working Groups efforts including "ongoing validation studies of XMRV panels, updates of research efforts on test/panel development and other studies". This appears to be the biggest federal effort to understand XMRV. It involves six labs (two at the FDA), the WPI, BSRI (used in the CDC study), the CDC and a National Cancer Institute lab. (Note no one from the National Institute Of Allergy and Infectious Diseases (NIAID) is involved. The FDA, of course, is the home of Dr. Alter - whose paper, reportedly, will be published soon. We should get some information on how this important study is progressing, and, who knows - possibly some information on the Alter paper. Dr. Mikovits, reportedly, will attend. She told me that the completion of the studies is several months away.
    • XMRV Testing in Europe Now Available - RedLabs in Belgium has licensed the proprietary XMRV test from the WP technologies, a subsidiary of the Whittemore Peterson Institute. They are offering the co-culture test. In this test the blood sample is putting contact with a cell in which XMRV readily grows. (XMRV does not appear to be able to replicate much, if at all, in the immune cells in the blood. In the co-culture test the immune cells gathered from your blood are put in contact probably with a LNCap cell in which XMRV replicates. After whatever XMRV is present grows for a couple of days PCR or Western blot are used to search for it. A serology test is forthcoming.


    July 19th

    • Weirdness in the UK? - Somehow Dr. McClure, despite not knowing an ME/CFS patient from a hole in the ground before XMRV showed up, and despite vowing not to have anything more to do with such a fractitious bunch of patients, has become the most public UK reviewer of the CFS/XMRV question. In her latest paper - published in Expert Reviews of Molecular Diagnostics - she provides her overview of the situation. She notes the differences and similarities between some of the studies, notes that viruses could be a cause of CFS but then skewers the WPI with this sentence "Only the study from the Whittemore Peterson Institute [1] was able to detect XMRV sequences following single-round PCR, indicating that copies of the XMRV genome were not in short supply. All the others found it necessary to employ a nested PCR, a modification of the standard reaction designed to enhance sensitivity and specificity." (In nested PCR you do two 'runs'; the first one is designed to pick up signs of the virus - the second one is designed to amplify those 'signs'. According to Dr. McClure, XMRV was so 'present' in the blood of the WPI samples that further PCR work was unnecessary. This, of course, is greatly at odds with Dr. Mikovits repeated statements that XMRV is not only rare but hard to find.

      Megan on the Phoenix Rising Forums, however, pointed out that the Science article states  "we isolated nucleic acids from PBMCs and assayed the samples for XMRV gag sequences by nested polymerase chain reaction (PCR) (5, 6). Of the 101 CFS samples analyzed, 68 (67%) contained XMRV gag sequence." The supporting material section of the Science papers states "To avoid potential problems with laboratory DNA contamination, nested PCR was performed with separate reagents in a separate laboratory room designated to be free of high copy amplicon or plasmid DNA" . It seems impossible to reconcile Dr. McClure statement with these statements making one wonder if Dr. McClure simply made an mistake of enormous proportions (?)
    • XMRV Studies Outlineddd -Neuroskeptic is, well, a skeptic, but this UK neuroscientist has done a great job at outlining many of the important features (types of patients used, types of tests, etc) of the XMRV studies to date. If you want a handy way to compare central features of the studies check out 'The Case of the Missing Retrovirus'


    July 18th

    • Cleveland Clinic Back Into the XMRV Fray Again? FernRhizome on the Phoenix Rising Forums reports that a doctor told her, during a recent trip to the Cleveland Clinic, that they hope to start a new study on XMRV and CFS in a couple of months. We don't know what this study is about but this appears to be particularly good news for XMRV, because the Cleveland Clinic's Dr. Silverman was co-author of the Science paper which, of course, has come under attack. One would presume that no new study would be underway until any issues Dr. Silverman had with XMRV (if any) were resolved. Apparently the Cleveland Clinic is confident about XMRV and moving forward.
    • XMRV Journalist Explored - Amy Dockser Marcus has been leading the way (sometimes alone) on XMRV and CFS for the Wall Street Journal and has broken several important stories. Now, the Patient Advocate, takes a deeper look at Amy and is very impressed. Check out our best connection to a major mediat outlet here.


    July 16th

    XMRV CFIDS Assocation Webinar - Dr. Racaniello and Dr. Bateman talked XMRV (mostly) at the CFID'S Association Webinar on Wednesday.

    DR. RACANIELLO gave us a bird's eye of retroviruses. Right now there are two models for human infectious retroviruses; HIV, which replicates madly in immune cells and sends millions of virions into the blood to infect more cells and HTLV-1, which does not replicate much and does it's damage by turning on bad genes in the cells it is found in (sometimes turning them cancerous).

    He noted that XMRV, at this point, seems more HTLV-like - it's present in small numbers in the blood and doesn't appear to be replicating much.

    (This could be misleading, however. XMRV could be replicating madly in some other part of the body. We know that the immune cells contain APOBEC3 enzymes that 'edit' XMRV sequences - thus largely shutting it's replication down but that prostate cells do not contain this enzyme allowing XMRV to replicate in them. Primate studies of XMRV indicate that XMRV infects many cells - it uses a receptor commmonly found on cells to enter them - and that, upon infection it spreads rapidly throughout the body. It could be flourishing in areas of the body that have not been studied yet).

    (XMRV, then, could look like HTLV-1 in the blood but like HIV elsewhere.) This is an important question because its mode of action determines how easy it is to treat. It took years to learn how to treat HIV but eventually, for those able to get the drugs, it's eminently treatable because the stages of the replicative process give researchers different shots at it. You don't need to kill HIV to get better - you just need to stop it from replicating.

    HTLV-1, on the other hand, effects the body simply by being present in the cell because it appears to turn on genes in the cell that can cause the cell to become cancerous. Stopping this type of virus presumably requires killing all the cells it is present in, which is very difficult to do.

    (One study that looked at XMRV's effects on genes in the cell did not find found that it inserted in areas of the genome where it could turn on 'oncogenes'; ie genes that turn cells cancerous. XMRV, on the other hand, could trigger an immune response in some individuals simply by being in the cell. Or, as noted earlier, XMRV could be acting like HIV in a different part of the body - which is the preferable scenario, oddly enough, treatment wise.)

    Why the varying study results? Dr. Racaniello laid out four possible reasons and emphasized the last; patient selection/geographic differences in viral prevalence/ sequence differences in viruses in different regions and the lack of standardized testing. He noted that, with regards culturing the virus for PCR, that that was not done in the original Science paper and that the validation studies have, in general, followed the approach taken in that paper. If culturing is necessary to find the virus via PCR he urged WPI researchers to publish that information.

    Time - He also noted that finding the correct treatment takes time. HIV was isolated in 1984. It took about a year to develop the first antibody test. AZT was not discovered until 1989 and the HAART therapy that has proved so effective became available in 1995, after over ten years of intense scientific effort. (Dr. Klimas and others believe that the process could be sped up significantly with XMRV)

    DR. BATEMAN - Dr. Racaniello was clearly comfortable at the mike in a kind of low key way. Dr. Bateman, on the other hand seemed almost effervescent in comparison. She's not always so enthusiastic but for whatever reason she seemed to be enjoying herself immensely this time. She is deeply involved in the Light/Singh study and hoped to be able to provide some information on it by now, but alas, could not. Her talk, however, was very engaging.

    No 'True CFS' At the Clinic - Dr. Bateman is known for her careful analysis of her CFS and FM and idiopathic fatigue patients and she demonstrated her ability to differentiate different types of patients in in spades in her talk. Knowing that stating so was going to tick off some people she declared that there is no 'true CFS' - that what we have, at the moment, are a bunch of educated guesses.

    Interestingly she noted that the broad range of patients she sees at her 'Fatigue Consultation Clinic' fit the (dreaded) Empirical Definition more than anything else; that is, she sees a lot of different patients and some of them fit the Fukuda criteria and some fit the Canadian Consensus Criteria but all of them fit the Empirical Definition. These are the broad range of 'idiopathic fatigue' patients that doctors see. They are all sick, they have all presumably seen many doctors in their search for an answer. These are the 4 million or so really fatigued people in the US that the medical profession simply does not have an answer for. (If the CDC and Dr. Jason's studies are correct then about 50% of them have not seen a doctor for their problems; that leaves about 2 million people in in the US who have seen a doctor for their condition; most of whom have probably gotten no relief).

    Dr. Bateman did note that the Empirical Definition does appear to allow in more depressed patients. She was speaking as a clinician not a researcher and she did not endorse the Empirical Definition as a study tool.

    (As an aside, the Empirical definition casts a wide net and it does, as Dr. Bateman indicated, it may very well pick up the broad class of patients with mysterious fatigue that doctors see at the office. As such it could be an effective way to find these people and then break them up into their constituent subsets. Except for one study the CDC, however, never chose to attempt to attempt to do that in a meaningful way - instead, they simply proclaimed that they were all just CFS patients. Not attempting to subset these patients, was, as you'll see as you follow Dr. Bateman, a huge missed opportunity. Then, again, the CDC hasn't been particularly interested in ME/CFS physicians opinions.)  

    Check out the different types of 'CFS patients' who end up at her office.

    • The In-betweeners - these are people in the early stages of multiple sclerosis, autoimmune diseases, neurologic conditions, etc. who don't quite fit the criteria for those diseases but get shoved into the CFS basket until they do.
    • The Misdiagnosed - these are people who have a condition that physicians have missed. She described one woman in her late 60s with horrible fatigue and exercise intolerance who was suffering from coronary artery disease and having a bad reaction to Cymbalta.

    • The Complex CFS Cases - these are people who have CFS but also have a host of other problems - which make it difficult to tell what is causing what. She related a disturbing story of a skinny 15-year-old who returned to her office several decades later, severely obese, with chronic dental and other infections, poorly controlled diabetes and sleep apnea. She asked - should this person, with all her problems, be in a CFS study?

    • The fluey, pathogen ridden, immune system blasted subset - The original definition of CFS in the US, the Holmes definition, focused on the sudden onset, flulike symptom, natural killer cell reduced group. She noted that this group in appears to have different gene expression findings than the other groups. Is this true CFS?

    • Postexertional Malaise Group - the above group may sound like CFS but, if Dr. Bateman was to chose any group to represent CFS, she would choose the group of people (presumably without another comorbid conditions like diabetes) that suffer relapses after exercise.

    • Cognitively Challenged Group - is cognitive dysfunction required to meet the definition of chronic fatigue syndrome? Some people think so and some people don't. This is not a prominent feature for everyone.
    The Onset Question - And what about onset? Dr. Bateman noted that there are several types of onset
    • EBV (infectious mononucleosis) during Adolescence onset group appears to be different from other groups. They tend to have postural orthostatic tachycardia syndrome (heart races upon standing), headache and sleep disorders but not as much cognitive dysfunction and appear, if I heard her right, to recover better than other groups.

    • The sudden onset cases in middle age group, on the other hand, don't have as much POTS and are more difficult to treat.

    • The Stepwise Onset - the stepwise onset; people who are in fragile health and slowly, through a series of infections or other problems lose more and more ground until they have CFS.


      • She didn't mention the gradual onset (in otherwise good health) group. I am a member of that group; my health was superb at the time, my onset was not acute but it wasn't that gradual either - a matter of a few months, as I remember. It would not be that difficult to delineate these groups out, and, in fact, in the Patient Data Repository program that we're working on, we're going to try and do that.
    The Positive Effects of Controversy - Dr. Mikovits also outlined how all the controversy over XMRV has helped XMRV research and chronic fatigue syndrome in general.
    • Every Paper Gets Better - everytime a new paper comes out and the research groups studying XMRV feel compelled to 'raise the bar'. It's was clear that she and her co-researchers in the Utah XMRV study will attempts to make their study stronger and more comprehensive than the studies that have gone before it.
    • An Inadequate Research Definition Gets It's Day in the Sun - the broad research community finally takes a look at a a basic question that, 25 years later, is still unanswered: Just What Is CFS?
    • Chronic Fatigue Syndrome is a hot topic. XMRV has dragged ME/CFS from being a niche topic that few researchers knew anything about to being in the spotlight. Researchers, doctors and public officials are finally learning a little something about CFS and some of them are getting engaged. She talked about a microbiologist helping out in the study who ended up spending days in her clinic just learning about the patients. Dr. Mikovits said that she one day turned to her and said "We have to help these people"!

      Indeed that has not been an uncommon reaction amongst professionals who, for whatever reason, get close to CFS patients. Stacey Stevens at the Univ. Of Pacific, reports that her students there love to learn about ME/CFS patients - partially because they're so interesting! Dr. Ruscetti is a case in point. Dr. Mikovits asked him if he felt she should take on ME/CFS (long before XMRV showed up). He didn't know anything about the disorder but after several days visiting gave her an emphatic 'Yes!'. In his recent talk, he stopped at one point and stated that "And they can remember the day and the hour in which their life changed", something he clearly thought from a medical perspective was just fascinating... Of course, CFS patients really are fascinating in so many ways; yes , they present problems that the medical profession just doesn't know how to deal with, but that makes them fascinating to the right kind of researcher. They are inherently interesting. Hopefully the exposure that XMRV has brought will bring more researchers, like Dr. Bateman's microbiologist, into the field.
    • The Big Research Players Are Interested - CFS research has often been the realm of researchers who have a personal interest in the field for one reason or another. They are working in small groups or by themselves. They're often not working at the major Academic Centers that are the central drivers of research in the US. XMRV, though, has gotten major academic centers finally involved in studying CFS and she ticked off a list of them.
    • Pharma is Poised to Act - Pharmaceutical companies spend an enormous amount of money on research. If XMRV turns out they are eager to jump in. The huge success of drugs for Fibromyalgia apparently really opened  their eyes and XMRV's potential to leap disease boundaries must have them  salivating. Dr. Bateman noted that the pharmaceutical companies also play key roles as educators.
    • Inspired the Community to Donate - she also felt the discovery had inspired the Community to donate is it never has before, which is critical to efforts such as hers.
    • CFS is in the Media - the media may drive researchers nuts but being in the media gets CFS in the public eye and can play an important role in getting more funding.
    QUESTIONS

    Dr. Bateman got 'muted' and no one could figure out how to unmute her and so Dr. Racaniello got the questions. Contamination? How to tell if it was present? That drew a little laugh - good question, indeed! Dr. Racaniello was clear, however, that he could find no reason to believe that contamination was present. For one thing XMRV in samples does differ slightly - which is not the kind of thing you would see in a contaminant. Is the blood the right place to look for XMRV? Not necessarily, the blood is the most convenient place to look for the virus but it could be present in higher numbers elsewhere. What if XMRV in CFS doesn't pan out? He felt researchers would continue studying XMRV and he felt their interest in CFS has been reinvigorated as well.

    Check out the Webinar here    . It will be up on Youtube next week.

    July 14th

    •  the XMRV Webinar with Dr. Racaniello and Dr. Bateman and Dr. Vernon is tomorrow. It's at an earlier time that usual - 12pm Eastern Time/9 AM Pacific Time. Dr. Racaniello talked about XMRV in a recent interview here.
    • The Grey Lady Stirs - Several weeks after the Alter paper controversy started it finally hit the New York Times. There's not much new here on the controversy itself although, as always, the Times does an informative article. The Times has been good to CFS patients of late, and here they quote Hillary Johnson and Annette Whittemore, among others. Dr. Stephen Monroe of the CDC, who appears to be overseeing the effort on CFS, either was misquoted or displayed a profound ignorance of the subject with the reporter stating he said that the agency believed that infectious agents could be one of many possible triggers for the disease. We do think the CDC understands that the question as to whether infectious agents 'trigger' this disease has been settled many moons ago. (The CDC funded the Dubbo studies which proved it (not that it needed to be proved)). Stating that he was not surprised at the patient uproar over the papers being withdrawn Dr. Monroe said “This is a very well-informed and highly connected patient and advocacy population, and whenever there’s any new information, it’s circulated widely,”
    • XMRV Action Site - to promote news, information and advocacy regarding XMRV is up and is in the process of getting put together. Check it out here.
    • XMRV Hits an AIDS Review Journal - XMRV has shown up in the "Hot News" section of a medical journal called AIDS Review. In this short and very technical article the authors take XMRV very seriously and bring up some interesting points, one of which is, the medical commmunities ability to determine, by using longitudinal samples, if XMRV infection is related to disease onset (does it immediately trigger CFS?), or if the initial infection takes years to progress to CFS (as occurs with HIV and AIDS). This presumably simply involves testing old samples of blood, finding XMRV and then contacting the sample donors to see how they are doing. (It's amazing what the medical community can do if they decide to spend some money on a disorder!). More on this later.
    July 13th

    • VIP Dx Serology Antibody Test - is slated for early August. The test has been pushed back - something that should come as no surprise to anyone who's been keeping an eyes for XMRV for the last 8 months.... Because a good antibody test appears to be the 'antidote' to this talk of contamination, the appearance of a solid antibody test should be a big step forward for the WPI. They, of course, are not the only ones working on an antibody test; Dr. Singh at Utah is, Abbot Labs are, the DHHS Working group is and other groups probably are as well.

      The test will reportedly cost $250 alone and $600 if you want a culture test done with it.
    July 12th

    • A Different Kind of XMRV? Dr. Mikovits and Racaniello Talk! - Check out this new article on XMRV from Phoenix Rising in which Dr. Mikovits provides some startling new information on why researchers may be missing XMRV in their studies. Dr. Racaniell talks about PCR and why he thinks researchers may be missing the bug in their studies.
    • Dr. Deckoff Reports - continued steady progress for both her and her daughter after 4 months on antiretrovirals.
    • National ME/FM Action Network reports that Dr. Jolicoeur, the Canadian retrovirologist who was unable to find XMRV in the first go-around is having another go at it.
    July 10th

    • Alter Paper on its Way to Publication (Unchanged?) - The CFIDS Association reports:  "The [FDA/NIH] researchers have conducted additional experiments as requested by the reviewers, and their paper is expected to be published in the Proceedings of the National Academy of Sciences within weeks."  Sources to CFS Central say that the researchers' conclusions have not changed (!).
    • Don't forget - the XMRV Webinar with Dr. Racaniello and Dr. Bateman and Dr. Vernon happens in the 15th.
    • Coming up soon - an interview with Dr. Mikovits and Dr. Racaniello about XMRV.

     

    July 8th

    • Investigative Reporting Take II - first Hilary Johnson reported on some of the background elements of the DHHS imbroglio involving the Alter paper and the CDC study. Now Mindy Katei at CFS Central has filled in more of the blanks. She reports that the CDC was the driving force behind the yanking of the Alter paper not the DHHS. The DHHS officials were apparently asleep at the switch as the two opposing papers raced ('raced' -right!) towards publication. It was the CDC that played watchdog, and alerted senior public officials at the DHHS about the impending clash of results, and then pushed them to ask the editor of PNAS to request more tests. Mindy reports that the editor-in-chief of the publication (PNAS) said it was highly unusual for a paper be withdrawn after getting to that stage of publication. She also reports being told that the DHHS has complete control over Dr. Alter's work and has no obligation to publish it at any time.

      The Human Touch - The CDC reported that they could find XMRV in a laboratory sample and thus should be able to find it in a human sample as well. Dr. Mikovits take on this couldn't be any clearer. Citing the differences in sensitivity between analytical;ly (lab) derived assays and clinical (human) derived assays Dr. Mikovits stated" “The CDC assays as published in Retrovirology would absolutely not detect XMRV".  

      Another Player in the Mix? - It was reported that another lab - possibly Dr. Singh's  - was able to find the pathogen in those samples. Now Mindy reports that (a) yet another lab was able to find XMRV in those samples and more importantly that (b) the CDC was sent XMRV positive samples from another lab. This, of course, would mean that another lab has found XMRV in the blood of human subjects - something that the WPI it has only, thus far, been able to do. We have reports that Cooperative Diagnostics has provided the CDC with the blood from more severely ill CFS patients and that a paper with the results from that study is in the works but all indications, thus far, were that Cooperative Diagnostics was unable to find XMRV in its samples as well. If Mindy's report turns out to be accurate then either Cooperative Diagnostics found XMRV in it'sif samples or yet another lab has entered the fray.

      For it's part the CDC stated that they used the procedures they did because 'no validated' positive XMRV samples exist, which suggests that they did not consider the samples they were given 'validated' and we don't know if they found XMRV in them or not. Of course, providing validated positive XMRV samples that all researchers can use to determine if their testing protocols are accurate, is a key goal of the big DHHS project, and will provide much-needed clarity in the field. One wonders how much one can trust the results of any study before that occurs.

      There's much more in Mindy's article including a section from Mary Schweitzer looking at the CDC's track record with CFS. Check it out here.
    • The Cohort Question (Again...) - While we're focused on the testing procedures Kim McCleary of the CFIDS Association brought up an interesting fact about the cohorts being studied. I have no idea how she figured this out but some additional research revealed that only two of the subjects studied had acute onset of CFS. We knew the cohort was CFS-lite - but we didn't know it was this lite - at least as regards viral triggers. The cohorts clearly can't explain zero positives given the 4% positives in healthy controls reported in the Science paper but a weak cohort, combined with another problem, say a poor testing protocol, could and would drive the numbers down further. 

      What is really wanted and needed is a study with a strong cohort and good testing procedures. The CFIDS Association study on XMRV should fit that bill as should the Light/Singh/Bateman study, the WPI's UK study and hopefully others. The CAA study only contains people with acute onset because they feel these patients may be more likely to have XMRV; this is the patient group that Dr. Peterson focused on for so many years in Incline Village.
    July 7th

    • AIDS Study Finds No XMRV - another (sigh) negative study. We heard that researchers are taking a look at XMRV in other diseases. Some XMRV was found in immunocompromised transplant patients. Here a large study (almost 1000 people) looking for XMRV in AIDS found zero XMRV using quantitative real-time PCR. (1000 people! That presumably illustrates the amount of money available to AIDS researchers. One wonders after the first 200 negatives why they kept going!? What was the point? The abstract does say the study was from people who were part of a Multi-center study - so may be they were at regional differences). We don't know what sequences they looked for (gag is preferred). My recollection is that nested PCR is better as well.
    July 6th

    • Hilary Johnson Speaks Out- Hilary Johnson has just posted a long blog that provides alot of backup information on the controversies over the last couple of weeks. According to one of her resources the directors of the NIAID and the NIH as well as administrators at the CDC, were all involved in the withdrawal of the Alter paper. She reports that the primary investigator at the FDA was Shyh-Ching Lo and that the paper was near enough to publication for a galley proof to have been sent to the editor's office. She reports that the Alter this paper was not a surprise to the CDC at all, that three months ago they had briefed the CDC extensively about the study and it's outcome. The CDC, on the other hand, kept the outcome of their study close to their vest leaving the Alter researchers greatly surprised when it came out.

      The biggest question right now concerns the results of the testing the CDC did on the XMRV samples from the WPI. Hillary reports that Dr. Switzer proposed a collaboration between Dr. Mikovits, Illa Singh at the University of Utah and the CD and that Dr. Mikovits sent samples to both Dr. Singh and the CDC. Dr. Singh was able to identify XMRV positive samples while the CDC did not. (Whether that, in fact, happened, doesn't appear to be a question any longer; it now seems clear that the CDC was unable to identify XMRV positives in the WPI sample set). If the effort was truly a collaboration that we must assume that both the WPI and Dr. Singh are aware of the CDC's findings.

      Conspiracy? So what is going on? Hillary Johnson casts the events of the past couple of weeks as simply the latest evidence of an ongoing conspiracy to save face by upper-level bureaucrats that is doomed to fail. Dr. Fauci, she believes, lacks the 'ethical compass' to do anything more than to worry about his reputation. If saving his reputation means condemning millions of CFS patients to a disabling infection so be it. She acknowledges that respected researchers like Dr. Alter will not be swayed by internal pressure and that the truth will come eventually out. With the withdrawl of the Alter paper, and the coverup of the CDC's inability to find XMRV samples in the WPI's samples, the CDC and NIH are simply playing a delaying game that they are doomed to lose.

      Or Confusion? - Only time will tell, of course, but the conspiracy theory has some holes, the biggest of which is - why engage in a conspiracy that is doomed to failure? If the truth is going to come out - and with all the researchers working on this pathogen - it does appear that it is going to come out, then why suppress evidence now that will come out later, and in doing so leave you looking a) culpable and b) incompetent? Why not simply jump on the bandwagon and save your own personal reputation and reputation of your institution?

      Another question concerns motive; if you're going to engage in an activity that, if exposed, could damage or ruin your career, you're probably going to have a darn good motive for doing so. It's clear that no one in the federal government has done well by CFS patients...they have ignored this disease, they have not funded it, they have not chased down promising leads....their history is a decidedly ugly one and they have alot to make up for. But covering up a legitimate finding is another story indeed - particularly if it involves more than CFS patients. The 600,000 or so possibly infected CFS patients have never been the main for the feds, the big issue driving the Fed effort on XMRV is the 10 million or more Americans potentially infected with this pathogen and any conspiracy theory must take that into account. Are senior officials at the NIH and CDC willing to cover up evidence of XMRV in the healthy population simply as a means of getting at CFS patients? That seems very unlikely.

      Then there's the face saving question. There is going undoubtedly going to be egg on the faces of many Federal officials, and hopefully they will be held to account when the cause or causes of CFS are validated but. of all the possible factors, XMRV provides a great escape hatch for them, the likes of which they will probably never see again. XMRV was, of course,  only discovered a few years ago; more importantly, it was discovered using a kind of technology that only became available a few years ago. Sure it's possible that if researchers had looked really hard at CFS samples for pathogens they could have found it but XMRV didn't show up even in the one group that did look really hard for pathogens - the WPI. In some ways XMRV presents a great opportifhttp://www.ncbi.nlm.nih.gov/pubmed/20597166unity for the federal research community to squiggle out of the CFS mire, with at least some of its face intact.

      Putting Stakes in the Sand -  Instead of the broad ranging conspiracy theory to keep CFS patients down a more likely explanation for the events that have taken place is that everybody thinks they are correct. In this scenario the CDC tests the WPI samples, is unable to find XMRV in them, believes it knows why and then proceeds to put its stake in the sand by publishing it's paper. (In this scenario the CDC believes it can find XMRV and that XMRV is actually not present in the WPI samples! (How does that happen?))

      This is a tough issue; it lends itself to conspiracy theories...except for the fact that the truth will apparently come out in the end - hence, there's no logical reason to try to cover something up; in this game the goal is not to pretend to be right but to actually be right. Given the situation that appears to me to be the logical conclusion.

      Dr. Alter and Dr. Lo test the WPI samples, do find XMRV in them and proceed to at least try to publish their work. Yes, that work is withheld due to political pressures but no one doubts that, pending the results of more testing, it will not come out and we will know what they found. Dr. Singh finds XMRV in her set of samples and begins her own study, the results of which we don't know yet.

      That paper will come out as well as will the work of the DHHS study overseen by Dr. Mikovits, the WPI's UK study, the Montoya-Columbia study, the Swedish study, the just funded Hanson-Bell study... and work by Abbot Labs and Glaxo-Smith Kline and other labs who have a big financial stake in proving that XMRV exists....At the end we will know who was right and who was wrong and we should know why. (My guess is that the answer will be such a surprising one that no one will be overly embarrassed.)

      This isn't 1993; this is not a youngish researcher vs the CDC - there are real heavy-weights involved on both sides.  This is Dr. Ruscetti at the NCI, Dr. Silverman at the Cleveland Clinic and Dr. Alter at the NIH vs the CDC. There are simply too many good researchers involved in studying XMRV for the truth not to come out. The CDC has drawn it's line in the sand - it believes it has the goods on XMRV; the WPI and the other researchers have drawn theirs - they believe they have the goods on the virus; we will see in the end who prevails.
    July 5thh

    • XMRV SampleGate at the CDC? - More reports have emerged suggesting that the tests the CDC used in their study were unable to find XMRV in the blood samples given to them by the WPI. The Patient Advocate reported that for

      "The CDC got zero positives with their test, zero for twenty. Another independent lab, using the exact same samples (split) got either 9 of 10 or 10 of 10 positives. At this point the CDC did not question their methods and plunged ahead, blindfolded, over the cliff. Someday, and let us hope it is soon, this is going to make an unbelievable and incomprehensible story. In this instance real life trumps imagination. No one could think up such an absurd situation."

      If this turned out to be true, and we still don't know what these reports are based on, this would be an astonishing situation. It's hard to imagine any lab making such a gross error. The CDC did show they could find XMRV in low amounts - why, if this is so, they would be unable to recover XMRV from the WPI's samples is unclear. John Leslie on the Phoenix Rising forums several days ago stated he had an e-mail indicating the CDC was unable to find XMRV and repeated that assertion today. The only report from the CDC on this subject was Dr. Monroe's dodge of Mindy Katei's question specifically asking him to give the results of those tests (see below). Is this rumor or fact? Hopefully we'll have some more solid information this week.
    July 4th

    • Mindy Katei Interviews CDC Personnel on XMRV/CDC WPI Blood Sample Flap Emerging? - Check out Mindy's interesting email interview with Dr. Stephen Monroe. Dr. Switzer stated that the blood collection tubes used did not interfer with pathogen preservation. When asked if the CDC were able to detect XMRV in the samples provided them by the WPI, however, - instead of providing a seemingly easy answer - yes, he dodged the question....so now that question looms larger. We know the WPI provided the CDC with 20 XMRV positive blood samples.  If the CDC was able to find XMRV in them fine and good....but if they weren't that brings into question their ability to find XMRV in the blood. We know the CDC was able to find XMRV in plasmids from Dr. Silverman in a 'background 'of whole blood  or PBMC's but that is not quite the same as finding it in the blood. Might this new virus have some tricks up its sleeve? The question remains - was the CDC able to find XMRV in the WPI's samples?
    • Patent for XMRV Antibody Test Filed - Dr. Mikovits and the Dr's Ruscetti have filed for a patent for an antibody test for XMRV. They describe the test as a means for diagnosing XMRV-related diseases which they believe could include everything from XMRV-related lymphoma (Mantle Cell Lymphoma (MCL), Chronic Lymphocytic Leukemia lymphoma (CLL)) to chronic fatigue syndrome (CFS), Niemann-Pick Type C Disease, fibromyalgia, Multiple Sclerosis (MS), Parkinson's Disease, A bi-polar disorder, Amyotrophic Lateral Sclerosis (ALS) or autism. The application, of course, suggests the group feels it has a finished product. This appears to be the first diagnostic XMRV patent applied for. We know that several other groups, including large pharmaceutical labs, are working on their antibody tests.  Antibody tests are monetarily a prize because that is how pathogens are usually diagnosed in the doctor's office. 
    • Having it Both Ways:  the CDC on XMRV - the CDC made a strong case in their Retrovirology paper that the search for XMRV in CFS was essentially over when they said that 'minor differences' in the assays used in the studies thus far could not account for the inability to find the virus. Besides regional differneces in XMRV prevalence (it's not in the southern US but is in the Western, Northern and Eastern US????) they could provide no good reason for the differing results - leaving, by default, operator error by the WPI's/NCI's and Cleveland Clinic as the sole remaining one.

      Would the Real CDC Please Stand Up? - On the website they tell a remarkably different story - stating that technical differences in the assays used, selection criteria for inclusion of CFS patients, clinical complexities of CFS, and possible variations in XMRV infection rates among populations in different regions - could all help explain the differing results. In fact, the authors of the paper raised these issues - only to discount them one by one. (They did note that additional studies of different cohorts is needed)

      The website, on the other hand, emphasized how much there is yet to learn about this newly discovered virus stating "One important consideration is that XMRV is a newly identified virus, first reported in 2006, and much remains to be learned about this and related viruses. As additional research is done on XMRV and similar viruses, it is possible that new findings might emerge that differ from those reported in the Retrovirology and Science papers" and that "Additional studies are needed to further evaluate if XMRV is associated with adverse health outcomes, including CFS".

      The authors of the paper and of the website appear to have come to different conclusions regarding XMRV - something we're starting to get used to in the federal arena. In any case, the conclusions in the paper are likely to have far more impact than those on the website.
    • WPI Samples Not Used? - The WPI has seemingly been providing positive samples to everyone and they provided them to the CDC team but you never would have known it from the paper. In fact it appears that the CDC was  careful not to use any materials from the WPI. They did, however, get a good deal of material from authors of the Science paper and other XMRV researchers: they used XMRV anti-serum from Illa Singh, anti - SFFV antibody from Sandra Ruscetti and an XMRV plasmid from Dr. Silverman.

     

    July 3rd

    • Another Study Wraps Up p - Rrrr on the Phoenix Rising forums has been keeping us up-to-date on the Dr. Felsenstein XMRV study at Massachusetts Gen. She reports that the study is complete and written and is being shopped around for publication in a journal. No word, of course, on the results.
    • We are still waiting on publication of the Huber and Joliceur studies.  You can find a list of ongoing studies here. About 24 studies are listed; six have not found XMRV, Dr. Alter did find XMRV but the study has not been published. Hemispherx found XMRV using WPI labs. Several Canadian studies not on the list may be underway as well.
    July 2nd

    • How Not to Find XMRV? - with conspiracy theories dancing in their heads, as the patient community reeled at the publication of the negative study and the withdrawal from publication of the positive study, Dr. Vernon, Research Director of the CFIDS Association, (and former CDC employee), unleashed a lacerating attack on the CDC paper in an article called 'Blood From a Stone". Pointing out that the types of tubes used to collect the blood weren't suited for pathogen collection she said the study was 'designed not to detect XMRV'. Tiring of studies that that do not attempt to replicate the WPI's 'exacting' techniques, she said problematic studies like the CDC study Studies such as this one from Switzer, et al., "continue to absorb time, divert precious resources and fuel controversy instead of consensus." Check out an analysis of the situation here.
    • Today the WPI released a short statement noting, once again, that no research groups have yet attempted to replicate the original study. After stating that the WPI had shared detailed knowledge of its techniques and positive samples (which were not used in the final study), they noted the WPI is validating more sensitive assays for the virus which they will share with other researchers.
    • How Not to Find XMRV? The CDC XMRV Study-For a more in-depth look at the paper and the controversy swirling about it check out How Not to Find XMRV? The CDC XMRV Study I wrote.
    • NatureNews Investigates 'Unnatural' Doings Behind the Alter Paper - NatureNews provided more background information on why the Alter paper was yanked. The Journals investigation confirmed the belief that DHHS officials were behind it. Additional studies are reportedly underway to confirm/deny the original reports findings.

      "Monroe (Stephen Monroe, director of the CDC's Division of High-Consequence Pathogens and Pathology) called the delay a "strategic pause", initiated after CDC officials learned of a contradictory study by the NIH and FDA team, reported at a meeting by NIH researcher Harvey Alter. Although a PNAS spokeswoman reportedly told The Wall Street Journal that the study had been accepted for publication, press officers at PNAS refused to comment on the matter today. One scientist familiar with the issue said that the journal's editor-in-chief, cell biologist Randy Schekman of the University of California, Berkeley, sent the paper out for further review after government agencies requested the publication delay. That review came back with requests for additional studies, the scientist says."
    • XMRV on the Clock! - If you'll look to the left you'll see a clock counting the days from the publication of the original XMRV paper. As of today it's been 252 days since the paper was published...and still no replication study.........
    • Check out a nice overview of the situation here from the CFIDS Association
     July 1st

    • Outcry over Blocked Papers - Dr. Racaniello called the decision by the DHHS to withhold two papers accepted for publication 'senseless' and charged that "they have compromised the entire peer reviewer process". He noted that the decision would raise suspicions in the CFS community about their motives (which it certainly has)
    • CDC Paper Released/Alter Paper Yanked- Not long after that the CDC paper was released. The DHHS is going with the CDC results and put under question the Alter results by allowing the publication of the CDC paper to go through while continuing to hold up the Alter report. The CFIDS Association published Dr. Alter's statement that his paper has not (?) been accepted for publication and that his group is conducting further experiments. "Our paper has not yet been accepted for publication. My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete. Our goal is not speed, but scientific accuracy". That statement came a day after PNAS reported this "The paper was accepted for publication in the journal Proceedings of the National Academy of Sciences of the United States of America but is on hold, according to Ashley Truxon, media coordinator for the journal."

      DHHS clearly believes there are holes in the study - which was not what we expected given the difficulty researchers have had, and are continuing to have, simply simply finding the virus.

      The CDC paper found no evidence of XMRV in CFS patients or healthy controls. You can get a free copy of the paper here.
    June 29th

    • "Altered Reality": Two Papers Disappear (or How to Conduct Science in the Dark - Amy Dockser Marcus at the Wall Street Journal has become the go-to journalist for news on XMRV and CFS in the national media. Now she's broken the news that the Alter study, soon to be published in the presitigous journal "The Proceedings of the National Academy of Sciences of the United States of America", has now been withheld from publication. This followed reports that a negative study by the CDC was yanked at the last minute from publication in another reputable journal 'Retrovirology". The papers were reportedly put on hold because because 'senior public health officials' wanted to see either 'consensus' or simply a clear reason why the papers disagreed. Marcus called the move 'rare' and stated it was causing 'a stir in the field'. IACFS/ME President Fred Friedberg called for the immediate publication of both papers.

      The path to publication is tricky. There's the need to get money, usually lots of it, to start a  study. If a researcher works in an institutional setting the resulting paper may have to pass review at that level. Then they have to meet the criteria for publication. Once that occurs a sigh of relief is undoubtedly given because now the paper is  now on its own. The scientific community will poke and prode and shine a bright light on it and it  may fail but at least it's out there...months or even years of research have a tangible result.

      Except in this case. Dockser reported her science contacts stated it" is unusual for a paper to be held after it has already gone through the formal peer-review process and been accepted for publication".  The situation was unusual enough that neither the CDC, Dr. Alter or FDA apparently even thought to check with public health officials prior to submitting their papers for publication. Fearing an embarrassing rift between two key agencies on an important health issue, public health officials, however, stepped in at the last minute to ensure that neither paper saw the light of day until they could judge which one was correct - leaving researchers in the dark and patients just plain aggravated.

      Who wins/loses? The DHHS spares itself the fate of having two departments posting diametrically opposed results. Who loses? The DHHS by playing the role of the heavy and by getting egg on its face by letting things get to this state. (If they were this concerned why was no one monitoring both efforts?) The Research community loses, by not, at least at this point, having all the facts at their disposal - facts that could inform ongoing and future research efforts. The CDC loses by giving an already untrusting CFS Community on an opportunity on a gold platter not to trust them.

      At the end it's astonishing - at least to this layman - how little resolution there is to the XMRV question 8 months after the publication of the initial paper. The problem was reportedly not simply that the papers disagreed; it was that they disagreed in a manner which didn't lend any clarity to the XMRV question; ie even after looking at them it is impossible to tell who was right and why....

      Too many stones unturned? - One wonders if the CDC is giving full attention to the XMRV question. The agency pulled back on the DeFreitas virus in the 1990's when top officials determined that they had better places to spend their money. If the CDC is getting bushwhacked by outside findings on XMRV one has to wonder if a similar cost benefit analysis has caused the agency to leave some stones unturned in the race to understand XMRV. Discuss it here.
    June 28th

    • The Dog Days of Summer - it was the calm after the little storm as the news on the startling Alter report died down... Or did it? The lack of hard news breeds time for speculation so here's some nice ripe speculation. The leaked Alter lecture followed hard on the disappearing act by the CDC - and that was no accident....except that we got the events backwards.

      The rumors about a negative CDC paper had  been buzzing around for a couple of weeks plus there was the CDC's Press Conference/Press Release - whatever it was - that at least several sources said was on for that Monday. That study was clearly on its way to publication but then suddenly the whole disappeared in smoke.  What happened? One guess is that the CDC, hearing about the FDA/NIH findings, pulled the paper at the last minute

      Is this Really Rocket Science? Is this a plausible scenario? In some ways it doesn't seem to be. It's hard to imagine how any laboratory with significant resources, could, at this point in the game make such a major mistake. Let's put it this way; if the initial reports were correct then the CDC's been all over this bug for almost eight months now; more than enough time to try every plausible method of finding XMRV. One would think that THIS lab given the public interest in THIS pathogen would have crossed all their i's and dotted their t's by now. This has nothing to do with chronic fatigue syndrome; it has everything to do with a major lab being embarrassed by a major failure. Given that it seems incredible that after 8 months of work they wouldn't know everything there is to know about how to find or not to find XMRV. (Is this ROCKET Science?) One guess, if this scenario with the CDC turns out to accurate.... is  that the answer to finding XMRV is not going to be whether or not the virus is cultured or not - that's too obvious; it's going to be a niggly little detail that no one at the time thought mattered.

      Slowing Things Down - Not Speeding Them Up - It's been suggested to me that the Alter release could have the result of many pulling back and rechecking their findings..which could mean less negative papers in the short run and more positive papers in the long run. If Alter is right it's possible that we many never, in fact, see another negative study again.....
    • Moving at Lightning Speed NIH Funds XMRV Grant!  - Never count the NIH out with CFS. In one fell stroke the NIH doubled the number of grants its funded on XMRV this year with a grant to Rebecca Hanson at Cornell University in Ithaca, New York. That's right, halfway through this year the NIH has managed to match its total of last year (2), before all the ruckus broke out.

      The Bell Grant? - This is a good grant, though, that could have special implications for CFS. Dr. Hanson will be looking for XMRV in a cohort of individuals from rural New York who became ill in 1985 - it's hard to imagine that this is not Dr. Bell's pediatric cohort. It's a very nice study that will look at a number of hot topics; they'll do repeat exercise testing and look for changes in XMRV expression and protein production, pathogens, cytokines, nitric oxide, a growth factor and red blood cell changes. They'll also be looking for variants of the virus. As the author puts it: "We will investigate whether this retrovirus is both necessary and sufficient for the development of the illness, or whether additional pathogens are involved. We will determine whether the level of health and exercise intolerance in chronic fatigue syndrome is related to particular virus variants, expression of viral proteins, and/or dysfunction of the immune system." An important study, indeed!

      CFS SEP sponsored - this study made it through the special panel for CFS (SEP) (a rarity) and was actually funded by the National Institute of Allergy and Infectious Diseases (NIAID) - one of the big missing players in XMRV thus far. Its not a big grant as grants go - $270,000 - but it's quite an extensive project.  It'wills due to end May, 2012.

      The WPI has yet to get a grant funded. As more grants work their way through the system we should see many more grants on XMRV and CFS from the NIAID.
    • Fund XMRV Research Poster - Check out this  nice poster with its collage of central figures in XMRV asking for more funding.
    June 24th

    • The Mystery Study? - Dr. Alter confirmed that a paper from the FDA and CDC is in the works but the big question now is which study is it? Is this part of the big DHHS study the Health and Human Services Working Group is overseeing? Or is this another study? At first blush it fits in well with the HHSWG study which contains NIH, CDC and FDA groups yet Dr. Mikovits, who is part of the group overseeing the HHSWG effort, said it was not, to her knowledge, part of that effort. Meanwhile, the link to the Dutch Press Release has now been removed from the WPI website.
    • Famous AIDS Doctor Consulting on XMRV - Dr. Marcus Conant, a central figure in the AIDS epidemic in San Francisco is closing up shop in San Fran and moving to New York where, he will, among other things, be "working as a consultant for researchers looking into a virus that may be related to chronic fatigue syndrome and autism" according to San Francisco Gate.
    June 23rd

    • National Media Begins Picking Up Alter XMRV Story - the story is finally filtering down to the national media. On the Wall St Journal's Health Blog Amy Dockser Marcus quoted Annette Whittemore saying that "It's what we've been waiting for" although she cautioned that she wanted to see it 'in print". Importantly an NIH spokesman confirmed the accuracy of the Atler presentation slide while refusing to say more.
    • WPI Posts Press Release on Website - The WPI's Facebook Page yanked the Dutch Press yesterday. Today the WPI website posted a link to the press release. We should make clear that the two 'outlets' do not necessarily mirror each other or agree with each other. The WPI website reflects the professional opinions of the Whittemore Peterson Institute. The Facebook site is mostly run, to my understanding, by Andrea and Annette Whittemore and the two sites may differ at times.  In the future I will make clear from which part of the WPI, website or Facebook, the information is coming from.
    • Meanwhile Dr Deckoff-Jones Reports Progress - rather serendipitously Dr. Deckoff-Jones reported that progress slowly continues on her and her daughters now 15 week antiviral treatment trial.  The cumulative progress for her daughter appears to be pretty strong with her having enough energy to go out socially and enjoy herself for four of the past five days - a major achievement for many people with CFS. Dr. Deckoff-Jones also reports she is not self-prescribing; that both she and her daughter are under the care of another physician.
    • Dutch XMRV Leak Reverberates - Patients leapt for joy at the news suggesting that the WPI's findings have been validated by two major institutions in the US but not everybody was happy that the information had been released in a way it was. The Whittemore Peterson Institute's Facebook page posted a link to Dr. Raccienllo's blog but refused to discuss the press release otherwise, citing the need for a prepublication embargo of scientific findings. The CFID's Association didn't post a link anywhere as they cited the same need. Both organizations either fund or produce research and need to maintain strict standards regarding scientific mores.

      ESME - an Alliance of European professional researchers, felt no such compunctions, immediately sending a link out to all their subscribers and posting the press release on their website. Neither the ME Association nor MERUK nor Invest in ME, however, have reported on it nor does it appear that other news services have. It's hard to imagine that the 'scoop' could imperil publication of an important paper but the episode does underscore the antagonistic relationship between a press that wants to expose everything and a research community for whom prepublication exposure can have dire consequences. Did the Dutch Journalists do us a favor with their scoop?

    • Red Cross Report At the Zagreb Conference - Roger Dodd, an official at the American Red Cross also gave a lecture on XMRV in the Zagreb conference in late May. Some of his outline could presage a shift that could occur in how CFS is viewed in the future. For instance, after noting that CFS patients often have an acute infectious onset his outline states that outbreaks in the disease do occur -  a well accepted findings amongst patients but something that's quite controversial in the traditional research circles.

      He also provided a list of infections that are putatively associated with CFS. What was impressive about Dr. Dodd’s list was it’s size; it contained enteroviruses, Epstein-Barr virus, cytomegalovirus, HHV-6 and 7, B-19 parvovirus, hepatitis C virus, HTLV (DeFrietas), spumavirus, Chlamydia pneumoniae, Coxiella Burnetti, Brucella and Toxoplasma.

      He also several times noted the involvement of CFS support groups and the effects of patient advocacy going so far as to highlight a plea from what appears to be a person with CFS that people with CFS be banned from giving blood in the US.

      Dr. Dodd's assessment of the different possible outcomes for XMRV ranged from it being irrelevant (due to it being a contaminant) to a ‘Doomsday’scenario, at least from the aspect of the Red Cross.  In the Doomsday scenario, researchers find that the virus

      ·      does indeed cause dread diseases such as CFS and cancer

      ·      that it has an extended incubation period;  - this presumably refers to its ability,  like HIV, to apparently be present for a long period of time before its effects are seen, making it difficult to easily spot an infected person and stop the transmission

      ·      that it spreads rapidly

      ·      that it’s, in fact, already present in much of the population

      In the Doomsday scenario the cat is either already out of the bag or very difficult to keep in the bag because the virus spreads so easily and usually undetectably. From an official standpoint this would make the virus difficult to control..

      He then noted that the Red Cross still needs much information; in particular, a Gold Standard test that can reliably detect XMRV and information on rates of prevalence in its donor population and determining what its risk factors are (ie is it just found in CFS patients or people with other diseases,  healthy controls?).

      The Blood Study : Then Dr. Dodd provides some information on the National Heart Lung And Blood Institute (NHLBI) XMRV study . The study is using whole blood and plasma to look for XMRV in 400 samples from Reno (BSRI?) and 25 positive samples from the WPI and 25 controls. They are validating their PCR results using antibody tests

      Was the Past Prologue?- If this report proves true one can look back in hindsight and see evidence that it was on its way given a uptick of positive reports over the last month. Several weeks ago Dr. Klimas reported a positive paper was on the way; a finding a Phoenix Rising Forum member reported was originally from Dr. Suzanne Vernon. Today, Hillary Johnson reported in a blog that two researchers have contacted her in the last few weeks stating that a major research paper confirming the Science paper will be published shortly and that it could push positivity rates in ME/CFS even higher.

      It’s possible that the recent AABB announcement recommending that blood collection groups aggressively discourage blood donation by CFS patients, was prompted by these findings as well. Before the Fat Lady sings, however, about the association between XMRV and CFS, we need to see that research in print.

    June 22nd

    • Dutch Journalists Report XMRV both NIH and FDA Confirm Science Study Findings (!) - In a startling announcement two Dutch journalists from the Health Professionals Journal Ortho report that they were able to obtain a lecture from NIH official Dr. Harvey Alter at the Blood Transfusion workshop May 26/27th in Zagreb, stating that both the FDA and NIH had confirmed the WPI's original findings. Dr. Dr. Harvey Alter is  the Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. The Dutch Journalists report that Alter's lecture stated "The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy". The lecture also purportedly stated The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings."

      The Dutch report does not include rate of XMRV prevalence found in CFS but does report that the 'association with CFS is 'very strong' which can only mean that it was found in a much higher percentage of CFS patients and healthy controls. Indeed, given the fact that the FDA and NIH findings in healthy controls are similar to those found by the WPI (4-7%) it's possible that prevalence rates in CFS were found to be similar the original findings (67%).

      Dr. Alter is a well known researcher (he has a bio in Wikipedia) whose work lead to the discovery of the hepatitis C virus. The chief of the infectious disease section and the associate director for research of the Department of Transfusion Medicine at the Warren Grant Magnuson Clinical Center in the National Institutes of Health (NIH), he received the distinguished Albert Lasker award in 2000. He has 300 citations to his name in PubMed. Dr. Alter would if not confirm or deny the report but did say a paper would be out soon.

      It's hard to imagine that such a report coming from such reputable scientists working in such renowned institutions, would not quickly legitimize the original Science findings. Researchers around the world (and governments and physicians and, of course, patients) have been waiting for a definitive word on XMRV. If this report is from the FDA and the NIH (somewhere in the NIH?) then this may be the report that everyone's been waiting for. Because it's harder to find XMRV than not find it any report that shows how to actually find it has the potential of negating all the negative studies before it.

      We have to be careful, though. Until these findings are in printed in black in white in a medical journal they mean nothing to the research research. If the WPI's findings are confirmed an association with CFS will be established. Then comes the work of finding if a virus is associated with any other diseases and what role it plays in CFS. It could be a passenger virus or it could a major factor in CFS (ie the Puppet Master?). In any case the confirmation of the WPI's original findings would, in itself, unleash alot of money and activity towards XMRV and CFS.

    June 18th

    • AABB Takes Steps to Discourage CFS Patients From Giving Blood in the US - the AABB (American Association of Blood Banks) recommended today that CFS patients be discouraged from giving blood. This was expected given that a few days ago, Dr. Katz an executive vice president of the group, personally recommended that CFS patients not give blood.  The AABB did not state that CFS patients not be allowed to give blood; that is apparently in the hands of the FDA, but they recommended that blood collecting organizations provide a poster and a handout that aggressively discourages people with CFS from giving blood. (The AABB is not a small group; their membership includes 2,000 organizations spread across 80 countries. Creating and distributing the materials to all the blood collection centers will obviously cost a nice chunk of money)

      The Whittemore Peterson Institute, the CFSAC and the CFIDS Association of America all recommended recommended that CFS patients be not allowed to give blood. (Both Dr. Klimas and the CAA had noted that CFS patients with their low blood volumes shouldn't give blood anyway :)). A survey by the CFIDS Association indicating that at least 6% of people with CFS had donated since they became ill, undoubtedly helped AABB recognize  the Blood Banks had a real problem. This move by the AABB brings the US a least partly into sync with other moves by Australia, New Zealand and Canada to eliminate the risk of cotaminating the blood supply with XMRV until more is definitively known about its incidence in CFS.

      The CFIDS Association Reviews the blood situation here.  / AABB XMRV Fact Sheet
    • Anti-Retroviral Blogs - Its been slow days for XMRV lately. Two blogs purportedly by a doctor and by a research grad student that are decidedly against the idea of trying antiretroviral drugs have appeared recently. The doctor presumably represent view similar to the 65% of health professionals in the Medscape poll that would not use antiretrovirals at this point.

      The Dr. - someone in the UK who says he sees a lot of CFS patients -  believes that only a minority of people with CFS have chronic viral infections that are causing their disease. He noted that if XMRV is present then antiretrovirals are indeed the suitable choice for treatment but only if the virus is actively replicating and can be shown to cause the disorder. Right now all we can say about XMRV replication is that, at least in the cells that have been tested thus far, it appears to be very low. It's certainly possible that XMRV Is actively replicating in some other cells someplace else in the body. Primate studies have shown that upon infection XMRV moves through the body very quickly infecting many different parts of the body. The WPI was able to find very low amounts of XMRV In white blood cells and show that it was present in the blood but no one, as yet, has even looked for it elsewhere. The WPI is reportedly doing that right now. He's definitely right that taking antiretrovirals is something of a crapshoot right now. What he  mostly misses in the rest of his blog is  why people are taking that kind of a crapshoot right now.

      The doctor seems to get it about how desperate some people with CFS are at some points in the article but then doesn't elsewhere. One point he states "What has been interesting to me is the way in which patient groups have responded to the available research and information about XMRV. Most appear to remain firmly wedded to the idea that it is the real deal, and many ME/CFS forums are discussing research and treatment in great detail. Perhaps not mindful of previous false hopes in this area of medicine, some are obtaining, at great expense, complex experimental drug treatments via the Internet or from compliant doctors."

      One wonders how else he would expect any patient group of a chronic and often disabling disorder with few good treatment options to react? Repeatedly citing the evidence of long-term damaging side effects he strongly disapproves of Dr. Deckoffs treatment yet also states that short-term use of these drugs is generally well tolerated. Yet he also ignores Dr. Deckoff's statements that she is engaged in short-term trials of these drugs.

      The Doctor also takes alarm at discussions on the Phoenix Rising Forums about how to take these drugs yet discussions such as these are at the heart of any public Forum; it's hard to see how they could not occur. After referring, really rather snottily to 'all this foolishness' he does note that it does bring 'home one fact very clearly, namely that CFS/ME patients are despairing for answers and solutions to their plight, and will try almost anything.". It would be great if that was the take home message people got from this blog.

      If the doctor portrayed some of the snootiness one sometimes associates with the British upper classes, at least he's polite. Polite is not something anyone would ever accuse ERV of being. With a personality like a pit bull on steroids (she has a picture of a pit bull on her blog) Erv could very well make Ty Cobb look like a sweetheart. That doesn't mean she doesn't have her points at times, however. In between her digs and put downs she, too, brings up the question of viral load - noting interestingly that we have no idea what it is - we simply know it hasn't been easy to find the virus. Viral load is one of the important questions about XMRV and the use of antiretrovirals and our inability at this point to quantify that is probably a real sticking point for those 65% of  health professionals on the Medscape poll. who are against trying anti-retrovirals.

      She also believes that, if you can't ojbectively measure success there's no point in trying - an argument that resonates in some parts of the research world but hardly would in patients.  HIV patients did have those diminished T helper cell levels to watch. CFS patients have NK cell problems (which, for some reason are laughable to her) but their immune abnormalities do not appear, at least at this point, to be associated with XMRV. Erv believes if you don't have a lab test to measure then you shouldn't be trying a drug - as if the primary purpose of the drug was to improve lab test results.

      So how to measure antiretroviral efficacy in the absence of a lab test? How about functionality? How about pain assessments? How about putting an activity meter on each patient? How about those crazy RNase L readings? These things can be done. Science can move forward without figuring out all the answers first. In Erv's world researchers tie things up with a pretty bow first; they take several years to quantify viral load and match XMRV to an abnormal lab test and then they deign to try a couple of small treatment trials. But given that some patients have been waiting for decades; it's no surprise that some will gravitate towards  antiretrovirals like a moth to a light.
    • If there is

    June 16th

    • Blood Official Suggests CFS Patients Not Give Blood - Dr. Katz, a member of the AABB task Force became the first prominent blood official in the US suggests that people diagnosed with chronic fatigue syndrome not give blood. In last Friday's teleconference Dr. Katz noted that he was speaking for himself. Another AABB spokesman, Jennifer Garfinkel, stated that the organization, which includes the facilities that collect blood in the US,would start building awareness among donorsto ask that CFS patients not give blood.
    June 15th

    • Win Money for Pandora by voting on Facebook - this is so easy it's ridiculous.

      1)Log-on to your facebook account
      2)Search for Chase giving application
      3)Click on the 'Like' button (only the first time)
      4)Go to [URL="http://chasegiving.tk"]chasegiving.tk[/URL] (you can bookmarks this page)
      5)Click on the direct links that will guide you to the WPI and P.A.N.D.O.R.A. voting page
      6)Click vote
      7)You can vote every day up to the 13th of July

      Check out a video on how to do this here. We'll keep you updated on how these groups are doing. Thanks to Frank for producing the video. (WPI is no longer in the running for this)
    • Medscape Poll on Using Anti-Retrovirals in CFS - what an interesting poll this is; first it's kind of amazing that it exists at all - the medical community is pondering whether its appropriate to try anti-retrovirals before a) the XMRV finding has been validated by another laboratory and b) before it's been definitively proven to play a major factor in CFS.

      Even more surprising are the results; I would have have thought the overwhelming response from this conservative community would have been that, under no circumstances, its it acceptable to use these drugs at this point. Its true that 68% of the respondents voted that way but 32% of the respondents did not; they felt it was either appropriate to do that or they weren't sure. I think this poll indirectly highlights the fact that a nice chunck of physicians do have a sense of how serious a disorder CFS is, and they are open to options that they wouldn't have been open to earlier.


    June 13th

    • Tribune Author Live Blogs - Trine Tsouderos, the author of "Hope Outrunning Science" Live Blogged about CFS and XMRV. (Click on the big box)
    • Another Phoenix Rising Forum Member on Antiretrovirals  - Daffodil began reporting on her anti-retroviral therapy May 29th. Like another patient on the Forums she tested negative for XMRV by PCR and culture, but so was ill she felt she had to do something. By the 29th she been on AZT and Raltegavir for almost 2 months. She seemed to improve a bit at first but her symptoms (malaise, swelling, feverish feelings, brain fog, etc.) all came back. She also experienced tachycardia. After her dose was upped she felt better.  By June 11th she feels she sees improvement but thinks it's going to be a very long road. Check it out here.
    June 12th


    June 10th

    • XMRV Update Webinar in July - Sign up Now! - The CFIDS Association's XMRV update webinar will feature Dr. Racaniello, a well known commentator and blogger on viral issues, Dr. Bateman, who is right in the thick of it with her XMRV study with Dr. Singh and  Dr. Light in Utah and the Association's Research Director, Dr. Suzanne Vernon, who is on the DHHS XMRV task force. It looks to be a quite illuminating talk. Warning - participation is limited to 1,000 people so if you want to hear it live sign up now.  Its on July 15th from 12-1:30 pm EDT.
    • Dr. Enlander Proposes Large Multi-Lab study - We've all heard about the need to for different labs to look at the same samples. Now Dr. Enlander is proposing a large double blinded multi-lab study that he believes will tell us whether the problem is in the different methodologies or the different patients. There is no breakthru in laboratory procedures here; this is simply a chance for a number of CFS labs  to test exactly the same patients and see where they disagree or agree. Dr. Enlander would be coordinating the study. It would take about $10,000 on his side to bring it off.

      Proposal to test the presence or absence of XMRV virus in the CFS in a double-blind trial using replicant patient specimens in five different labs.

      Preamble The presence of XMRV virus in that CFS patients was reported in the Science in October 2009. This caused great excitement in the scientific world, as an infective organism was suggested as the etiology of CFS. The excitement abated as other labs attempted to replicate the result. Papers were soon published denying the presence of the XMRV virus in the CFS patients. Discussion then opened with various researchers debating the possibility of poor storage of specimens, poor selection of CFS patients without proper criteria, different methodology in the determining the presence of the virus, and other aspects in the research methods. Patients and physicians were then left in a quandary whether the original research gave us insight into a viral etiology. Indeed the picture became more blurred.

      We will attempt to determine whether testing methods or patient selection were different or faulty. We propose to replicate a study in the five labs that were prominent in the disputed discussion, by replicating patient and control specimens in divided aliquots in a double-blind trial.

      Method       100 patients , who have been diagnosed by the Fukuda and Canadian criteria for CFS, and 100 matched controls will have 15 ML blood drawn (two vials) . The 15 ML blood specimens will be combined into a single tube and will be centrifuged . The supernatants will be refrigerated. Each patient or control specimen will be numbered randomly and blindly 1 to 200, each specimen will then be divided into five aliquots and labeled A,B,C,D and E . We will thus have 1000 test aliquots to be divided between five viral test labs.

      We will send 200 aliquots in frozen containers to five virus testing laboratories; A) Whitmore Peterson Institute in Reno Nevada, B) Jonathan Kerr in London, C) Simon Wessley group in London, D) Gow in Glasgow, and E) de MeirLeir in Brussels The selection of these labs does not mean that we recommend their methods. These labs have not replicated the original thesis. Perhaps, the comparison of duplicate specimens in a double blind trial can be revealing.

      Results       The test results will be sent to Dr. Enlander in New York, where the blind will be opened and the results tabulated. As each lab has received the same patient and control aliquots, we can attempt to correlate differences in testing method without the problem of bias in patient selection.

    June 10th

    • Dr. Komaroff on XMRV - Dr. Komaroff was one the first researchers to recognize chronic fatigue syndrome as a legitimate disorder in the early 1980's. A Harvard professor, he's been invaluable spokesman for us for many years. While his peers, at least at first, must of thought of him as a wild-eyed radical for his support of CFS, within the CFS field itself Dr. Komaroff is thought of as a careful, moderate analyst.  A very respected figure he traditionally winds up the International Conferences with his take on where the field is now. So what does this longterm CFS spokesman think of XMRV?if

      During his hour-long talk at the Massachusetts CFIDS Association (available on video) in late April Dr. Komaroff spent a good deal of time working his way through the many other exciting aspects of CFS research before he got to XMRV. When he finally did so he noted how prestigious the Science journal is and the overlapping layers of evidence they demanded the WPI present before they would publish the paper. (Seeing the signicance values - which are statistical approximations of the likelihood that the results were due to chance - was eye-opening; statistically these were very strong findings.) After noting that he himself had never written a 'perfect' paper, Dr. ifKomaroff noted that the sample sizes for three of the backup tests were fairly small. Regarding the negative studies he would have nothing to do with the idea that the researchers were incompetent - calling them very skilled researchers - but he did note that there was one problem in all of the studies that could have caused them to miss XMRV altogether. Whether he was referring to a different problem in each study or to  each study's decision not to culture the virus was unclear. It was clear that he felt none of the studies had closed the door on XMRV.

      Dr. Komaroff's most interesting comment from me regarded his 'need' for XMRV to turn out. He noted that as a longtime advocate for CFS patients and as a physician, there is a part of him that's always yearned for a simple answer to the disorder but he's never believed that CFS is going to be that simple. He believes ME/CFS is a multi-systemic disorder in which pathogens play a major role but that he would be surprised if one pathogen was the 'puppet master' so to speak. He sees XMRV's role as a co-facter - perhaps a pathogen that works in concert with other pathogens to cause the symptoms of the disorder.

      It was intriguing and uplifting to see how optimistic he was irregardless of how XMRV turns out. He noted how much has changed since he was one of the lone figures fighting for CFS patients, and what a different attitude his peers have towards CFS now; in particular, he remarked on how few of them think of it as a psychological disorder - and he believes more change is in store. In fact, he believes that the next two years will bring another sea change in how the medical community relates to ME/CFS and that we're in store for quite a bit of progress.
    June 9thhhhh 9th

    • Dr. Deckoff Responds - the Chicago Tribune article yesterday came down strongly against the idea of CFS patients trying strong antiretrovirals before XMRV has been proven to cause ME/CFS. Dr. Decker, of course, has been very public about her belief that it's appropriate and mostly safe for very ill patients to try these drugs. She quickly responded to the article in her blog.

      She stated that there is little risk from short-term use of these drugs, that common lab tests are sufficient to monitor patients and that patients today typically take far lower doses then in the early days of AIDS when many of the horrendous side effects were noted.

      Dr. Deckoff questioned how much different the 'horrible death' AIDS patients would experience without these drugs is from the 'horrible life' some CFS patients experience. She referred to the large body of knowledge that's been built up around AZT and other retrovirals if and the fact that her daughter has has experienced no ill effects after 3 months on the drugs. She also noted the many CFS patients commonly experience deleterious side effects from psychotropic and other drugs that have little chance of significantly helping them. In short, she felt the risks are acceptable given the short term nature of the typical patients regime and their ability to remove themselves from it at any time. She also talked about the autism/XMRV connection. There's much more in her blog - check it out here.
    June 8th

    • Dr. Deckoff Reports - Dr. Deckoff continues to report on her and her daughters anti-retroviral treatment trial. Since starting treatment 3 months ago her  she reports that her daughter is more stable. Adding Tenofovir lead to a noticeable improvement. At some point she stopped long-term antibiotics and she started Actos shortly before the anti-retrovirals, so she's had alot of treatment changes over the past couple of months.

      Dr. Deckoff started Tenofovir at a low dose two weeks ago and is up to full strength with it now. She reports much improved cardiac and GI symptoms. She does note that she had been improving since she discontinued Lyme treatment 10 months ago. (Check out her very interesting blog on what she believes are the dangers of some Lyme protocols). Neither of them perfect test cases because of the other strong therapies they were either on or had recently stopped but as the trial proceeds we'll know more and more about the specific effects of the retroviral drugs. For now both report improvement and both still have a long way to go.
    • Harsh Chicago Tribune Article - An article on the front page of the Chicago Tribune called "Hope Outrunning Science" paints Dr. Mikovits in a rather negative light.
    • Another XMRV Study - XMRV studies appear to be popping up everywhere. This is one we missed. George on the Forums found a call for Ph.d students to participate in a study on the role amyloids play in XMRV transmission in the semen. Amyloids are interesting because some preliminary evidence suggests that amyloids in the brain may be a factor in CFS. The semen is a long way from the brain and there isn't much evidence of sexual transmission in CFS so its not clear how it could be a factor.  In any case, the study does indicate the wide-ranging level of interest in this pathogen.
    • XMRV Confidence Poll - where are the Phoenix Rising forum members on XMRV's chances right now? Probably not as confident as six months ago but still very hopeful. Of 104 votes about 22% are sure that XMRV is a major cause of CFS, 55% believe there's a good chance that that's true but need more evidence, 9% believe it's possible but are skeptical at this point, 14% believe XMRV is probably a co-factor and only 1% don't believe it plays any role at all.


    June 5th

    • The New Ad (look up :)) If you buy supplements and want to support Phoenix Rising's work check out Prohealth. Prohealth was started by a CFS patient and its standards are second to none. If you click on that ad and buy a portion of the sales will go to PR. Thanks!
    • Dr. Vernon Talks - Dr. Vernon of the CFIDS Association made XMRV a central feature in her monthly article for the CFIDS Association. First she noted the many viruses that have been implicated in chronic fatigue syndrome, and after making a call for more research in those areas, paused....and said now we have XMRV - a very different situation, indeed. Emphasizing that the XMRV finding has to be validated first she pointed to brighter days ahead for ME/CFS if that occurs stating that its validation would make CFS a source of 'intense' funding" - something hard to conceive of a year ago. The potential power of the XMRV finding  is enormous; it has the potential to re-orient the research communities approach to an entire disease and make it, for the first time in 30 years, an 'intense' area of funding.

      She also explored the possibility that XMRV could be part of our 'metagenome'; ie. one of the thousands of living organisms that we generally, but not always, co-exist with just fine. This idea came from the findings that XMRV is present in some healthy controls and at least one other disease state. This suggests that XMRV could be present but generally bottled up in most healthy people, but like other viruses we know about, has somehow escaped its bounds in CFS and is wreaking havoc. She noted that precise process happens in autoimmune disorders, cancer, chronic inflammation and could very well may be happening in CFS as well.
    • CFS Patients Knock Out Two Study Coordinators in One Week! - not long after the details of two studies; one in California and one in Canada were published here and on the Forums we were met with calls to please turn off the spigot and  remove the posts (which we did) because the study coordinators were being deluged! Such is the interest in XMRV....
    • Dr. Silverman Publishes - Dr. Silverman of the Cleveland Clinic was one of the co-authors of the Science paper in Oct. He's a very well respected researcher and he's just published a review of what we know about XMRV in CFS and prostate cancer. Unfortunately all we don't have the full paper but we do the abstract and Dr. Raccinello's take on it.

      Dr. Silverman posits four reasons why the four studies since the Oct paper have failed to find the bug. We've heard them all before. Contamination from mouse droppings - which he discounts because separate labs using different techniques have found XMRV. Different genetic sequences in different countries make it hard to find XMRV. (This doesn't seem likely; the WPI reported that 2/7 samples from the Kuppeveld were positive for XMRV; ie they can find it in Holland). Differences in the geographic spread of the virus - ie, its not in Europe (or Canada or parts of the US?). (This doesn't seem likely either - given the WPI's ability to find XMRV in the Kuppeveld samples and Dr. Huber's and Dr. Joliceuru's inability to find XMRV in US ot Canadian samples). Only the last reason - that the research community is really not sure how to look for XMRV really holds allure ( "here are no standardized, sensitive methods of detection, and no widely available positive control samples."if) . (Note that he doesn't seem to be worrying about cohorts - presumably too many patients have been tested for that to be a real concern any more.) if

      But why no widely available positive samples for XMRV to test against? The WPI furnished positive samples to the Kuppeveld and Huber teams (reportedly 19 of them to Huber). They have stated they're willing to provide them; why other teams don't have those samples is unclear.
    • XMRV and CFS Teleconference in one week - Dr. Louis Katz, an infectious disease specialist and National Blood Bank expert will be speaking on XMRV and CFS and Blood on June 11th in a teleconference. Among other things he'll be evaluating 'current research initiatives'. Cost is $154.



    June 3rd

    • The New Ad (look up :)) If you buy supplements and want to support Phoenix Rising's work check out Prohealth. Prohealth was started by a CFS patient and its standards are second to none. If you click on that ad and buy a portion of the sales will go to PR. Thanks!
    • Big (BIG) Stanford Study Starting Up - Now THIS is a study. No, it's not all on XMRV  - just a portion of it is - what's exciting is everything else they're looking at.  This study by Dr. Montoya looks like 'Pathogen Central' - it looks like they're testing for just about every bug even remotely associated with ME/CFS. Once the 'approved version' is ready it'll be posted here
    • Canadian XMRV Study Closes Its Doors -My apologies to the poor Canadian XMRV study organizer who got deluged with emails about a study that we later found out was restricted to people living in Edmonton. (ouch!)
    • Could XMRV Cause the "Arousal' in CFS? - Many ME/CFS patients feel a kind of 'nervous tension' is present. Gerwyn on the Phoenix Rising Forums posted a discussion suggesting XMRV could play a role in the 'wired and tired' feeling endemic in CFS.



    June 2nd

    • Much Ado Over Nothing - CDC Press Release  Proves to be a Mirage - The news that the CDC was going to release a major paper and have a press conference at the same time came from several sources but has not proven to be true. Rrr, a Phoenix Rising Forum member took it upon himself to actually ask the CDC if they were going to have a press conference and the answer was:

      There are no plans for a news release from the CDC or a CDC sponsored press conference on the subject of XMRV. There is a paper authored by an official from the CDC under consideration for external publication but the details of such publication would be released/announced by that publication and not the CDC. Hope this helps, but that is all there is at this time. Regards..
    • Dear Michele - Michele Obama got a letter on ME/CFS courtesy of Annette Whittemore when she spoke to her at the Nevada Women's Summit in Reno, Nv.  Regarding her letter Andrea explained

      I wrote it last night thinking in case I wasn't well enough to attend . I just was very very short in stating 17,000,000 suffer from ME/CFS from around the world . Then I stated we only get 3,000,000 dollars to reasearch this disease from our government. This must change I also asked her to please look into XMRV and find out the implications involved. I thanked her for coming and hoped Reno would be the host I know she can be :)

      Expect the Obama's to be coming to Nevada frequently as they support Sen. Harry Reid (and CFS advocate) in his tough fight for reelection.
    • The Canadian XMRV studies - Meanwhile Canada is definitely doing its part to figure out what XMRV  is doing in ME/CFS. Dr. Joliceur, a well respected researcher jumped in very early; his study is complete and it did not turn up any XMRV. Unfortunately we don't know anything about the methods used.

      Dr. Lorne Tyrrell, a well known backer of CFS patients in Canada, and the leader of the La Ka Shing Institute of Virology in Edmonton, is starting what looks like a quite comprehensive study. In consultation with the WPI, CDC and NIH Dr. Tyrell is examing cytokines, RNase L and XMRV. (This study suggests that despite the string of negative studies, XMRV is far from being a dead topic at the CDC or NIH.) The study will start this summer. Check out the study details here. (thanks to Linda MacDonald for providing this)

      Dr. Tyrrell: DaisyMae on the Forums provided this information on Dr. Tyrrell: He is the Chair, Institute of Health Economics and Professor and CIHR/ GSK Chair in Virology, University of Alberta Dr. Lorne Tyrrell is the Chair of the Board, Institute of Health Economics. He is the CIHR/GlaxoSmithKline Chair in Virology at the University of Alberta and the CEO of ViRexx, a biotechnology company in Edmonton. Dr. Tyrrell is also the Chair of the Board of the Alberta Health Quality Council and a member of the Medical Advisory Committee of the Gairdner Foundation and of the Research Council of the Canadian Institute of Academic Research. In 2004, Dr. Tyrrell completed 10 years as the Dean of the Faculty of Medicine and Dentistry at the University of Alberta.

      A medical specialist in internal medicine and infectious diseases, Dr. Tyrrell began working with Dr. Morris Robins in 1986 on a system to identify potent antivirals against hepatitis B virus (HBV) which infects about 400 million people worldwide. Through their work they discovered several potent antivirals against HBV and this resulted in a major collaboration with Glaxo Canada (now GlaxoSmithKline).

      The collaboration led to the discovery that lamivudine had potent antiviral activity for HBV and today lamivudine is licensed worldwide as the first oral antiviral for the treatment of HBV infections. Lamivudine has been shown to decrease the development of cirrhosis or liver cancer in chronic HBV carriers. This work also reopened the option for resuming liver transplantation in patients with end-stage liver disease from HBV. More recently Dr. Tyrrell collaborated with Drs. D. Mercer and N. Kneteman to develop the first small animal model to support HCV replication.

      Dr. Tyrrell has won numerous awards at the University of Alberta (Rutherford Undergraduate Teaching Award, J. Gordin Kaplan Research Awards, and the University Cup). He won the ASTech Award for Research in 1993 and the Gold Medal of the Canadian Liver Foundation in 2000.

      Dr. Tyrrell was appointed to the Alberta Order of Excellence in 2000, an Officer of the Order of Canada in 2002, and a Fellow of the Royal Society of Canada in 2004. He was recently awarded the F.N.G. Starr Award from the Canadian Medical Association in 2004, and the Principal Award of the Manning Foundation in 2005 for his work on the development of oral antivirals for the treatment of HBV.

      Dr. Eleanor Stein, a ME/CFS physician (who actually has ME/CFS) is reportedly engaged in another study. Dr. Stein has provided patients for past Canadian ME/CFS research efforts.

    June 1st

    • CDC Skunks Out? We have it from a good source that the CDC was, indeed, going to make a 'major announcement' on XMRV today but that it has been postponed. They're starting to look like the gang that couldn't shoot straight.
    • VIP Dx Announcement - Meanwhile, VIP Dx went ahead and did make their major announcement. The long-awaited antibody test will be available within 30 days. The director of Marketing And Client Relations for VIP Dx stated that “This serological test will allow our lab to quickly and accurately determine which individuals are positive for XMRV. Discovering who is positive is an important first step in helping to determine how XMRV is impacting human health”.

      That is certainly true; antibody tests are the cheapest and most common way of detecting pathogens. Since they are detecting immune agents produced in response to an infection (the antibodies produced by B-cells) they can't be  picking up byproducts of contamination - as a PCR test could. The only question marks about antibody tests, so far as I can tell, are a) their ability sometimes to pick up the presence other pathogens and b) their lack of accuracy in patients whose immune systems have been so depleted that they're not producing antibodies.

      The WPI has been working on this antibody test for some time now and presumably would not release a test that was not specific for XMRV only. With regards the second question, it's not clear how many CFS patients are that immune depleted. In any case, the new antibody test should result in quicker, cheaper and more accurate testing for the vast majority of patients and help considerably on the research end.

      Several other antibody tests are being developed. Dr. Singh at ARUP at the University of Utah, John Hackett at Abbott Labs, John Petros at Emory University and Dr. Ruscetti at the National Cancer Institute are all reportedly treating antibody tests as well.

      VIP Dx Becomes Unevex - VIP Dx has now been acquired by the WPI and the WPI Center opens at the University of Nevada VIP Dx (now Unevx) will be housed within it and become, with WPI, a part of the University of Nevada system. In effect it will be a speciality University Lab for the WPI. This is a major step; it means a CFS lab will be on the premises offering, presumably, as low cost tests as possible. With Unevx on board the WPI can develop tests, study them in a research environment and quickly make them available. The lab will play an important role in the 'translational medicine' ie; quickly turning research advances into treatments the WPI facility espouses to. One has to assume this move was in the works but its a relief that it happened. It certainly points to the strong support the University of Nevada has for its Whittemore Peterson Institute.

      A Clarification on Ownership - I have been informed that the Whittemore's never owned VIP Dx as was reported; instead prior to the sale the lab was owned by its shareholders and Annette Whittemore's small number of shares were held in trust for the benefit of the WPI. My understanding is that the Whittemore's provided substantial financial assistance to the lab years ago because it was the sole source of RNase L and other speciality tests in the United States.  In any case with the opening of the WPI facility in August, the Unevx Labs will be firmly ensconced within the University system.

      A European Lab...Finally - RED Labs in Belgium will begin offering XMRV tests - finally providing European CFS patients with a testing option. VIP Dx's website is still bouncing on and off the internet. To check out the announcement and discussion click here.

    May 31st

    • Has It Begun? - the VIPDx website is partially up: the crazy ads are gone, the normal website front is up but most of the tabs are gone - it appears they're in the process of doing some heavy web reconstruction. The big news, though, is that the website now states "VIP Dx will make a major announcement on Tuesday, June 1st". One has the feeling it's not going to be on the next test for HHV6....Will this news coincide with the publication of the CDC press release and study? Has the 'Big News' begun? Something major has happened at VIP Dx . We'll know what tomorrow!
    • XMRV Confidence Poll: You've heard of the consumer confidence poll that tracks consumer confidence in the economy. Now, as we start off on what could be a big week for XMRV, take the XMRV Confidence Poll; this poll asks what role do you guess XMRV plays in ME/CFS? Check it out here
    • XMRV Prevalence and Definition Poll - How much of a factor do you think definition will play a role in who tests positive for XMRV? Will XMRV show up in spades in the Canadian definition and bomb in the Oxford? Let us know in the XMRV Prevalence and Definition Poll.


    May 30th

    • The Struggles of VIPDx - VIPDx is the only lab licensed by the WPI to do the XMRV tests. The VIP Dx website was down for almost a month earlier in the year and, if I understood correctly, has been down for some time now. Actually down would be an improvement as the website currently shows the VIP Dx logo but is simply filled with Google Ads. Retooling a website to accomodate new testing is one thing - allowing your web presence to be overtaken by Google Ads is quite another. A message on the site states that the domain is not attached to an active website. Maintaining a presence on the web is obviously critical for a business and it's not a difficult thing to do and it's hard not to conclude that something has gone quite wrong at VIP Dx labs.
    • Anti-retroviral Treatment Trials on Phoenix Rising - Several more Forum participants are reporting on their anti-retroviral treatment trials.

      CFS Since 1993 has been on them for two months now. He reports he felt a little better at first but is back to where he was.

      JimBob just started Raltegavir three days ago - and he will keep us up to date.

      LadyBugMundy started antiretrovirals a couple of months ago and has stopped reporting on her experiences with them.
    • Hemispherx, the maker of Ampligen, reported on XMRV results presumably from VIP Dx from patients taking Ampligen. You can access the webcast for another couple of weeks here. He reported

      "We've looked so far at several hundred specimens using a prespecified research plan. We can say based on the interim report, (we're still looking to do several hundred more samples) that the initial results indicate two things;

      1) about two thirds of people with chronic fatige syndrome do have a very serious retrovirus, which is infectious, and which can only be found in a small percentage of normal people, but can be seen in people with hereditary prostatic cancer.

      2)But the second and really exciting function here is that the patients who recieved ampligen and also had the novel retrovirus had a very dramatic benefit greater than that of patients who received ampligen and did not have this virus.

      It's a tentative finding and as I said the study is ongoing, but as I said it does involve hundreds of subjects studied on a blinded basis in a predetermined research plan. We believe that we've tentatively identified a subset of patients who are obviously in harms way. We know this because the incidence of suicide, cancer and sudden catastrophic cardiovascular events is very high in this population generally. Some of these events may be due to this virus, and those patients have a disproportional therapeutic response to ampligen versus patients on ampligen without the virus and versus placebo patients. So we hope within the next several months to finish up on this analysis and to meet with the FDA to lay out a clinical plan for confirmatory study."

      It's a very interesting finding. Hemispherx is hardly trusted by many but they do report they are looking at hundreds of patients, and that the 'study' is 'blinded in a predetermined research plan" (?). VIP Dx is reporting XMRV is present in 2/3rds of this presumably quite sick population and that people who were XMRV positive and were taking Ampligen were doing much better than people who were XMRV negative. Ampligen is an immunomodulator - not a anti-retroviral - and Hemispherx has been accused of promising too much for this drug in the past but it's clearly very effective in some patients. Why it would do better in XMRV positive patients is a puzzler, for sure.

      Dr. Carter's statement that we've 'tentatively identified a subset of patients who are obviously in harms way is intriguing since it suggests that they're looking at a potential biomarker for illness severity. He also suggested that severely ill XMRV positive patients do disproportionately better on Ampligen than anyone else- which would be a blessing since this is the hardest group to help. However we don't have any numbers - we don't know how much better they are doing (are they 1/2 way to well? 2/3rds? 1/5th?)  He said it would take several months of analysis to get the numbers out. This was Dr. Carter speaking to investors not the scientific community.
    • Wiping XMRV Out! (of the Blood Supply) - WPI and Cerus confirmed that the Cerus pathogen inactivation system called Intercept does inactivate XMRV in blood - thus potentially providing a way to remove it from the blood supply. The Intercept system uses ultraviolet light and chemicals. While it is not approved in the US it is approved in some countries in Europe, the Mideast and in Russia. There are concerns about the chemicals used in the US. A 2003 trial resulted in the Intercept system being rejected because of slight respiratory problems- a problem Cerus says has not shown up elsewhere. It does not appear that Cerus is close to making it to market in the US at this point.




    May 28th 

    • Dr. Mikovits is continuing to rack up her frequent flyer miles. She'll be at the AutismOne conference on Sat talking on XMRV from 3-4 pm CST. They are streaming live some talks (its a huge conference) but it doesn't appear, at this point, that hers will be one of them.


    May 27th

    • Dr. Huber / Dr. Mikovits Clash - Chris came down hard on Dr. Huber in his blog but there are different viewpoints out there. Several people have pointed out to me that some of Dr. Mikovits comments about the negative studies  questioning the ability or even desire of other retrovirologists to find the virus have created considerable frustration amongst  some researchers and he wondered if that played a part in their little 'clash'. We saw this in Dr. Racciniello's talk with Dr. Goff when felt that some of Dr. Mikovits comments suggested that she thought that the rest of the research community 'doesn't know how to do PCR'. 

      Another person who met with Dr. Huber found her to be a bright, friendly woman who had initially been very excited to find a link between XMRV and the endogenous retroviruses she's been studying. Another person noted that this is the second group to be able to find XMRV in samples sent to them from the WPI but not in their own samples. There are a number of possible explanations for that, one of which is XMRV is somehow getting into the WPI samples but is not present in CFS patients at large.  It's also possible that there was some problem on the researchers end.

      Given the problems with the PCR studies the ability to find antibodies to XMRV - which we know that Dr. Singh and others are looking for - will be key factor.  We do believe that some of the more comprehensive studies will be coming out soon. That CDC paper has not come out this week as expected - now we hear that a Press Release is being written and it will come out next week.

     


    May 26th

    • The Patient Advocate on the XMRV News from the Invest in ME Conference - Chris, the Patient Advocate, reported on the Invest in ME Conference, as he does for many. The conference was a good one but Chris felt Dr. Huber went too far when she decided, apparently at the last minute, to report the negative results of her XMRV study. Here's Chris's take on what occurred:

      "Towards the end of the day, things heated up a bit. Brigitte Huber gave a talk on her HERV-K18 research and then added a coda on XMRV. She did an unexpected and gratuitous job of sandbagging Judy Mikovits, who was the next speaker. Huber methodically went through her recent XMRV “study”, explaining in her officious voice that her PCR test was the “assay of choice” and “very sensitive”. She tested 228 samples, 112 from Susan Levine, 105 from Taylor in Chicago, and 11 from the HHV6 foundation. Then she put up a slide with red letters that said, “All samples were negative for XMRV integrase”.

      Huber said, “We cannot see in our patients XMRV like in the Science article”. In a further confounding maneuver she hinted or charged that the WPI study was “contaminated”. This charge needs to be challenged, as it is a lie. As she was leaving the lectern Huber said in a wonderfully disingenuous voice (to no one special, but I suppose it was directed towards Judy Mikovits), “Sorry”. It was a revealing and weasily moment.

      To me it is becoming obvious that certain people, especially doctors who have been treating patients unsuccessfully for years with half-baked treatments, or researchers who are connected to the academic research money tit, are trying to sink Mikovits and the WPI. This is not science; this is venality. This negative reaction has little to do with whether XMRV has any validity or not. That is a separate issue and there are two sides to the argument; and it needs to be fought out according to established scientific methods. I think that certain critics sense, perhaps correctly, that soon they might be out of a job.

      The day before the conference, there was a brain storming session with the various participants at this conference – Cheney, Chia, Huber, Jason, Whittemore, Chapman. It is a great idea and discussion/disagreement (sometimes fierce) is often a necessary and useful result of such exchanges. In this afternoon session, Huber launched an attack on Mikovits.Mikovits did her usual job of defending herself. Huber left the group early (maybe to go shopping?). As she left Huber promised that she would not create a controversy by revealing her study results the next day.

      Overnight Huber changed her mind, honest soul that she is, and made her awkward revelation. It was all quite unseemly, and did not fit the tone and tenor of this conference – which is heavily ladened with sick patients, hanging on by a thread. They make a great sacrifice to get to this conference, but not to hear this kind of shit. After all this is really not a scientific conference, and this nice bit of spite was entirely out of place.

      When was the last time that Huber gave one iota of thought about CFS patients? I can tell you exactly – it was… Never!

      I watched this with fascination, realizing that Huber in her righteousness had put her head on a block and asked to have her face kicked in. It was a great setup, a “once in a lifetime situation”, and Mikovits came through big-time, doing what she needed to do. She remained calm (inside she must have been boiling) and delivered a splendid lecture (the best that I have seen her do) and demolishing Huber. The effect was that Huber shrank down to the size of a pea. I had talked to Mikovits the day before about Huber and advised her in general to disregard her critics and just roll over this woman (not that Mikovits spends one moment listening to me). Some critics need to be rolled and this was just what happened. At the end of her lecture, Mikovits got a loud and sustained applause showing deeply felt appreciation."


      Chris also reported that the WPI was moving forward on all cylinders

      "I observed several individuals from the WPI doing their presentations and establishing connections. I can assure you that the announcement of the demise of the WPI is premature. They are moving faster than ever. The WPI is on a trajectory that will leave its critics in the dust. While others quibble over this and that, and lay traps to distract them, the WPI are putting all that aside and focusing on the task at hand. More specific and accurate testing is close at hand, as is means to track improvement in patient’s immune status, as well as clinical trials using various existing anti-retroviral drugs. Peptide T is still in the picture. (Another non-WPI source indicates that GCMAF might be a player.) (Time will tell in all this and the nay-sayers have put great effort into trying to cut off the funding and grants for the WPI. In this they have been somewhat successful, leaving it to the rest of us to do what we can to increase funding for this important scientific research.)

      The WPI is in the process of projecting and clarifying their mission and of making collaborative connections with the international community in a manner that has never been seen before in this disease."

      Check out his full report here.

    • Dr. Peterson in Madrid - Dr. Peterson was reportedly at the Invest in ME conference but didn't speak but did hold a question and answer session in a conference in Madrid (These jetsetting researchers :)) Thanks to the wonders of technology a video is already available and more are to come apparently.  A person stated that he knew of some HIV patients with XM RV who were not improving on antiretrovirals (?) which made him think that XM RV was a passenger virus. Apparently Dr. Peterson has HIV patients with XM RV as well and he asked him about them. Dr. Peterson acknowledged that XM RV could, of course, be a passenger virus - he said that's an area they need to do more work on - but also that that scenario simply could imply that the patient is not getting the right anti-XMRV drugs.

      On a question regarding the negative Huber study Dr. Peterson noted that Dr. Huber used a probe for an enzyme XMRV produces called XMRV integrase and failed to find it.  Dr. Peterson said the question was how accurate was the probe (key question) and what kinds of patients she tested (not a key question). Dr. Huber measured somewhere around 200 patients from Dr. Levine - a well known CFS physician in New York and - and Dr. Taylor, who is studying adolescent ME/CFS patients plus some samples from the HVV6 Fdtn. If this is a cohort problem then it's hard to see how XMRV's going to make a big difference in the ME/CFS Community; these are pretty solid ME/CFS patients. It seems much more likely given the WPI's continuing findings of high rates of XMRV prevalence that the differences lie in the methodology.  He brought up the very interesting point, though, that Dr. Huber was able to find XMRV in a sample they provided her but not in any of her patients. That could suggest a she had a different set of patients - but if XMRV is only found in WPI samples then one can see why she would begin to speculate about contamination - as she did at the Conference.  

    May 24th

    • Heating Up in London - Things apparently got hot in London at the Invest in ME Conference and it wasn't the volcano that was smoking. The Conference was packed with important speakers from Jonathan Kerr to Paul Cheney to Judy Mikovits. Two presentations by Dr. Chapman and Dr. Chai were on one of those 'other' viruses (enteroviruses).

      Huber XMRV Study is Negative - Things apparently got a little hot when Dr. Huber presented negative findings from her XMRV study. It was a pretty large one - 228 patients from Dr. Levine and Dr. Taylor in the US and a few from the HHV-6 foundation. She believes apparently believes that she's found a source of contamination in a reagent; that would be tough news for the WPI since it would be an unsuspected source; ie it's not an area they apparently would have thought to search.

      Dr. Mikovits has always said,on the other hand, and Dr. Coffin has backed her up, that contamination in a slide cannot produce an antibody response in the body. Antibodies are created in the body in response to viruses. If you contaminate a sample it's hard to see how that's going to produce antibodies. That has been the crux of the argument for the WPI.

      Dr. Mikovits reportedly got a standing ovation. Dr. Peterson was there but didn't speak; he'll apparently be speaking in Oslo on XMRV in the next couple of weeks.

      We heard there was going to be a negative study coming out soon; apparently the Huber study was it. We also heard there was going to be a positive study coming out soon as well - could that be the CDC study? That would be a shocker given their history but who knows. For more of the discussion
    • Dr. Klimas Talks on XMRV - ME/CFS Knowledge Center has a great talk by Nancy Klimas on ME/CFS research. Dr. Klimas was one of the most excited researchers when XMRV came out; she's an immunologist - she sees all these signs of immune activation and XMRV fit really well into what she's seen in ME/CFS. Now seven months later, with 3 negative papers behind her what did she say?

      First off she said both a negative and a confirmatory study are coming out. She's not discouraged about the negative papers or even particularly surprised; until the validated methods for finding XMRV have been ascertained she appeared to feel that they're kind of a logical outcome of the process. Meanwhile she is engaged in a four-site study using her samples and the results were almost amusing to hear. She sent out samples to four different labs - all of which said they could find XMRV - and they all gave her different results! (Mein Gott!) Clearly we can know nothing until we have a test that everybody agrees is correct.

      In her studies she's looking for the virus in every way possible; PCR, antibody, culture and ...one last way that escapes me. She didn't necessarily pooh-pooh the early studies but she did note that they are only looking for the virus in one way; the WPI looked for it four ways - and that's what she's trying to do'

      She did note that the pharmaceutical companies have been digging into this virus and they basically know what compounds might work against it - they're just waiting for confirmation that it is there and the trials will start (!). That's great news if and when the WPI's findings are confirmed.

      A Rising Tide - A rising tide floats all boats and the XMRV finding appears to be sparking more interest in CFS across-the-board. Dr. Klimas noted that the NIH review committee she sits on had double the number of CFS applications that it usually does in January and considerably more in June; that's great news for CFS no matter how XMRV turns out; increasing researcher interest has been absolutely one of our key needs and it appears to be happening. Check out the video here.


    May 22nd


    • Granting XMRV - We've been focused on studies but there's the issue of grants as well. We've heard that most researchers are using their own set aside funds to tackle XMRV. This makes sense; it can take quite a while to develop the granting and get it funded. It has been almost 7 months since the big Science paper came out. Have any XMRV grants been funded? (We do know of several grants that have not been funded; Dr. Mikovits has said several grant requests have not gone through). The ProjectRePorter site has replaced CRISP as the main information source for federal grants. I ran XMRV through that and came up with three grants.

      The first awarded to Michael Dean ($701,000)was hard to interpret but Michael Dean is interesting because he is interested in ABC transporters which may be implicated in RNase L. dysfunction. If I remember correctly these transporters maintain the ion gradients between the cell and its environment. I can't figure out what the XMRV connection is but he is involved in an interesting aspect of CFS research that hasn't gotten much play.

      The second, which was awarded to Christine Kozak for $668,000 from the NIAID in 2009, is focusing on factors that block gammaretrovirus entry into the cell first in wild mice and then in primates and humans.This could prove helpful in stopping the virus from further infection in the body.

      The last was awarded in 2010 to 'our own' Dr. Ilya Singh of the University of Utah. This $312,000 study is directed mostly at prostate cancer but will be taking a close look at how XMRV replicates in culture and she'll be looking for XMRV in other parts of the body as well in the general population. It'll be very interesting to see where else XMRV shows up in the body.

      In conclusion, XMRV proposals for CFS or other aspects of the virus have either not made it through the grant cycle or have not been successful.  I expect that will change soon and we'll start seeing many more successful grants making it into the system.
    • Dr. Bell's XMRV Tour continues - Dr. Bell has talked in New York, California and Canada on XMRV and thanks to the European ME Alliance his XMRV tour will continue on 'the continent' this autumn potentially hitting Ireland, Sweden, the UK, Norway, Belgium and Spain. Find out more about it here.
    • Dr. Deckoff's XMRV Trial - Dr. Deckoff just reported on her and her daughters continuing experience with anti-retrovirals. You may remember that she experienced a significant burst of energy and a large symptom reduction about six weeks into her AZT/Raltegavir trial.  Then she plateaued - which is apparently what one expects with AZT; the drug kicks out the active infection in the periphery of the body first - bringing relief and then digs deeper for the virus in the rest of the body. She tried and then tanked on Tenofovir after that.

      Her daughter experienced an increase in energy about six weeks in but then she had an upsurge in inflammatory symptoms and after that returned to baseline. After both went off Raltegavir both worsened and both went back on it and both felt better. After that her daughter went on Tenofovir without experiencing any side effects (in contrast to her mother). My impression was that both had improved but substantial symptoms continue to dog them and the treatments are having very individual effects. Dr. Dekker provides some interesting technical insights into the antivirals later on in the blog.


    May 21st

    • The XMRV Plus Survey Is Here - Kim, Advocate, Julius and others on the Phoenix Rising forums began working on a comprehensive survey to characterize people who tested positive to XMRV in January. It was alot of work and it resulted in a very professional survey. They've also enrolled  statisticians who will mine it for information. If you've tested positive for the virus please take it and add to the knowledge. You can find the survey on a nice-looking website here and a discussion about it here.
    • Dr. Klimas hints about a positive  CFS study - In her latest video overview of research findings in CFS Dr. Klimas hinted (basically said) there's a positive XMRV study in the mix coming up. Could it have been the German study? It seems unlikely because (a) it was a German study and Germany is a long way away and (b) the German study was not on CFS. This suggests that a study in the near future will indeed find XMRV in CFS patients :). She also said there's a negative study coming out. Lets hope the positive one is more comprehensive and the negative one is another 'thin' study. For a discussion check here.


    May 20th

    • WPI on TV - Annette Whittemore and Dr. Donnica Moore talked about CFS and XMRV on Nevada Newsmakers. (The WPI is now a sponsor of Nevada Newsmakers - how interesting to see a CFS organization pop up on the TV; that's a change of pace). Dr. Donnica related about her triathlete husband coming down with CFS and then years later a flu sweeping the family leaving her very athletic son with ME/CFS while she and her daughter recovered. (In that family the guys got it - a real twist). Its easy listening to this to see how Dr. Donnica became a media figure - she's got a clear strong voice, she's very organized - she's made for this stuff.

      This is a pretty substantial talk lasting about 20 minutes (with commercials). Annette noted that there have been 23 new papers on XMRV since the October Science paper -truly an amazing jump in interest in the virus. She noted that since the Science paper came out the WPI has detected XMRV in about 5-600 ME/CFS patients.

      Sam Shad, the host of the program, came up with one of the strangest questions I've heard yet - the cost to society of possibly finding the cause for CFS. He noted that countries like Great Britain that have a national healthcare system are worried about the cost associated with finding a virus like XMRV that causes CFS. Its hard to get over how bizarre that question is but that point has apparently been raised in the UK. One might ask what about the costs of not finding the cause of ME/CFS? What about the human costs? The high economic costs associated with the disease? Dr. Donnica noted that if a country is going to support disabled people then it should support all disabled people. (You could say the same regarding CFS research in this country; if a country is going to support medical research into diseases it should support medical research into all diseases.) She noted that a recent study found that the quality of life for children with ME/CFS is worse than that for children with type I diabetes or asthma. "What people need to understand" she said is that this disease causes significant disability and significant reductions in quality of life"

      We then learned that Annette Whittemore has had communications with Dr. Francis Collins of the NIH and. of course, with Senator Reid. She noted that Senator Reid (please let him be reelected :)) has been a strong advocate for CFS for years and years. Dr. Collins communicated that the NIH is in a 'wait and see' mode regarding XMRV but that they are sponsoring the International Conference on XMRV that's coming up which she was encouraged by. Check out the last segment where Dr. Donnica takes Sam Shad to task for using the term chronic fatigue rather than chronic fatigue syndrome while ignoring his attempts to tell her time is up :).


    May 18th

    • XMRV is...is.....is....There! - Yes, someone actually found XMRV.  (Gasp). They weren't looking for it in the blood or in prostate tissue or in CFS patients and no, it wasn't a US Lab that found it, it was a German lab remarkably enough but after months of no positive results it was remarkable finding...XMRV ppears to be alive and well in Europe, and, of course, if it's there it's probably everywhere.

      This German team lead by Dr. Fisher looked for XMRV in respiratory secretions - a highly targeted bodily fluid by researchers, no doubt, because of worries about XMRV’s infectious nature. Since many viruses are spread by coughing, kissing (we know all about that one) or sneezing one of the first things (after the blood) researchers will want to know is if it's alive and well in the respiratory system.

      These researchers used PCR to search for XMRV (and other viruses) in respiratory samples from about 260 people with respiratory infections who were healthy, had chronic obstructive pulmonary disorder or who were immunocompromised because they had undergone an organ transplant.

      They found XMRV in about 3.2% of the healthy controls (very similar to the WPI’s 4% report of XMRV infection in the blood of healthy controls) and COPD patients and about 10% in the immunocompromised patients.  The increased prevalence in the immunocompromised patients, of course, suggested that the immune system plays an important role in keeping this virus under check, and if the immune system is compromised then the virus can either be reactivated or perhaps gain entry for the first time into the body.

      ME/CFS? - What does this say about CFS? It’s hard to tell. We’ve always known that XMRV could be an ‘opportunistic virus’; one that does not cause ME/CFS but exploits the damage that has already occurred - which appears to be what happened in these immunocompromised patients. Indeed, if you were going to find an infectious retrovirus anywhere you'd probably find it in these transplant patients because the drugs they take turn down the immune response causing them sometimes to collect pathogens.

      Some would say the same type  of process occurs in ME/CFS but not everybody thinks the amount of immune dysfunction found in CFS is particularly significant. Some researchers certainly do but others characterize it as ‘mild immune dysfunction’. It would be very instructive to compare the degree of immune dysfunction in these two sets of patients. Is it six or seven times higher in ME/CFS patients than in transplant patients? Is that why its present in 6 to 10 times more ME/CFS patients?

      I wouldn't think so. If not, then why is it apparently showing up in such a large percentage of  CFS patients and in such smaller percentages in patients the medical profession in general really does consider immunocompromised?

      An opportunistic virus wouldn't do that. A virus that somehow targeted CFS patients would however. My guess is that XMRV is still a special problem for CFS patients and that it just happens to be in immune compromised patients (along with whatever other pathogens they have) - as well; ie the theory that XMRV could cause ME/CFS is still alive and well.

      My takeaway from this study is that, unless this lab made a big error somewhere, the WPI’s finding of XMRV is considerably strengthened and this study is a big and much needed  win for them.  It shows that XMRV is present, puts into question the findings of the three negative studies, and puts the onus on other researchers to find it. The fact that these researchers did not use the WPI’s techniques to find the virus further strengthens the overall XMRV finding. Check out the discussion here.


    May 17th

    • Interviewing Dr. Coffin - the crew at the Phoenix Rising Forums has been busy. Rrrr - went so far as to contact Dr. Coffin, one at the top retrovirologists in the country, and ask him some questions about XMRV.

      Tracking XMRV Down - What is he and Tufts University doing on XRMV? - Dr. Coffin is looking far, and has not yet found, the exact mouse virus that gave birth to XMRV. He's working with Dr. Huber - who's also studying endogenous retroviruses in CFS. Dr. Coffin seems to be be doing a bit of backchecking on XMRV. We knew that it was REALLY close to a mouse virus and he said he was checking to be sure the XMRV really is in the human DNA and is not from mouse droppings (ie is a contaminant). He seems to be referring his own lab (?) with regard to this since this doesn't appear to be an issue in the Science paper. He did note that the NCI is developing extremely sensitive assays for XMRV in the white blood cells.

      Put That Bug on Trial! - When asked if his thoughts about the Science paper had changed since the negative studies came out he simply replied "He'd feel a lot better if other studies had confirmed it" (To that I say "so say we all" :)). Rrr reported that Dr. Coffin believed XMRV could be a cause of CFS or simply a passenger virus that didn't cause CFS but was taking advantage of the damage caused by what had caused CFS. He also, surprisingly, felt that it was time for a clinical trial of antiretrovirals. (He's far ahead of the curve hear). A successful clinical trial is kind of the ultimate test of XMRV's role in CFS; if it works then XMRV (or another retrovirus) is definitely present in CFS. You can throw away all the negative PCR tests if that happens. Of course it's hard to get a clinical trial going before an Association between XMRV and CFS is proved but he's all for it.

      Comparing the early days of HIV and CFS (only 7.5 months now) Rrr reported he said " The science community is very mobilized since the Science paper" but that things could have been moving much faster if the early studies confirmed XMRV's presence. (Dr. Mikovits too noted that things that the WPI thought were sent to happen were put off after the negative studies appeared.)

      Blood Test Ready....NOW -Rrr asked about a definitive blood test and had the impression that one had just come in and that Abbot labs - the main labs behind the HIV blood test - have provided it. That's a huge step forward and means testing should proceed much more quickly. Interestingly Rrr reported that he said its going to be part of the screening process for the nations blood supply (which does kind of suggest that they're finding it? Why screen for something that's now there...but I may be going too far in my interpretation). Anyway we're going to know sooner rather than later about the association between CFS and XMRV - Dr. Coffin said its a matter of months now.

      Evasive Little Bugger - Since the negative results came out we've wondered if there would be a different strain in Europe that's evading researchers attempts to find it and Dr. Coffin said that 'a lot' of people are trying to figure out if XMRV is more diverse than it first looked. (Remember all PCR does is look for pieces of genetic code - not the whole virus...if those pieces happen to be different....) Check out more of the interview and a discussion here.  Thanks Rrr!
    • Letter from Barcelona - Cristina Montane provides some updates on three new studies in Spain.  The Institute Ferran is getting together a large study (200) that is hewing close to the original Science one; 100 patients will have to have demonstrated abnormalities (probably cortisol/nitric oxide) on the repeat exercise tests - these people definitely have post-exercise problems - and congratulations for the Institute on taking up both the repeat exercise and XMRV findings so quickly. The Institute Vall Hebron in Catalonia, under Dr. Mikovits direction, will be testing 100 people; both groups are waiting for a homogenized test kit to come available.  Finally Dr. Clotet's Retroviral lab is looking for XMRV in 12 patients.

      Cristina closed her email by noting just how important the CDC and NIH's tests are looming; after the negative results researchers around the world are apparently waiting on these groups to know what to think....

    May 13th

    • XMRV Study Picture - we haven't had any studies published for over 10 weeks. Where are we know with the studies? We have 24 studies on the board. We're starting to get an idea of which studies are firm and which are not. The bad news is that we really unclear about alot of studies; the good news is that the list of 'Firm studies' is fairly hefty and contains some real heavyweights.

      No XMRV Found - Imperial College, Kuppeveld, Groom, Joliceur

      Anyone's Guess - Dr. Bell's and Dr. Klimas's three studies, the Panorama Research Institute's Study, the Lloyd study, Barnes Oxford, Montoya's Stanford study, Kiel University study, Pisan study (any reports on these?)

      In the Queue - Dr. Hubert's study and the CDC study are reportedly in the publishing queue

      The Swedish study was reportedly postponed after its lead research was killed in an accident.

      The Firm Studies : the CDC study, the DHHS Study, National Cancer Institute Study, the Bateman/Sing study, the InvestinME/WPI study, the CFIDS Associations Biobank Study, the Bannert (Robert Koch Institute) study, the Huber Study, Columbia/Cornell/WPI study.

      The InvestinME study, ironically - since it was built off the unused funds of a negative study - may turn out to be a really important one, since it is the only other than the DHHS study, which we know is exactly replicating the Science Study. The WPI is providing the blood but an independent lab is analyzing it. It appears to be moving fairly quickly as well. (The CFIDS Association BioBank may be replicating the original study as well).

      Check out the XMRV Study Page here.

    May 11thh

    • Swedish Study Postponed- Several participants on the Phoenix Rising Forums reported that a promising Swedish study planned to finish in Spring/Summer, that was going to look for XMRV in patients meeting the Canadian Consensus Criteria has been postponed because of a tragic auto accident that took the life of the lead investigator.
    • Phoenix Rising Poll Results - Thus far of 28 people taking the culture test for a latent infection poll 53% have tested positive and 47% negative. Some negatives will reportedly turn to positives once the antibody test is ready but it's not clear how many (10%?/20%). Of the 28 people that have taken the poll 70% of people with severe ME/CFS are positive, 50% of moderate to severe and 60% of mild to moderate ME/CFS are positive - no strong evidence yet that severity affects .the likelihood of testing positive.
    • Dr. Deckoff Reports - Dr. Deckoff made a splash when she strongly advocated that very ill patients try AZT now. She included herself in that group and for the last month and a half or or so has been following her own advice and taking AZT and a drug called Isentress. In her latest update she reported that after about 6 weeks on AZT and Isentress she noted a substantial increase in energy allowing her to do errands in town without much trouble. When she added Tenfovir her symptoms increased dramatically.

      She's definitely not a typical CFS patient. Until she had what she called a disasterous course of antibiotics for Lyme disease she noted she had little fatigue but all sorts of other autonomic/nervous system problems.

      According to her blog she stopped Tenfovir. She's following the progress of 8 CFS patients. The sample size is small but she's found that AZT alone was causing 'very modest improvement' and that patients were adding Raltegravir. When she personally went off Raltegavir for five days she found that her symptoms increased again. At least at this point she believes that these drugs definitely 'move the illness' ie cause  improvement but are not 'the answer' - which is basically what you would expect from an off the shelf drug.

    May 7th

    • XMRV Goes Cold or Warm at Cold Spring? - We're learning one thing; when the interest is there researchers swarm to a field like bees on honey. The grant process is generally a long one -most of the work is probably being done using 'discretionary funds' but it is being done. Thanks to subtr4ct on the Phoenix Rising Forums for providing the titles of XMRV talks/posters from yet another retrovirus conference : this time at Cold Harbor, NY - the site, as you may remember, of the CFIDS Assn/NIH Banbury Conference on CFS last year.

      Sandra Ruscetti, an important researcher in the XMRV effort, will be giving a keynote speech at the May 24th-29th Conference. All we have are the titles - and there are alot of them; 20 talks and posters on a virus that was pretty much a niche topic a year ago this time.

      The Joliceur Study in Canada Comes Up Zero - ("XMRV is not detected in Quebec patients with chronic fatigue syndrome"). We don't know much about this study. We believe it was a fairly small study containing 50 patients. We know that the lead author, Z. Hanna - a Canadian retrovirologist, publishes fairly regularly but not at the level of say, a Dr. Silverman of the Cleveland Clinic. We know the study is being presented on a poster - not a talk. We don't know what methodology was used. We do know to be wary of small studies and we know that we should probably not expect positive results from a study that does not replicate the WPI's methods exactly. Basically we know not to get alarmed about the results from this study; if this is a small group using standard PCR techniques then this result would be predicted. Negative studies are not great news but we'll have to learn more about the study before we can assess its importance. 

      Australian Study Does Not Find XMRV in Prostate Cancer - AL Aloia, the author of the study, is an Australian Researcher - so I'm assuming this is an Australian study. Interestingly he/she doesn't appear to have a background in either prostate cancer or retroviruses so his/her connection to this is a mystery.

      More Sensitive Diagnostic Tests on the Way - J Das Gupta, the author of "Development of highly sensitive assays for the detection of XMRV nucleic acids in clinical samples", on the other hand, is a known quantity. A co-author of the Science paper and a colleague of Dr. Silverman's, he's right in the mix of things. It appears the Cleveland Clinic is making rapid progress in its ability to detect XMRV using PCR - which is obviously a rather sensitive topic at the moment :).

      Meanwhile Dr. Silverman is concentrating on trying to figure out what XMRV does, rather than if it's there. His study "Comparison of XMRV infections in humans and rhesus macaques" illustrates the weight this clinic and others have given to XMRV; they skipped over the laboratory rat phase of testing and went straight to the primate phase - an obviously much more expensive, as well as informative animal model. (What a shame it has to be done, though :( ). He's not alone, Qui X appears to have found antibodies in XMRV infected primates "Immune responses in XMRV-infected rhesus macaques—Serological markers of XMRV infection")

      Treatment Pluses - Two studies titles suggests researchers have found compounds and/or anti-HIV drugs that may be able to inhibit XMRV.

      There's quite a few more titles -check them out here.
    • XMRV International "Workshop' On XMRV - for all the stumbles of the past few months for XMRV, the Scientific Community is showing increasing interest in the bug. Dr. Coffin, Dr. Silverman and others announced that the NIH is funding an interactive workshop on XMRV from September 7-9. They apparently announced it now in order to give researchers a chance to clear a time slot for it since the most precise location they could come up with was 'East Coast' USA. Here's some info on it:

      "The objective of this scientific conference is to assemble an international group of scientists, physicians and epidemiologists to present and discuss, in a public forum, the latest XMRV studies on a range of topics including virus-host interactions, cell type tropism, mode of transmission, animal models and the efficacy of current antiretroviral drugs. 

      This meeting will offer an interactive setting where the latest developments in the field can be presented in order to evaluate the state of our knowledge, address controversies, and develop an understanding between experts that will help direct future research."

    May 4th

    • Top Retrovirologists Back XMRV- On the worldwide stage (for retrovirologists :)) at the Centennial Retrovirus Conference in Prague, Dr. Ruscetti of the National Cancer institute and Dr. Coffin, a top retrovirologists, strongly defended the XMRV finding. In a translation of a Dutch report Dr. Coffin reportedly said "People have raised the issue of contamination but nothing is known about at the moment. There is no proof. Much of the research is done at the NCI, in the laboratory of Francis and Sandra Ruscetti. They have a long experience with these viruses and are very cautious." Indeed, both of the Dr's Ruscetti are long-time employees of the National Cancer Institute - one of the most highly thought of institutions in the world. Dr. Coffin also noted a key difference between the original Science paper and the 3 validation studies; the fact that only the WPI study has 'grown' the virus:"None of the negative studies have been published so far, the virus is grown," said Coffin. "Only in the Science study has been done, and that is a very strong point."

      Dr. Ruscetti, one of the co-authors of the original study, evinced considerable frustration as he let loose with a blast probably rarely seen in the staid retroviral world calling the Dutch researchers burial of contrary results unethical and poor Science to boot ""I do not know how they think they get away with this ethically," said Ruscetti. "I do not think this is good science." Dr. Mikovits said she'd never seen anything like it and Dr. Ruscetti apparently never has either. He noted, as Dr. Mikovits repeatedly has, that the WPI, NCI and Cleveland clinic tested XMRV in four different ways and all checked out. The negative studies only looked for XMRV in one way (PCR) using a methodology that both researchers felt was problematic. Dr. Ruscetti also expressed his dismay about what he called a 'whisper campaign' about contamination.

      The WPI and XMRV got a strong endorsement from two reputable researchers. They highlighted one of the Dr. Mikovits strongest points - that the negative research on XMRV is relatively 'thin' while the positive research is 'deep'. There may be three negative studies from three different groups -that does count for something - but those groups took a decidely thin slice at the virus. WPI, on the other hand, took a thick slice at the virus- cross-checking their original finding in a variety of ways. Dr. Coffin and Dr. Ruscetti clearly believe that quality trumps quantity at this point; one 'deep' study is more persuasive to them than three 'thin' studies.



    May 1st

    • The April Surprise - Our April surprise turned out to be a real shocker with Dr. Peterson leaving the WPI and returning to fulltime practice at his clinic. The WPI has remained almost completely silent on the move - the Facebook site posted something and then took it down (transparency is not the order of the day this time ( :)) and no further reports have been made. Although the notice said Dr. Peterson's 'retirement' was 'planned' it was apparently a relatively recent plan; ie Dr. Peterson had not planned to dissociate himself from the WPI when he took on the medical director's job. Whatever the cause of the split Dr. Peterson wishes the WPI well and the WPI wishes him well and we wish them both well. We will all move on from here.

      Does Dr. Peterson's leaving the WPI effect XMRV? It doesn't seem that it should. XMRV's fate has essentially been out of the WPI's hands since the publication of the Science Paper in Oct. As much as we talk and ponder about WPI we should remember that its a very small Research Institute - consisting of a quite small staff. The WPI started the XMRV ball rolling but has never had the capacity to decide it's fate; the other researchers in labs that ended up picking up the ball will determine its fate - Dr. Peterson's departure will have no effect on them.

      A Long Lag Time - Not only didn't we have the much anticipated 'April Surprise' but its now been 9 weeks since the last paper on ME/CFS. It took about 9 weeks after the Science for that first paper to appear and two more followed over the next six weeks. The long lag time suggests the upcoming papers will, hopefully, be more comprehensive.
    • Dr. Mikovits at the IACFS/ME - Pt II: The Q&A session at the IACFS/ME was full of intriguing questions and even more intriguing answers. Dr. Garth Nicolson's question about XMRV infection in family members surely revealed why Dr. Mikovits, so early on, got interested in co-occurring illnesses. She reported that two thirds of the XMRV positive patients in the Science study had a family member who also tested positive. She stated that most of them are ill with another disorder such as fibromyalgia or autism or cancer. She said the rates of cancer in some of these families is frightening.

      (This in itself is a rather bold thing to say - cancer being such a frightening disorder. Just to be clear, although publications on this subject are pretty sparse - there's little published evidence yet that cancer rates are increased in CFS and Dr. Mikovits findings findings - while certainly accurate -have yet to be validated statistically. Of course, it possible that XMRV could play a factor in several disorder; ie. that it may contribute to CFS in one person, FM in another, autism or cancer in another - that's certainly the WPI's thesis. We don't know, though, that XMRV is a cancer-causing virus; in fact a recent study suggests that it may not be as effective at turning on 'oncogenes' as was once suspected. We're still in the conjecture phase; surely, when/if XMRV is validated these types of studies will occur.)

      Those XMRV Experts - in a more humorous vein Dr. Mikovits was asked about those 75 XMRV experts that were reported to meet at the Cleveland clinic in December. She noted she would be 'surprised' (make that very surprised) to learn there were 75 top XMRV researchers in existence at that time. It doesn't take a genius to see how right she must be. XMRV was discovered (and then mostly ignored) by the scientific community in 2006. Until recently its been the focus of a couple of research groups in the US and Europe.

      The Two Big Bugs in ME/CFS - another surprise came when Dr. Mikovits was asked how she felt HHV-6 and XMRV - the two big bugs in ME/CFS interacted. The fact that she has no reason, at this point, to believe that they (or any other bug) interact together at all, is certainly gives rise to some caution about XMRV's role in CFS. She noted it is possible that XMRV infection could disturb the homeostatic equilibrium in the body that kept other viruses in check or that these viruses could send signals that up or down regulate XMRV activity. At least at this point - the WPI's data indicates that XMRV infection does not appear to increase the risk of CFS patients having another infection.

      Was the Past Prologue? Are the percent positive rates remaining the same in people tested after the Science paper? Yes, as was indicated elsewhere - they appear to be; in fact the percent positive rates in co-occurring diseases (apparently FM and autism) appears to be higher than expected - about 35%.

      There's more in the Q&A Session - check it out here.
    • Pen Pals -Annette Whittemore was so incensed with Dr. McClure and Dr. Kuppevald that she posted rather blistering letter on the WPI's website questioning the Groom and Kuppevald's groups integrity. Specifically she noted the two groups had not mentioned that the WPI had found some of their samples to be positive for XMRV. In keeping with this rather public transAtlantic letterwriting campaign the Kuppevald Group posted a letter of their own on their website. They noted the 'serious allegations', wished Annette had been 'professional enough' to talk to them first hand, and noted some 'aggression' they felt was 'unscientific'.

      They stated that Dr. Mikovits had told them at a Lisbon Cyotkine meeting that all the patients in the study had come from Lake Tahoe. (The cohort question again! At the end of their paper, the Kuppeveld group, questioned whether their negative results were due to the fact that they did not have an 'epidemic' group.)

      For their part they noted that they had not received the WPI's reports of positive XMRV samples in their patient set until their paper was already in press. (They also noted that it was rejected after a five week review by Lancet). Interestingly, they noted that the WPI had sent them a positive sample and that the Kuppeveld lab had been able to detect XMRV in it. They were unable, however, to find XMRV - despite 'repeated testing' -  in their samples which the WPI had reported were positive. They also reported that percentage-wise the WPI found roughly the same percent of CFS and healthy controls were positive for the virus. The numbers were far too low for a statistical analysis - just seven samples -  but it was enough, given their ability to detect XMRV in the positive sample the WPI sent over to them, for them to conclude the WPI's had somehow contaminated the samples.

      Then they threw the ball back into the WPI's court stating that they had offered to try and resolve the discrepancy by proposing that the two groups exchange cohorts on Feb 9th! This is just the procedure that outside researchers have been calling for for several months. They stated that the WPI never replied to their request. Yet there's more to this story.

      In the best explication of the controversy I've seen, a Dutch journalist, asked Dr. Mikovits about that positive healthy control. She noted that it could have come from a family contact. (We've just seen Dr. Mikovits report that the rate of infection in family members is fairly high.) She noted that the Mikovits/Kuppeveld groups had communicated frequently - about every three or four days - but that the communication stopped about a week before the publication of the Kuppeveld study in BMJ. The WPI, having sent Kuppeveld materials for a full replication of the Science study (culture, antibody tests, protein tests) had expected the group to replicate the Science study. Whether or not the Kuppeveld group ever intended to do so is unclear, but it is clear that, after the negative PCR findings, they never attempted to go further.

      With regards the Kuppeveld's request to exchange cohorts, it was clear that Dr. Mikovitsfelt the Kuppeveld group was a dead end; she didn't trust the group to fully replicate either their PCR tests or to attempt to replicate the other important parts of the study - therefore she declined to participate.
    • Conclusion: what we need are multiple groups sharing large numbers of patients using agreed upon techniques

      -no more questions about culturing vs non culturing
      -no more questions about not going the whole hog
      -no more questions about cloned samples vs real samples 
      -or good cohorts vs weird cohorts
      -or good researchers vs bad researchers

      Thankfully Dr. Mikovits has agreed to participate in those studies; in the end we'll (hopefully) have an answer that everyone can agree on. I hope they live up to our expectations.

      I would note that neither of these groups - the WPI or the Kuppeveld group - are going to decide the fate of XMRV. Their argument, with regard to that, is almost beside the point. If what we've been told is true about the DHHS study and the CDC study, and if as many groups are studying this as we believe, the work that is being done right now will decide this issue long before they conclude their argument.

      I can't wait for those studies (although I will surely peak at them through closed hands at first).



    April 28thh

    • Dr. Peterson to leave Whittemore-Peterson-Institute! - in a surprising announcement the WPI, in a very brief statement stated that Dr. Peterson is leaving the medical director position at the WPI and returning to his medical practice at the Incline Village. The WPI is beginning the search for a medical director to take over the position when the WPI opens in the fall. No reason was given for Dr. Peterson's departure other than to say that it was part of a 'planned' tranition. Dr. Peterson stated that he was proud to have been part of the creation of the WPI. The annoucement did not state what, if any role, Dr. Peterson will play in the Institute in the future.
    • Dr. Mikovits Talks Again! - Dr. Mikovits is everywhere. The IACFS/ME did a very interesting thing by inviting Dr. Mikovits to answer questions from their members. Not surprisingly, she got some very interesting questions. The first really illuminated what a complex process tinkering with the immune system is. Andrew Bokelman essentially asked -if you give CFS patients something (such as a neutraceutical) that activates the immune system - causing natural killer cells to increase - if those natural killer cells are infected, as has been reported, with XMRV, aren't you just spreading the XMRV infection?

      With every answer we learned a little bit more about XMRV. Dr. Mikovits noted the critical fact that while XMRV may be present in many cells it doesn't appear to be very active in many cells. (We've heard before that XMRV does not appear to be very active in many immune cells - which, of course, brings up the question -just where is it active? ie. what is its tissue reservoir? and what effect, if any does it have on immune cells?). In any case, Dr. Mikovits stated that we don't have to worry about empowering XMRV when we enhance NK cells; the WPI has been able to enhance NK cell killing levels without increasing XMRV replication.

      Sex and XMRV - Dr. John Chia asked how XMRV could be transmissible via blood, sex and body fluid as stated in 'the newspaper article' - when there is little epidemiological evidence of infectious transmission in CFS. He noted that long before HIV was determined to be the cause of AIDS it was pretty clear that sexual transmission was involved; researchers were able to chart the transmission of HIV from person-to-person simply by following their sexual partners. This is clearly not true in ME/CFS.

      Dr. Mikovits stated that sexual, blood and body fluid transmission was only suggested by the Science paper and that newspapers went too far in stating that it occurred. She then noted, though, that unpublished work indicated that XMRV was 'very stable' (ie it can survive in many different environments) and appears to be very 'transmissible'; ie it does indeed appear to be transmissible via the blood, sex and body fluids.

      She didn't answer, why, if this is so, CFS itself does not appear to infectious in nature (ie does not generally occur in outbreaks - and is not usually transferred between say, a husband and wife.) Of course just because XMRV is easily transmissible does not mean that everybody who has it will get sick. It could be quite prevalent in families of ME/CFS patients but does not manifest itself in most people as CFS. The WPI is testing families of ME/CFS patients now.

      Posting a Ride on the Immune System - A few questions ago we learned that enhancing natural killer cell activites does not, at the same time, help XMRV spread through the body. In her answer to a question on the effectiveness of new biotech drugs for XMRV, Dr. Mikovits stated that the WPI does believe that the 'hyper-active' immune system often seen in CFS helps spread the virus throughout the body and she suspects that XMRV may have a 'tissue reservoir' (ie be rapidly replicating) in the lymph nodes. Thus drugs that rebalance the immune system or just turn its activity levels down could be helpful. (This is a tricky strategy; if a revved up immune system is indeed fighting off a pathogen, then turning its activity levels down could give the pathogen the break it needs to spread. If, on the other hand, the pathogen is using a hyper-active immune system to spread - then tamping down the immune system could be helpful).

      About That PCR Test Again... - Nancy Klimas asked why VIP Dx was no longer using PCR? (PCR was, after all, the major finding in the Science paper). Dr. Mikovits reported that PCR was the least sensitive procedure for finding XMRV and that "the realization by the negative studies that only 1 in 1 million resting white blood cells harbors a copy of the XMRV provirus". (Granted that XMRV is less easy to find by PCR than other tests....but its still hard to understand why the WPI didn't realize XMRV was that hard to find until other groups start looking for it? They had, after all, been studying it for a year by the time the first validation study came out.) The WPI's Science article that reportedly answers many of these questions should be out within the week. If Nancy Klimas, a big early booster of XMRV, is still unclear about the PCR issue then you can be sure many other (less positively inclined) researchers are. It will be good to get that Science article out. (Dr. Klimas is waiting for more clarity in the testing situation before she tests her patients)

      XMRV - the Cause of ME/CFS? Does XMRV by itself cause CFS? Or is it one of several necessary factors needed for CFS to occur? Dr. Mikovits stated that XMRV is necessary for CFS but that the WPI's current hypothesis is that it needs partners to cause it. She believes XMRV causes an immune deficiency which allows other pathogens to sweep in and cause the symptoms of the disease. She did leave the door open for XMRV by itself to cause CFS.

      That Immune Deficiency - Do CFS patients infected with XMRV have any signs/symptoms that distinguish them from people who are not infected with XMRV? The 'big' questions just kept on coming. Were people with XMRV different from people who didn't have the virus? This question is another big hurdle for XMRV. In order for it to be a major factor the patients with it will have to be different from those that don't have it.

      Not having the ability to track signs and symptoms in these two groups yet Dr. Mikovits didn't know about those but she did note that of all the immune markers they tested (RNase L, other pathogens, cytokines and chemokines) that only one - Interferon alpha - correlated with XMRV. This, of course, is interesting given the WPI's theory that XMRV causes immune hyperactivation leading to immune dysfunction - which then opens the door to the other necessary co-factors such as pathogens, which take the patient down the same way HIV-associated co-pathogens take AIDS patients down.

      This data, however, suggests that XMRV does not open the door to other pathogen's and it does not play a role in the typical immune abnormalities we associate with ME/CFS. Data like this makes discerning XMRV's role trickier. We would have thought XMRV would be associated with the viruses and the immune abnormalities typically present  in CFS but it's not.  XMRV is correlated with an important immune marker (IFN-a) but that marker has not been traditionally associated with CFS! IFN-a, which the CDC and Emory programs have shown interest in, is known, however, to produce fatigue and many of the other symptoms found in CFS. But IFN-A was decreased in people with XMRV. Since IFN-a is an important antiviral agent then decreased IFN-A could result in increased pathogens in patients with XMRV, which doesn't yet appear to be happening. Anyone not confused?

      My conclusion is that XMRV is trickier than we thought. If its going to be a major factor in CFS its going to have to effect parts of the immune system that have not thought to be perturbed before. (Or it may affect non-immune factors)

      A Big Question! - what percentage of CFS patients are infected? As the time goes on the WPI's estimates of prevalence are rising. At the CFSAC meeting, Annette Whittemore said basically - if you have CFS then you're infected and that seems to be being borne out by the WPI's data. Dr. Mikovits said that 75% of the 400 people meeting the Canadian Consensus Criteria have tested positive for the virus and that there is antibody evidence of XMRV infection in another 10%.

      Another Big Question! (And a bold answer) - Will treatment for XMRV eventually return CFS patients to health? Dr. Mikovits said she was "extremely optimistic that treatment of XMRV or its immune target(s) will restore CFS patients to at least 85% of the original health status even in the sickest of the sick." Why such a bold prediction? Because the medical community has been able to do that with HIV - a virus that is far more virulent than XMRV is and which has more severe effects on the immune system. She noted, quite aptly, that some people are able to recover fully or nearly fully for years without ever having been treated for XMRV - something you could never say about HIV.

    April 23rd

    • Tainted Blood? - the list of countries who would just rather not see ME/CFS patients blood in their blood supply is increasing. The US is waiting for the results of its DHHS study but Canada decided it was better to be prudent than risk possibly further contamination of the blood supply.  Few CFS probably give blood but there are 340,000 of them in Canada.....A couple of days ago New Zealand decided CFS patients blood was hot to handle and the Aussies jumped on board today. The Aussies apparently don't expect a resolution of the XMRV issue soon as they stated they'll review their decision in two years. Interestingly the NZ article states that CFS was first identified in New Zealand by Dr. Peter Snow who fought hard against the 'malingerer's label'. 
    • The AZT 'Crowd?' - yes, the WPI has publicly said do not try AZT until we know more but, of course, some sick patients will be giving it a shot. Plus we hear rumors that a few selected patients at the WPI are getting the drug. LadyBugMandy has been reporting on her AZT/Raltegavir trial on the Phoenix Rising Forums. She hasn't had an easy time of it at all and may have to stop the drug. Another person has not had a positive experience. Meanwhile a doctor with ME/CFS/Atypical MS, who has put herself on AZT, posted an open letter advocating that seriously ill patients should be given the chance to take the drug.

      Open letter to the ME/CFS/Lyme communities. Please disseminate.
      From: Jamie Deckoff-Jones MD

      I am a 56 year old physician with ME/CFS/atypical MS. I have a daughter with ME/CFS/Lyme Disease. I was an emergency physician. After I got sick, I recovered enough to have a private practice. I treated brain injury with neurofeedback and HBOT. In that context, I treated patients with Lyme/CFS/ASD/ PTSD/mood disorders. I am also well versed in complementary, alternative, integrative, functional medicines and bioidentical hormone replacement.

      When I read the paper in Science about XMRV being highly associated with CFS, it was apparent to me as a physician and a patient that this was it. When I realized that the virus is sensitive in vitro to existing safe HIV drugs, I thought and still think that it is a miracle. In fact, I am stunned by the sudden overabundance of caution in the treating physicians. It would seem that nobody wants to try it. Despite being given the key. Never mind that we are a patient population that has been experimented on for decades.

      Frankly, I didn’t see what I had to lose. We are culture positive at VIP Dx. We have tried everything to no avail. So with the assistance of a wise, compassionate friend who is an ID doc, and a smart family practitioner, I started AZT 300mg on March 4 and Isentress 400mg on March 11, both twice a day. It was my intention to wait for some sort of confirmatory data before reporting anything publicly. But watching all that isn’t happening with respect to figuring out how to help the patients, I don’t think that anything should depend on how a few patients do, especially a patient like me who may have been infected for as many as 40 years. I don’t think it is wise to wait while scientists argue about the validity of lab tests. There are too many who need help emergently. HAART is a safe existing protocol for AIDS which includes three drugs which inhibit XMRV in vitro. We even know that the three possible combinations of those drugs are each synergistic in vitro. But, the sickest will die while the scientists try to figure it out, so it seems to me that it is up to the doctors to treat with the information available. As always.

      I believe that there is a rationale for treating the sickest patients now. Physicians are allowed to prescribe drugs off-label. I think they should be testing their patients, at VIP Dx, the only commercial lab right now that seems to be able to find XMRV in peripheral blood, using the methods validated in the Science paper. I would be happy to share with any physician willing to consider treating.

      I certainly don’t expect that it will be as easy as taking a few pills. There is lots of downstream damage that will need to be treated. But treating all of the problems that have been identified over the years in this patient population will likely be more effective for many more patients than it has been in the past. We will finally be able to identify the commonalities and differences in the various neuroimmune cohorts. Always treat the causative agent if you can. Then modify the host environment to the best of your ability so that whatever is left functions at its highest possible level.

      In my opinion, too many of our physicians have gotten caught up in their own ideas and lost track of the goal, which is to get the patients well. As a group, doctors and patients alike, we must support a willingness for the truth to come out, whatever that is. New discoveries have to be incorporated into our thinking as they occur.

      I thought that it would be OK to sit back and let the dust settle. Whenever momentous discovery happens in medicine, there is a flurry of resistance from those who have been made wrong. But this is uglier than that. Now the WPI is in need of funding. Connect the dots. And the band is playing on while we go down…

      I am no activist. I am politically naive. But I know the power of the internet. I know how marginalized we have been as patients. The people at the WPI are our friends. They are fighting for us, when no one has. As a community, we are often too sick to fight. So we have to let other’s slay the dragons for us. We have to support them in any way we can. Read: SEND AS MUCH MONEY TO THE WPI AS YOU CAN AFFORD. Please tell everyone you know. Pull out all the stops."

      Sincerely,

      Jamie Deckoff-Jones MD

      Santa Fe, NM



    April 23rd

    • Dr. Mikovits Talks Pt. III

      Funky Virus - Whatever the problems with the earlier validation studys some of them did contain well known retrovirologists who, as one commentator put it, "do know how to do PCR". So how could they be getting such different results? One possibility, of course, is that XMRV is trickier to find in the blood than researchers have suspected and that small differences in different studies methodologies have made a difference. Another concerns the composition of the virus itself. I asked Dr. Mikovits if slightly different strains of XMRV in Europe could be part of the problem and, she said, after noting that HIV has two strains, and HTLV no less that four (!), that it would be 'arrogant' to exclude that possibility. She also noted that the fact that the XMRV antibody tests sometimes find the virus where PCR tests do not, suggest that a different strain of XMRV could be managing to elude the PCR's grasp. In fact she stated there was a 50% false negative rate on PCR tests at VIP Dx (ie 50% of the tests negative for XMRV by PCR were positive by other tests).

      Still Confident - Dr. Mikovits is clearly frustrated at the lack of positive findings, the financial stress that being placed on the WPI, and the lack of federal funding but she is still confident in the WPI's results stating again that she does not see any way contamination could have played a role in their findings. The WPI is doing two types of antibody tests; one, which is apparently the ELISA test which measures antibodies to the whole virus and is less precise than the Western Blot test which looks for antibodies to a specific protein on a virus. The Western Blot test is essentially a check on the Elisa test and Dr. Mikovits reported both tests were providing similar findings; ie this is XMRV they are finding.

      Busy, Busy - Dr. Mikovits was finishing up two Department of Defense proposals and then was off to Europe to talk to the British Hematological Society, then it was over to Spain to work on XMRV study there, and then to a 100th anniversary of the discovery of retroviruses. That Science article, by the way, should be out in about two weeks.



    April 22st

    • Dr. Mikovits Talks Pt II: The Letter - Annette Whittemore penned a rather strong letter to Dr. McClure a couple of weeks ago. In it we learned that the collaboration between the WPI and the Kuppeveld and Groom study groups was much more extensive then we'd thought. In fact it turned out that samples sent from those groups to the WPI tested positive for XMRV at the WPI's lab. Those groups, however, rejected the WPI's findings and didn't mention them in their report. Dr. Mikovits reported that 3 of the 10 samples Kuppevald sent to the WPI tested positive and one of those was from a healthy control. After Kuppevald ran his own tests and couldn't find XMRV, he concluded that contamination had occurred at the WPI.

      A Collaboration Ruptured - Dr. Kerr had been collaborating with Dr. Mikovits on another project but it's possible, given how upset the WPI was about the way they felt they were treated by the Groom group, that that collaboration is at an end. She felt the Groom group should have attempted to reconcile the discrepancy between their results and the WPI's before they published. She also felt that the WPI should've been kept in the loop about the Grooms groups inability to duplicate their results.  As it turned out they were informed of the study results only a day before the paper was published. It's, of course, possible that Dr. Kerr was under constraints of his own. In any case, it's a unfortunate situation.

      We obviously don't have Dr. Groom's or Dr. Kerr's or any other researchers take on why things turned out as they did. Even in the CDC/DeFreitas saga - which churned up so much controversy - the two groups were talking about their methodology frequently. This was definitely a one sided interaction.

      Those Negative studies - the negative studies have had an impact. Doors that were pretty open aren't closed yet but it appears that projects outside of the WPI that were going to pretty quickly gear up have been put on hold until the dust settles. The WPI is in kind of a strange situation; they have lots of work to do - more work than ever - yet, until XMRV is validated they'll have difficulty getting big federal grants they need. Private donations of the magnitude that they probably need, are difficult to come by in this economy. Money from the diagnostic tests is certainly helping but the research is very expensive and what they need are grants and clinical trials. Six months after the Science paper they have not received ANY federal funding. Dr. Mikovits noted that the federal government was spending billions of dollars on HIV, which affects less than 1 million people in the country yet the NIAID (National Institute of Allergy and Infectious Diseases), the huge pathogen Institute at the NIH, has done absolutely nothing but XMRV.

      The UK Study - on a more positive note - 50 of the 200 patients in the UK study have had their blood drawn and they are a very interesting group indeed. About 50% are homebound and presumably never been anywhere near Dr. Wesseley and his cohort. It will be interesting, indeed ,to see how often XMRV shows up in these very ill patients.

      Part III tomorrow


    April 21st

    • Dr. Mikovits Talks Pt. I! - Dr. Mikovits has been in touch with patients more than any other researcher by several magnitudes and a couple of days ago I got to chat with her on a variety of topics.

      Some questions had been raised about the WPI's two collaborators in the Science paper, the National Cancer Institute and the Cleveland Clinic. We hadn't heard a word from any of them since the just after the Science paper came out. Dr. Ruscetti of the National Cancer Institute did show up for the CFSAC meeting in late Oct of last year but they'd been laying low since. Were they backing away from CFS and XMRV? Had they dropped us in all the controversy? I asked Dr. Mikovits and she said both were still working on the CFS/XMRV connection with the NCI more focused on CFS than the Cleveland Clinic. I was just shown an email from Dr. Silverman of the Cleveland Clinic, however, to a CFS patient who promised that he was working hard on it. Neither of the WPI'S main collaborators, then, appear to backing away from the XMRV/ CFS connection - they're just laying low and keeping their nose to the grindstone -as researchers tend to do.

      WPI? - but what about the WPI? We've heard that they are working feverishly away but was any of this going to show up in print? Were we going to see any papers in the near future? The answser to that is an emphatic 'Yes'! Dr. Mikovits reported they've submitted no less than 5 manuscripts (yes, that's 5 papers) since Feb. One has been accepted and they're waiting on word for the others. Papers generally take quite awhile to come out but they are in the pipeline.

      Papers, Papers - We know that, in the end, that its ALL about the papers. We've heard (for over a month now!) that some papers are in press. Dr. Mikovits stated she knew Dr. Huber's and the CDC's papers were at the publisher and it sounded like she was feeling good about them. (Dr. Huber has recieved a great deal of funding from the CFIDS Association to look for active endogenous retroviruses in ME/CFS). Very early on she was reportedly very interested in XMRV. Because she is an endogenous retrovirus expert and some people have worried about endogenous retroviruses - it would be great to have a positive paper from her.

      Life in the WPI Lab - what is the WPI actually working on? Well, they're apparently putting alot of effort into finding out how prevalent XMRV is in other neuroimmune disorders such as autism, FM and atypical multiple sclerosis. (Dr. Mikovits will talk at an Autism Conference this spring). They're refining their antibody (serology) test (see below) and their 'infectivity assay' (?) and developing treatment protocols involving existing anti-retrovirals (presumably raltegavir and AZT).

      Testing - the testing/diagnosis news now all seems to swirl around antibodies- the immune factors B-cells make that clump to pathogens and gum their works and make them easier for the big guns of the immune cells - the cytotoxic T-cells - to 'blow up'. The big thing about the antibody tests is that positive results simply cannot be caused by contamination - antibodies are produced by the body in response to infection - not to a contaminant placed in a test tube. It is possible for antibodies to pick other viruses but as these researchers bear down on XMRV more and more its less and less likely that any antibody tests they develop are going to pick up something else. Dr. Mikovits reported in one of her earlier talks that Dr. Singh had developed an antibody test that picked up signs of infection in people who'd tested negative for the virus by PCR. We know the WPI is focused on antibody tests - I asked her whether they were using Dr. Singhs tests or one of theirs?  Dr. Mikovits reported that the antibody test they were using was homegrown at the WPI...and she thought it at least as sensitive as Dr. Singhs and my sense was she thought it was probably more sensitive.

      DHHS Blood Study - Its been what, five months or so since the DHHS announced they were going to look for the virus in the blood supply. The Washington Post reported that things were moving along - that they were close to coming up with a test but Dr. Mikovits is on the team overseeing the study and she reported that because the groups are storing the samples in a different way than the original study did - its taking longer to validate everything - don't expect the results in the immediate future.


    April 19th

    • XMRV - A New Paradigm for CFS? Achieving Consensus - Kurt Rowley, a frequenter of the Phoenix Rising Forums, penned an interesting editorial on the process of achieving consensus on XMRV in the CFIDS Associations ELINK. Kurt notes that achieving consensus on a game changing arena - as XMRV could be - is often a roller coaster ride, with many ups and downs manifesting themselves. He also aptly noted how rare it is for CFS to be in the middle of any scientific debate.

      Kurt described a long and drawn out process to get the full picture on XMRV; to what degree its present in the disease and, even more so, to what degree it plays a role in the disease. He noted that early in the process the two sides of the debate tend to get entrenched in their positions. As the research presents itself they tend to modify their positions become closer and closer to consensus.

      Interestingly, the NIH has a process they use to achieve consensus on a topic involving "State of the Science" conferences, that they've used before with CFS. Kurt noted that while retroviral explanations for diseases have often not panned out there are there are some notable exceptions. He then outlined a possible way for consensus on XMRV to be achieved which included full replication studies, more validation studies and more comprehensive studies involving culture and antibody tests. If the XMRV finding is confirmed next would come large-scale population studies involving CFS patients, other disease groups and healthy controls.

      Kurt is clear, though, that this is a long-term process - particularly given the complexity of CFS and the lack of clarity about how to diagnose the disease. He also believes that simply the process of achieving consensus on XMRV will help enhance the publics understanding of the disease and the need for better treatments and more funding. This is a fairly technical but well written and organized article. I've just summarized a small part of it. For the entire paper click here.



    April 17th

    • Dr. McClure talks - Dr. McClure heads up the lab that the Imperial College researchers (Cleare, Wessely) used to look for XMRV. They asked her to help them with the study because she, a retrovirologist, was already studying XMRV in prostate cancer. Prior to this  she had no connection to ME/CFS. Similar to other groups that got in the XMRV search early she runs a diagnostic lab. Diagnostic labs such as Cooperative Diagnostics, ARUP in Utah and her lab, can make a good deal of money if they come up with a good test for XMRV. In retrospect, given their skill set and their focus, its not surprising they were among the first to get into the game.

      The interviewer's stance on the XMRV became pretty clear when he referred to the 'industry' that had sprung up suggesting that retroviruses cause CFS. Dr. McClure stated that she 'rushed' the paper into print because diagnostic tests were being offered and, more importantly, patients were trying strong anti-retro viral drugs.  She has a point here. We now know that after Cooperative Diagnostics came out with their test WPI pushed up their test which, in turn, apparently spurred Dr. McClure to rush out her study - which came out about a month before anyone else's. Given her results she wanted to dampen interest in thise field - which we now know she (and others) did.that meant

      Dr. McClure has her points but then she says "we wanted to put a stop to that because we felt it wasn't ethical". One can imagine what that statement did to Annette Whittemore's blood pressure. Not ethical? The WPI has been very careful not to recommend AZT as a treatment option for ME/CFS. They have repeatedly stated that we don't know enough about the virus to recommend such a powerful, and possibly damaging drug. (One can imagine Annette picking up her pen....Dear Dr. McClure...)

      Dr. McClure acknowledges that a different strain of XMRV may be present in the UK but she keeps the heat turned up when she rather snarkily states that Dr. Lombardi has pointed out this out 'ad nauseam'. That was it for the interview but it came they came on the heels of an and another editorial  and an interview, in which, if memory serves, she called for 'good science' in the future (not this stuff). For a
    • retrovirologist who had no prior interest in CFS, she's managed make herself the voice of the opposition to XMRV.

      Be sure to check out to the particularly discerning comments on the interview.



    April 14th

    • WPI Throws the Gauntlet Down - Yes, the WPI has been frustrated, and sometimes vocally so, regarding the inability of the three XMRV studies to validate the original Science study results. Yesterday, in a surprise announcement Annette Whittemore threw the gauntlet down, so to speak. For sure she did it politely but her proposal that Dr. McClure, one of the co-authors of the Imperial College study, accept the WPI’s help in learning how to find XMRV was the equivalent of that moon a glove slap across the face. In the course of her letter we suspect that the WPI is frustrated at more than the study results; they feel they’ve been done wrongly, that trust was returned with a cold shoulder, and that breaches of professional etiquette have occurred. 

      Dr. Mikovits previously reported that the WPI had extensive discussions with the Groom group regarding how difficult it was to find the virus. In Annette’s letter we learned that the collaboration went much deeper than this. It turned out that both the Groom and Kuppenveld groups sent samples to the WPI -samples which the WPI found were positive for XMRV. After that there was apparently silence - it seems that the next thing the WPI heard from the UK was that there was no XMRV in UK ME/CFS patients. 

      It’s a puzzling situation; the samples were presumably sent to the WPI so that Groom and Kuppenfeld could check the efficacy of their procedures - a not surprising step given the newness of the virus and the fact that researchers were searching for it for the first time in the blood. In fact, in his talk with Dr. Raccaniello, Dr. Goff stated he was ‘amazed’ that no one had yet shared samples and he chalked that up to fact that they had not had time in their rush to publish. Now we learn that samples were being shared - but not being reported- and that the results indicated that both groups ability to find XMRV might have been lacking. 

      We can’t say these groups could not find XMRV because they did internal validation tests which indicated they could find the virus. But the acid test is finding it in the patient’s blood samples and the WPI’s evidence suggested that they were having difficulty finding it there. 
      This must have concerned them yet we get the sense that they made no attempt to get to the bottom of the situation and ultimately discarded the WPI's results. It appears that both groups, for whatever reasons, simply decided that the WPI was wrong. (Perhaps this is why they did further validation tests?)

      Chickens Coming Home to Roost - Now the chickens have come home to roost, so to speak, in a very public way. The WPI has publicly informed the scientific community that a) both groups had discrepancies they did not publish in their paper and b) that the WPI is willing to establish a very transparent procedure to figure out which group was incorrect. Somebody is going to have egg all over their face before this is done. 

      We should be clear that the fact that the WPI found XMRV and the other labs didn’t doesn't mean that the WPI’s results are the correct ones. It’s possible that the other groups do in fact have the correct findings. The WPI’s case, however, is buttressed by a lot of supporting evidence (antibody tests, sequencing tests, the ability to grow the virus) while these other groups have a single PCR study. The fact that the WPI is taking the initiative here makes one suspect that they are quite confident in how this will turn out. 

      Bringing Light to the Darkness? - The way to figure out where the discrepancy lies is to share samples and that is just what the WPI is proposing to do. Their offer to send their reagents and other materials straight into the hands of, what many patients consider ‘the Dark Side’ at the Imperial College is a bold one but does indicate that the WPI trusts these groups to conduct these tests honorably.

      One is getting the feeling that the boil is going to blow in the not too distant future….the big Fed study appears to be about halfway done, the Bateman/Light/Singh/ARUP team is plowing forward with a second study on XMRV, the CDC study is reportedly in press…the quickie studies appear to be over - the big studies are on the way - XMRV is getting more interesting all the time….

      For now the ball is in Dr. McClure’s court.

    April 11th

    • An ME/CFS Researcher on XMRV - Dr. Baraniuk, who was featured in the last Phoenix Rising newsletter, ('Proteins On the Brain: Spinal Tapping for CFS') has penned a review of XMRV in the Current Allergy And Asthma Journal. Dr. Baraniuk is a trained allergist with a heavy interest in autonomic nervous system functioning. His Brain Proteome paper of a few years ago could, if it's findings are replicated, set the stage for a reevaluation of chronic fatigue syndrome, fibromyalgia and Gulf War syndrome.

      Now he's introducing XMRV to the allergy crowd. The fact that allergists are now getting XMRV reviews shows the breadth of interest the virus has so quickly generated. You can see Dr. Baraniuk's focus coming through as he rattles off a list of symptoms common to ME/CFS that are not always noted in reviews of the topic; besides fatigue he mentions non-allergic rhinitis,generalized hyperalgesia and allodynnia (pain), dyspnea (shortened breath) without airway obstruction, drug intolerances, postural tachycardia syndrome and other autonomic dysfunction syndromes.

      Dr. Baraniuk's sentiments regarding ME/CFS are clear early on in the paper "the new finding of XMRV in CFS patients must make us pause at these frustrated and disillusioned victims of medical neglect"! Strong words indeed, that no doubt reflect Dr. Baraniuk's frustrations that getting funding for it (despite the fact that he is one of the few researchers able to get NIH funding for it). When I talked with him he evinced dismay at the lack of funding this disease million person plus disorder gets in the US.

      This was an objective overview and he noted some questions about the virus. The virus's link to prostate cancer, for instance, at least at this point, is believed to derive from 'androgen response elements' in prostate cells that help to activate the virus. Because women don't have prostate cells and the hormonal elements in their cells are differernt, if XMRV is going to be a major factor in this female dominated disorder then researchers are going to have to find estrogen or progesterone related factors (female hormonal factors) that turn on the virus. Thus far Dr. Baraniuk says they haven't. (Dr. Mikovits, in one of her talks, stated that a wide array of hormonal factors can turn on the virus. That information, however, has not been published yet.)

      Dr. Baraniuk also elucidated just how remarkably similar the six strains that have been sequenced have been with just 30 out of 30,000 nucleotides differing - most of which occur in 'nontranslated regions' ie  'junk DNA'. This is DNA that doesn't affect the virus at all; thus with regards to functioning, at least thus far, these strains appear to be completely identical. (The fact that only six strains of the virus have been sequenced thus far should also give us a bit of pause - that's hardly enough to give us a representative sample. The fact that hey are from different parts of the United States does suggest, however, that this virus has evolved very little during that period of time it's been in humans.

      XMRV's potential to cause cancer has been well noted but Dr. Baraniuk (thankfully to my mind) downgraded this possibility stating that increased incidence of leukemia and lymphoma has not been seen in CFS. (Of course, we're awaiting the publication of study from the Whittemore Peterson Institute that found an increased incidence of lymphoma in Incline Village residents with CFS.)

      Dr. Baraniuk closes with some intriguing questions: Is XMRV also infecting the immune cells (microglia) in the central nervous system? If it is - could it be responsible for the cognitive, autonomic nervous system (problems standing, bowel problems, heart problems, circulatory problems) and pain processing problems in CFS and FM? Can it be detected in the cerebral spinal fluid. (Dr. Baraniuk has cerebral spinal fluid sample from his prior studies - is he testing them?) Are healthy people with the virus at risk of coming down with CFS or FM or prostate cancer?

      Most interestingly, Dr. Baraniuk clearly labels the strange fatigue states that occur after cancer, or in lupus or other diseases as 'CFS' - thus broadening the disease greatly! - and asks if XMRV could play a role there as well. Discuss the paper here.
    • The "Quickie Studies" - we've had quite a dry spell study wise. The last study - the Kuppenfeld Dutch study - came out about six weeks ago (Feb 25th) Does this suggest that we're at the end of the 'quickie' studies that focused on banked samples (some of them 20 years old!)? Let's look back...The first study, the Erlwein study with Dr. Wessely and others has turned out to be  notable for how quickly it came out. The original Science study was epublished on Oct. 8th. The Imperial College researchers must have jumped on it that night because less than two months later, on Jan 6th, they published the first follow-up study. It took another five weeks for another study (Groom) to come out (Feb 15th) and then another 10 days for the Kuppenfeld study to come out (Feb 25th). Now it's been six weeks of silence. It appears that the quickie studies may be over..the next batch of researchers may be taking more time, sharing samples, be doing more comprehensive testing or simply not getting the greenlight from their publishers but this substantial lull suggests the next studies will be more substantial.

      How will April turn out? Will it be the 'cruellest month' (aka TS Eliot) or will it turn things around for XMRV? Or will it pass like a mouse in night?
    • XMRV Breaks Out - Whatever happens with CFS XMRV the is certainly enjoying a day in the sun. Papers are coming in every week. Most of these appear to be on the way before the CFS Science paper hit the press. The first XMRV paper in 2009 took all the way until July to appear. Between July and October three more papers appeared. In the six months since then 20 more papers have appeared. Many more are certainly on the way - XMRV has become a minor hit in the research world.



    April 8th

    • Breakthrough in XMRV Testing - We were told that the research community would be all over XMRV and they have been but its still astonishing to see the speed with which they work. Five months ago XMRV was an underappreciated virus that might have some connection to prostate cancer. Now papers are coming out steadily. Its nice to see what the research community can come do when they find something they feel is important....but of course it hurts too.  One wonders where we would be if the research community had portrayed even a fraction of the interest in ME/CFS that it has with XMRV. Of course, the XMRV story is only at its beginning....if it plays a role in prostate cancer or ME/CFS or the blood supply - hold onto your hats.

      In any case a study by Dr. John Petros of Emory University suggests that a huge step forward for prostate cancer patients with XMRV has been made. Researchers have been painstakingly examining prostate cancer samples for XMRV. Now Dr. Petros, using technology developed for finding HIV, reported that he has developed an accurate and sensitive blood test (neutralizing antibody assay) for XMRV that prostate cancer patients. That means if they have XMRV in their prostate he can find it in their blood. The finding was confirmed by two independent laboratories using PCR and "FISH". Its hard to imagine that this test won't apply to CFS patients as well.

      This is a strong finding that indicates that XMRV is indeed only the third infectious retrovirus known to infect humans. It will surely continue to spur interest in the virus. The authors stated that "our report adds to the growing body of evidence that XMRV is indeed a novel gamma-retrovirus capable of infecting humans and that at least some patients with prostate cancer have been infected with XMRV. 



    April 6th

    • Crunch Time for XMRV: Big XMRV Fed Study Ramps Up - Courtesy of the Wall Street Journal we finally got a look at what will surely be the most comprehensive XMRV study that we'll see. It will surely clear up many of the questions surrounding the virus.

      Its a full bore effort- one that probably only the federal government could take on. Six labs will be involved; the Whitmore Peterson Institute, National Cancer Institute, the FDA, the CDC and two others (not mentioned in the article). They'll be doing all the things that haven't been done thus far; first they're sharing samples amongst themselves to determine which tests are the most sensitive and reliable. Rather excitingly, the WSJ reports that that phase will be done in just a few weeks.

      While they're doing that they'll also be testing about 350 samples of different types; some will be from CFS patients who've have tested positive for XMRV, other samples will be spiked with XMRV and others will be from healthy controls.

      A Critical Factor: Importantly all the samples will be blinded; that is, the the codes will be held at a central location while the different labs determine which samples they think are XMRV positive. The codes will be broken and the lab that has the best results wins the 'best diagnostic test' award! Blinding is the most critical test to pass in this process; the first retroviral discovery in CFS lost its way when blinding was introduced into the process.

      The third phase - if XMRV shows up then the group will start going through frozen blood samples from years past trying to figure out when XMRV entered the blood supply, what it's done to people, etc.

      A Solid Foundation - If XMRV can pass the 'blind test'; ie if one of the labs can correctly identify samples with XMRV in them from samples without XMRV in them then XMRV can proceed on a solid - one would think unimpeachably solid - foundation.  Simply finding it in a subset of CFS patients, of course, would be a huge boost to the field. Money would presumably pour in and ME/CFS would gain a legitimacy and recognition that it's never had. Not finding it would also presumably end the search for XMRV.

      Consider the worst-case scenario if XMRV is found: XMRV is found to be simply a passenger virus; it's just along for the ride - it doesn't appear to make CFS patients worse - its just there. Just the fact that it's there in ME/CFS patients but is not present in the same percentages in healthy controls itself says something rather profound about the health and immune systems of ME/CFS patients. Simply finding XMRV should lead to a greater exploration of the viral and and recognition of the immune abnormalities of this disorder. That alone could shift the scientific communities focus on CFS.

      XMRV's big test is upon it. There should be no worries about 'researcher bias'. Two 'friendly' labs, the WPI and the National Cancer Institute are involved. Neither the WPI nor the NCI would have signed off on these studies unless they were satisfied regarding methodology, blood handling and storage, patient cohorts, etc. There were no time frames given; we know that they're already engaged in these studies and some results should come in weeks but it's hard to tell when the studies will be published. We assume that they'll be published as 'quickly' as possible. Its clear, though, that crunch for the XMRV is coming.

    April 5th

    • Virologists Speak! - Dr. Goff, one of the top retrovirologists in the field, taked with Dr. Racaniello about XMRV for almost an hour. This was a rare opportunity to hear what experts in the field felt about the XMRV/CFS connection. Here's my take on what they said:

      XMRV and the Prostate - One way researchers figure out which types of cells a virus infects and which parts of the body it may damage is to determine which cells have receptors for it. Receptors are like hooks  the virus can use to get into the cell and different cells will have different receptors.  Despite XMRV’s ability to grow in prostate cancer cells they do not have high levels of the receptor XMRV it needs  to enter the cell.  So why is it there? Because prostate cells have a ‘transcription factor’ XMRV use to  help it replicate - so if it XMRV gets into a prostate cell there’s a good chance it can start ‘reproducing’.  The researchers were surprised how vigorously XMRV grows in prostate cancer cell lines.

      In fact  researchers have known of murine leukemia viruses - the type of virus XMRV closely resembles -  for quite some time but they didn’t get much interest because once these viruses got into a cell they generally didn’t do much; they were considered  ‘weak viruses’. That was before they attempted to culture in the cells they’re using now. Interestingly XMRV doesn’t appear to do much in the immune cells it has been found in CFS.

      Cancer Virus or Not? - There’s been a lot of speculation about XMRV’s ability to cause cancer given the  propensity  of similar viruses to insert themselves in areas of the genome populated by oncogenes - genes that can turn cells cancerous.  Dr. Goff said, though, that none of the researchers that have looked at the ‘integration sites’ of XMRV in prostate cells have found that it’s been inserted near an oncogene; XMRV’s cancer causing properties are unclear.

      XMRV Jumps Into People :  Given the remarkable similarity between XMRV and murine leukemia viruses researchers have thought that XMRV must have ‘jumped’ into humans recently - within the last couple of 1000 years.  Dr. Goff said that the various isolates of XMRV’ that have been found are ‘unbelievably similar to each other’. He called that ‘very odd’ and stated that there’s something ‘funny about its lack of evolution across a person or a group of people’.  It could mean that replication is slow or not happening. 

      ME/CFS (chronic fatigue syndrome)

      With regard to XMRV and ME/CFS he noted how “It looked very striking and unbelievably exciting if you were in the field” and stated that with regard the present situation

      “All the signs look good and still do look good as far as one can see in the (Science) paper but it’s also true that similar studies with even larger numbers of CFS patients have been looked at….an they’re not seeing it”

      He stated that slightly different strains occurring in Europe could be causing the lack of results thus far noting that 1 bp difference is all you need to miss a strain. He felt, though, that “The CFS connection is up in the air.” He didn’t feel confident to vote one way or the other yet.

      'Politics' - Dr. Raccinelli is obviously a bit perturbed at the WPI rather aggressive defense of XMRV stating  “The people that found it are very vehement that it’s the cause and that everyone else doesn’t know how to do PCR.”

      Dr. Goff responded “Right, I think they’re at least adamant that the linkage is real and they’re coming out pretty strongly about cause and I think that’s a very touchy call to make at this point. There’s no way I would feel comfortable claiming this is the cause of either prostate cancer or any other disease”.

      Dr. Raccinelli also apparently wasn’t comfortable about statements regarding unpublished findings stating

      “I mean they claim to have data from all over the world implicating that the virus in CFS but we haven’t seen that in the literature.” He apparently thought WPI researchers should have been at the big retroviral conference in San Francisco where XMRV was discussed asking “Were they at the meeting CROIX? “ The answer was no but plenty of other conferences are coming up.

      The Best Test? On a more positive note Dr. Goff acknowledged that when viral loads are really low (as they appear to be in XMRV) that antibody tests can be more effective at finding a virus than PCR tests -something Dr. Mikovits has stated. Dr. Goff also noted that if antibody  results are positive they present a strong case for XMRV’s presence stating “It’s very compelling if you do have seropositivity (antibody result) because then it’s not a cause of contamination.”

      How to resolve the different study results? Swap sample; he was amazed that had not been done yet stating

      “Some of us looking at those papers are amazed that they didn’t. I guess that they’re  just working very fast for one thing. They’re trying to get stuff out quickly and they haven’t taken the time to swap samples.  So these studies that have reported zero recovery out of hundreds of samples of course they did the positive controls of clones of the virus so they know the PCR is working at that level but they haven’t taken true samples from someone and shown they can recover it. That is happening now. “

      XMRV’s Effects - He stated one team had followed primates over a year; they found that XMRV levels peaked at one week after infection, then declined to low levels for the rest of the year but that they found it in a lot of tissues.  It’s a real virus …but whether it causes anything…any pathology…..we don’t know.  There’s no dramatic pathology yet.

      It does not appear to kill human cells. One researcher says he thinks he can see some subtle morphological changes in XMRV infected cells but you can’t look at an XMRV infected cell and tell if it’s infected or not.

      AZT: He said he would only take AZT if he knew XMRV was rapidly replicating in him. (AZT attacks the virus during replication; if the virus is not replicating much then AZT is not going to touch it).  At least in the blood we don’t have any evidence that XMRV is replicating much.  IIn fact it appears not to be replicating much. Is it replicating elsewhere? No one knows.

      He stated that in the next year we’re going to get a lot of information. Check out a transcription of the talk.

    • Not a Drug for CFS? - Raltegavir scored well in tests against XMRV (see below) but IslandFinn in the Phoenix Rising Forums pointed out that Dr. Racaniello's November blog suggested that Raltegavirs apparent ability to exacerbate the auto-immune response means that it could be the wrong drug for at least some CFS patients. Check the blog out here.



    April 3rd

    • A Drug for XMRV? Raltegavir - Dr. Singh recently published a paper examining the effectiveness of different drugs against XMRV

      http://www.plosone.org/article/info:doi/10.1371/journal.pone.0009948

      Dr. Singh noted that few antiretroviral agents have been tested against XMRV-like viruses and that the protein structures of HIV and XMRV differ so much that it's difficult to predict which HIV targeted drugs might work for XMRV.

      Dr. Singh took several drugs from each class of the known antiretroviral drugs plus some that are still in the development stage as well as some antivirals, put them into cultures of XMRV and then determined if they were able to inhibit virus. 

      Of the 45 compounds tested four ‘strongly inhibited’ XMRV in cell cultures: RAL, L-000870812, ZDV and TF.  Because low doses of these compounds were sufficient to significantly inhibit XMRV, Dr. Singh suggested patients might be able to tolerate them well.  The fact that combining the drugs together enhanced their effectiveness suggested that ‘drug cocktails’ (aka AIDS) might be a possibility.  Raltegavir worked effectively in four different types of cells and this was the drug Dr. Singh concentrated on.

      Raltegavir (TF) - the first of a new class of anti-retroviral drugs called ‘integrase inhibitors’, raltegavir was approved to treat retroviral infections in October 2007. Integrase inhibitors attack retroviruses after they have entered a cell and prevent them from inserting their genetic material into the DNA of the cell. Because retroviruses replicate by inserting their genetic material into a cells DNA, integrase inhibitors could stop retroviral replication. Because XMRV’s possibly tumor causing effects are believed to result from it’s propensity to insert itself near ‘oncogenes’, Raltegavir could block this process as well.

      Side effects  - the most commonly reported  side effects are diarrhea, nausea and headache. Blood tests showed abnormally elevated levels of a muscle enzyme—creatine kinase—in some patients. Isentress should be used with caution by patients who are at an increased risk of muscle problems like myopathy and rhabdomyolysis.

      A Genetically Homogenous Virus AIDS Treatment Efforts - Dr. Singh noted how genetically homogeneous XMRV appears to be; the most distinct strains collected from distant parts of the US thus far have differed in only 27 out of 8,100 nucleotides (!). This could be helpful for XMRV infected patients because it suggests that XMRV replicates very slowly. If the virus is staying ‘static’ then it’s not evolving to escape the effects of whatever drugs are thrown at. This suggests that the possibility of drug resistance to XMRV is probably much lower than for HIV and that the ‘drug cocktails’ manufactured for virus might be simpler.

      Anti-Herpes Drugs Do Not Work - Several anti-herpes virus drugs (Foscarnet, Ribivarin, Acyclovir, Ganciclovir, Vistide) were found not to be effective against XMRV. It’s unfortunate that she did not test some of the herpesvirus drugs more commonly used in CFS (Gangciclovir, Valaciclovir (Valtrex), valganciclovir (Valcyte)). However, the finding that Vistide was not effective against XMRV, suggests that that XMRV may not be a major factor in those patients who improved dramatically on Vistide.

      Cooperative Diagnostics Drops Clinical Test for XMRV - The CD XMRV test will be only available to researchers henceforth.

    April 1st

    • Dr. Singh Talks. Get your first glimpse of Dr. Singh in a short piece on XMRV on ksl.com in Salt Lake City. Dr. Singh was a key figure in XMRV research before ME/CFS showed up and as we recently noted she is embarking on a large (and probably definitive) study on XMRV in CFS. CBS on the Phoenix Rising Forums - is in the new Singh/Bateman/Light study - and he had this to say about Dr. Singh

      "Dr. Singh is quickly becoming THE action on this. Dr. Bateman was exchanging e-mail with her the day the Science article was published. Dr. Bateman has been supplying her with a "well-defined" cohort of CFS patients. And Dr. Singh is currently involved in a whole series of XMRV studies, each building on the others. They are doing so much that would make absolutely no sense if all they had were negative results. Lastly, it is a bit surreal to be watching Ed Yeates, one of our local (for me) science reporters doing the story. I was writing the local papers and TV stations every day to try and get some attention paid to the Science article.

      I've said this before but it bears repeating, Dr. Singh is at Huntsman Cancer Institute (one of the best in the world) and ARUP (a huge specialty lab) and she remains an adjusct prof at Columbia.



    April 1st

    • Effective XMRV Treatments In the Lab - CFS Since 1998 on the Phoenix Rising Forums has done  a nice job of evaluating laboratory test results on treatments for XMRV. Bear in mind that these are laboratory tests and that tests that are effective in a test tube are not necessarily effective in the body.

      Not Effective:
      • 3TC (lamivudine; NRTI) [1,2]
      • ddl (didanosine/Videx; NRTI) [2]
      • d4T (stavudine/Zerit; NRTI) [1,2]
      • ABC (abacavir/Ziagen; NRTI) [2]
      • foscarnet [2]
      • ritonavir (Norvir; PI) [1]
      • saquinavir (PI) [1]
      • indinavir (Crixivan; PI) [1]
      • efavirenz (Sustiva/Stocrin; NNRTI) [1]
      • nevirapine (Viramune; NNRTI) [1]
      • 118-D-24 (integrase inhibitor) [1]

      Effective:
      • AZT (azidothymidine/zidovudine/Retrovir; NRTI) [1,2] *
      • raltegravir (Isentress; integrase inhibitor) [2] **

      Conflicting:
      • TDF (tenofovir/Viread; NRTI) [1,2] ***

      Notes:
      *AZT inhibits XMRV at a similar concentration as HIV; 0.45microM versus 0.3microM [2].
      **raltegravir inhibits XMRV at a similar but 2.5-fold lower concentration than HIV; 0.82nM versus 2.25nM [2].
      ***TDF at a concentration of 30nM had minimal inhibition of XMRV [1]. In another report, TDF inhibited XMRV at an IC50 similar to but 3.9-fold higher than the IC50 of HIV; 1.48microM versus 0.38microM [2].

      References:
      1. Sakuma et. al. Xenotropic murine leukemia virus-related virus is susceptible to AZT. Virology. 2010 Feb 5
      2. Paprotka et. al. Inhibition of Xenotropic Murine Leukemia Virus-Related Virus by APOBEC3 Proteins and Antiviral Drugs. J Virol. 2010 Mar 24


        3. Check out the discussion here
    • WPI XMRV London Study - this is looking more and more  like a really interesting study. A website has been created for the study participants. This is a very nice sized study (225 patients) of which about half appear to be homebound - we'll get a good look at how XMRV shows up in the severely ill subset of ME/CFS patients. For a discussion on the study.
    • Studies, Studies, Studies! - Interest in XMRV does not appear to be flagging after the negative studies; we've had at least three studies in the past week to the XMRV Studies page. We still have 20 studies we think that are going on that haven't publish their results and there are certainly more out there.

    March 31th

    • CFIDS Association Partners with Glaxo-Smith Kline to Study XMRV - The CFIDS Association its new BioBank to work quickly. Just days after the BioBank was announced Dr. Lapp reported that he, Dr. Bateman, Dr. Klimas and Dr. Gluckman were providing samples via the BioBank to the pharmaceutical company, Glaxo Smith Kline, to test for XMRV. The CAA has been worried about patient cohorts since the beginning. Dr. Lapp stated that the patients in the study will be as close as possible to the patients in the original study. This is the first patient cohort of this type to participate in a research study that we know about.

      This is how the BioBank is supposed to work; the CAA provides the samples - thus cutting down the cost of the research considerably - and the researcher simply tests them. For more on this click here.



    March 27th

    • ARUP - A 'Ripping' Good lab - Tom Kindlon must a ripping good memory as well because he pointed out that the ARUP lab the Light/Bateman/Singh study is using has played a role in CFS before. In fact it played a critical role in Dr. Chia's work with enteroviruses. "The CFS Patient Advocate" is one of my favorite blogs; this is what he had to say about Dr. Chia and ARUP

      "Dr. Chia discovered an antibody test for Coxsackie and Echoviruses that is more specific than other labs. By serendipity, a sample from Dr. Chia’s office ended up in ARUP lab in Salt Lake City - and the results came back quite positive. Upon investigation, Dr. Chia discovered that this ARUP lab does a test that is more specific than other labs. This ARUP test reports antibody levels of Coxsackie B 1-6 and 5 of the 32 Echoviruses. An elevation of 1:320 (1:32) is considered to be significant., especially for b4.

      Look at how much more sensitive ARUP's tests for enteroviruses were than another lab (same patient).

      October 2009, at Focus Diagnostics
      b1 1:16
      b2 <1:8
      b3 1:16
      b4 1:16
      b5 1:8
      b6 1:8

      October 2009, at ARUP labs
      b1 <1:10
      b2 1:320
      b3 1:80
      b4 >1:640
      b5 1:10
      b6 <1:10

      By the other labs count - no infection; by ARUPS count - a massive infection. If you've followed the enterovirus story you know that poor testing has made a huge difference in that saga. Before ARUP Dr. Chia was having trouble proving enteroviruses were present in  his ME/CFS patients. He knew they were there because his treatments were having effect but he had trouble proving it. After he stumbled on ARUP he was able to prove  it and this lead him to take the final step and do gut biopsies which nailed the enterovirus infection.

      ARUP is obviously a very sophisticated lab! Will it play a seminal role with XMRV as well? We shall see. At the very least this is a lab, and a group of researchers and a patient group whose results we can obviously trust; a combination we haven't seen in any of the validation studies.



    March 27th

    • UK XMRV Participants Missing Something? - If you're one of the 225 people in the UK XMRV study you might want to check your spam box. I just got this communication from one of your compadres:
      Some people that make up the 225 patients in the WPI's UK based XMRV study might not yet be aware that they have had an Email from Ed Cutler at Phlebotomy Services International which has been filtered out by their Spam software.Just a note to make you aware that some people that make up the 225 patients in the WPI's UK based XMRV study I had a message waiting from him for over a week and only became aware of it because I was browsing your message boards (Phoenix Rising Forums) last night and came upon a message  (posted by ukxmrv I think) suggesting that we needed to check our spam box if we hadn't heard anything yet."
    • Six months until  the WPI opens its doors....its been five months since the XMRV Science paper...its just around the corner.
    • Different Strains Effecting Results? - Mark on the Phoenix Rising Forums that this interesting piece of information from the CDC. We know that the CDC is doing a quite extensive study on XMRV but we haven't heard anything on it yet. Here they report that a search for XMRV in prostate cancer patients didn't find much but what they did find was genetically a bit different than has been found before - which suggests that different strains of XMRV are floating around out there. This suggests that the conclusion that XMRV is very homogeneous may not be correct and leaves open the possibility that the current tests may not be picking up all the strains. If XMRV is more genetically heterogeneous than thought this would probably push back its 'entry date' quite a bit further than the 40 years that's been proposed.

      Walid Heneine of the CDC From the summary- "The finding of distinct XMRV suggests that multiple strains may be circulating and shows a broader XMRV diversity than currently known."

      Check out the post for a nice discussion by Mark


    March 26th

    • Light in the Darkness: Good News Ahead for XMRV? - A month ago the head Dutch researcher, Kuppeveld, stated that he considered XMRV story over. After what he described as an intense effort to find the virus failed he was folding up shop on it; there would be no more XMRV studies coming out of his lab. 

      No papers have been published since then but it appears that a decidedly different story is brewing in Utah. We had heard that the three dozen or so people who participated in the Light’s fascinating exercise study were brought back to get tested for XMRV. What we didn’t know is that that study has recently been expanded - greatly. Since one thing researchers do not do is repeat negative studies, the only logical conclusion we can draw is that enough CFS patients tested positive for XMRV to make a greatly expanded and obviously much more expensive study worthwhile. These patients, and we don't know how many were positive, appear to be the first patients who’ve tested positive at an independent laboratory. The XMRV story may be over in Holland but it appears to be gathering steam in Utah.

      Luckily, CBS, a member of the Phoenix Rising Forums is participating in the new study and was willing to give us some insights into what's happening. First the new study consists of about 100 CFS patients, hand-picked by Dr. Bateman, and about 200 healthy controls. Dr. Light appears to a major fundraiser for the study - plucking money out of every corner he can. Dr. Singh, a noted retrovirologist already steadying XMRV in prostate cancer, will supervise the analysis of the samples. ARUP - the research laboratory associated with the University of Utah - is providing facilities and manpower.

      When CBS showed up for his blood draws he stepped into a highly professional environment. He signed in and rounded the corner to find a hallway full of techs with stopwatches. As each of approximately 6 vials of blood were drawn, the gloved phlebotomist immediately handed it to a gloved tech who set his/her stopwatch and hustled out of the room to the next location. The collecting receptacles were swabbed with alcohol after each patient. 

      Dr. Bateman’s role in this is interesting. Her video presentation about XMRV several months ago was notable for her sober approach to it is and she appeared quite concerned about how well her patients matched up with the apparently immune dysfunctional patients in the Science study. Although we can't know for sure it appears that something has changed in her outlook on XMRV. She stated that all parties were working around the clock on this. 
      These researchers moved fast - it took them about a week or two to process get several hundred samples. They’re doing PCR, antibody and culture tests. CBS expects to get his results in about eight weeks and the researchers are banking blood as well - so expect more studies to follow this second study if it works out well.

      ARUP and XMRVARUP is by no means an ordinary lab. Employing 2,400 people it is a ‘national reference laboratory’ that specializes in ‘innovative laboratory research and development. The website states that ARUP chooses to provide "highly complex and unique lab tests" The Light/Bateman/Singh/ARUP team will not be looking at one sample multiple times or testing multiple samples from one patient to get one positive result. Nor will they accept ‘dim bands’ on the PCR as positives (a critique given to the Science paper). This will be a one sample one patient, clearly defined PCR result study, and logically this is what we should expect over time as larger, more sophisticated labs further refine XMRV testing procedures.

      Dr. Bateman is well known for her well characterized patients and her fine-tuned sense of the different subsets present in CFS and FM. She stated that she believed this study will provide definitive evidence of how prevalent XMRV is in a broad swath of CFS patients. 

      The Dr’s Light (there are two of them) role in this is intriguing as well. Dr. Alan Light came up with the scintillating study that found greatly increased receptor levels to substances like lactic acid in CFS patients. He is a pain researcher, not a retrovirologist - but it appears that both he and his wife are giving this study every kind of support that they can. We should be thankful for researchers that are able to leap over professional boundaries when needed. 

      The Montoya-Goff Study - CBS is also the patient of Dr. Montoya’s. He noted that Dr. Goff, another celebrated retrovirologist, is working with the Montoya team in Stanford on his XMRV study - another sign that XMRV is still alive and well in the research community, at least on this side of the Atlantic. 

      ARUP and Blood Testing - Please do not try to get your blood tested at ARUP. Dr. Bateman emphasized that ARUP is not open for commercial testing of XMRV and does not want to be flooded with requests for that. 

      Conclusion - While we don’t have any published papers we do appear to have the next best thing; signs that several researchers associated with a reputable independent lab are having success finding this virus in ME/CFS patients and, in fact, are redoubling their efforts to look further. Check out the blog here.
    • New XMRV Study Opens Up - Andreamarie on the Phoenix Rising Forums posted about an XMRV study that just opened up. Massachusetts General Hospital in Boston, MA is doing an XMRV study. I found out about it through a doctor I saw last wk and had my blood drawn today. I was told they are looking for people. I do not know exact criteria but they didn't ask for a direct referral from doctor. I told them I had CFS.

      I was told I'd get the results in a few months but it WOULD NOT go into my hospital record. A staff member drew my blood and a fellow then asked me questions about symptoms. He did make it clear that because a study was being done it did not mean XMRV was the cause of CFS. He was very pleasant and professional.

      The doctor in charge is Dr. Donna Felsenstein but the person running the study is Katie Mooney. The phone no is 617 724 0075



    March 24th

    • Muddied Waters -

      Patients in Action - Just a day after Parvofighter's findings cast doubt on the findings of the Dutch study (see below) Kurt of the Phoenix Rising Forums raised some questions about the original Science study. In January Dr. Mikovits stated that XMRV's very low viral loads made it impossible for researchers who didn't culture their samples to find the virus.  She even intimated if that they didn't want to find a virus. This, of course, threw everyone into an uproar - the small old story was happening again; ME/CFS patients were getting screwed by the medical establishment.

      A close look at the original Science paper indicated,however, that the WPI neither cultured nor activated their samples before they did their PCR tests. While patients (and others) have been bashing the validation studies over the head for not following the WPI’s protocol it turns out that, at least in one important area, they were following the WPI's protocol.  (If they had activated or cultured their samples first they wouldn't have been following the WPI's protocol. )

      The question we seem to be left with is why it suddenly became necessary to culture the samples first in order to find XMRV? Why was XMRV so easy to find in the first group but is so difficult to find in the next? The first thing that leaps to mind is, of course, the makeup of that original patient cohort. Could they have been so sick that they simply had much higher viral loads? It stands to mention that VIP Dx - the WPI’s licensed lab - abruptly shut down for a month in January

      One suspects that Dr. Vernon's focus on the makeup of that original is at least partly due to the no-culture/culture shift that occurred. Her analysis of the original cohort suggested that of the 32 CFS patient samples she could get information on only 12 tested positive on more than one assay (of four) and a third of those patients had been diagnosed with cancer. All  told 13 of the 67 positive patients appeared to have cancer.  This suggests this was a very sick group.

      The WPI, on the other hand, has said that no patients had lymphoma and that further information wouldn't shed any light on XMRV.       Annette Whittemore stated the study participants were randomly plucked out of patient samples in the WPI’s repository gathered from doctors across the US. Again we're at a conundrum. Dr. Mikovits was clear that she believes that no further information on that patient group it is needed and no more information will be forthcoming.

      Kurt has brought forward another more disturbing possibility; that the validation study resifults thus far are correct and that XMRV is not found in CFS…but that something else is. In this scenario XMRV shows up in those original uncultured samples and then disappears in later uncultured samples and then appears to reappear in cultured samples because the culture process itself is bringing something else out patient's blood that looks very much like XMRV.  Its based on the idea that culturing can cause endogenous retroviruses to show up. This is a kind of ‘ inadvertent but possibly very lucky’ scenario in which WPI researchers do, in fact, find an important factor in ME/CFS - just not the one they were looking for. It’s all speculation at this point; with a new set of studies reportedly about to hit the presses we should know more soon. XMRV is at a fork right now; the path it ends up traveling down is wreathed in the fogs of the future - hopefully they'll lift soon. Follow the discussion here.

      It bears mentioning that WPI researchers are still apparently finding ‘XMRV’ in high percentages of CFS samples but in low percentages of healthy control samples. They are also sequencing new strains. There’s also the new antibody test that is reportedly more specific to XMRV than any test before which we believe the WPI is using. These tests are checks on the validity of the original finding; they represent the kind of self policing that the scientific community, if given the resources, is so good at doing.


    • Big Pharma, XMRV and CFS - Walter Anderson has done really a very good article on CFS and XMRV for PharmaExec. He paints a very sympathetic picture of the pllight and promise of CFS; the huge group of largely underserved and ignored patients who really present a real gold mine for pharmaceutical companies if only they can get the research community to figure out what's going on. I loved that he called ME/CFS the only large 'orphan disease'; orphan diseases by definition are diseases that strike so few people that further research is done on them. Although ME/CFS strikes a lot of people it still gets funded as if it was an 'orphan disease'. He also does quite a balanced job, I believe, on XMRV. Check it out here.



    March 22nd

    • The Cohort Question AGAIN! - We've spent alot of time on that original Science cohort, but they're not the only cohort involved. After digging deeper into the cohort from the last Dutch study Parvofighter on the Phoenix Rising Forums has uncovered some disquieting facts about them. We knew that they were defined using the Oxford definition - which is not optimal, for sure - but not necessarily a game changer but what Parvofighter uncovered goes beyond using a poor definition.  

      The samples from that study were gathered a long time ago - prior to the creation of the standard Fukuda criteria that researchers use today. We're talking early in the recent history of CFS when things were even foggier than they are today. Their symptom profile appears to be an odd one; they were clearly ill but in significant ways they just don't look like CFS patients. This is what they looked like.

      Seventy-one percent had muscle pain - fine, but only 51% said they had difficulty concentrating, headache, gastrointestinal complaints and dizziness (?) were pretty common (@45%) which is good but only 43%  had sleep disturbances. Both sleep problems and trouble concentrating seem to be present at substantially lower percentages than are usually found in CFS. Recurrent infections came in at a low 26% and sore throat, one of the cardinal symptoms of the Fukuda definition is down at 13%. Sore throat isn't believed to be as common in CFS as was once thought but its still far more common than 13% in this cohort. Unfortunately postexertional malaise was not part of the symptom picture at that point and we don't know about that.

      In short, while the group does have some similarities to CFS as we know it, in several significant ways this group does not seem very "CFS'ey" - a fact that could certainly complicate a researchers ability to find XMRV in it. This was a study that appeared to almost immediately put the nail in the coffin for XMRV for some researchers but one wonders just how likely it was that it was ever going to find much XMRV at all. Check out the discussion here.

    March 21st

    • One Test To Rule Them All -  Several researchers have proposed that multiple labs do blinded tests of the same samples in order to clear up the confusion. The blinded element is the key. The DeFreitas retrovirus fell apart when it was subjected to the scrutiny of blinded tests. After her first postive internal blinded test she was unable to replicate the results in further public blinded tests. Neither was a lab that had consistently reported that it was distinguishing CFS patients from healthy controls using her test. 

      Yet a blinded test with several labs is probably the WPI's best chance at turning this thing around quickly. If the WPI can accurately distinguish CFS patients and healthy controls using their test while other labs cannot it's hard to believe that the research world won't flock to them. 

      Doing blinded tests is tricky; for sure - with the high stakes involved they require a certain level of trust and a standard protocol and, of course, a high degree of coordination. During the DeFreitas era the CAA had the wherewithal to create a blinded test scheme. Using Invest in ME's funding the WPI and an independent lab are analysing the samples of UK patients. Both labs will apparently be using the same methods as in the original Science paper. Its unclear if they will be blinded or not and given the fact that healthy controls are not part of the study that issue diminishes somewhat in importance.

      In the CAA's blinded trial of the DeFreitas test, the CFIDS Association of America held the codes to all the samples. After the researchers reported which samples were positive the CFIDS Association 'broke the code' and identified who the CFS patients were. In that case about half of the positive results were healthy controls - the test failed. The best blinded tests have a third-party collect the samples (Invest in ME), identify which samples are from the healthy controls and from the CFS patients and then give them all to the two labs.  We assume that the DHHS study must involve doing blinded tests using multiple labs but they're moving very slowly. Blinded tests are the gold standard of the research world. Hopefully someone is doing them. (This is from a blog I wrote -to read more of the blog, click here.



    March 20th

    • WPI Back In Science - The WPI is going back to where it all started approximately 5 months ago - the Science Journal. On their Facebook site the WPI just announced that Dr. Mikovits will address some of the questions about the original study in the upcoming print edition of Science. The patient cohort and methods will probably be addressed. WPI has said that the patients in the study were randomly chosen from a patient database filled with samples from various doctors across the country but it appears that they and/or Science (probably both!) want to make sure that the research community gets it. One would imagine they would also address later statements that they had to search for the virus multiple times in time and space (using different samples from the same patient) in order to find it in some patients. That statement was made after the Science paper came out as one explanation for the difficulty finding the virus in another studies. It will probably, I imagine, also address the effort made in finding the virus in the healthy controls. One hopes it will address why the WPI believes that culturing is required. In any case one can only believe that this is a positive move that will reassure the research community and assist them in their work to validate the WPI's results.
      • WPI Neuroimmune Institute for CFS
    • What is this big beautiful building emerging out of the construction? What else but the future site of the Whittemore-Peterson NeuroImmune Institute. Somewhere in there the WPI will be housed....in just six months.

    March 19th

    • The Buzz is Back! We were down for about 10 days because of website problems but the problem is fixed and the Buzz is back :).
    • 85% positive rates (!). - Dr. Mikovits reported in notes for an upcoming talk in Chicago at Autism One the WPI was getting 85% positive rates in 200 patients it had tested. This did, of course, throw the PR Forums participants in a tizzy. Just which patients was she talking about? We have the original 100 or so patients in the Science. We know that almost all of them tested positive to at least one test for XMRV. And we have Vincent Lombardi of VIP Dx reporting 36% positive rates with about 300 patients from VIP Dx.

      The number appears to be from ongoing studies at the WPI. Luckily someone on the boards is taking part in the studies and she reported that they're usiing the new serology (antibodies) test (developed by Dr. Singh?). 85% is quite close to the almost 100% for the original Science group and siggests high positive rates continue when multiple tests are used. Of course we don't anything about the selection process but given the WPI's latest statements one would suspect these are simply ME/CFS patients.

      Our contact reports this about the study she is in: The study I am in with WPI has included over 100 people. This study is testing not only ME/CFS patients, but many other conditions and includes healthy staff, family members and others. I don't think it is always clear when just ME/CFS patients are being talked about and when more inclusive criteria is being used.

      So far in my study, we have the results of only 20 tests (WPI is planning to run all 4 testing methods on each blood sample), and 11 have been positive by serology. I don't know how many of the 11 positives were healthy, but I do know that the percentage was higher than the expected 3.8% which is causing a bit of concern."

      The Autism-CFS connection on the face of it is a strange one. How can one relate often severely socially and terribly cognitively impaired autism patients to ME/CFS patients? Apparently by looking at study results; Dr. Mikovits reported that both groups share "immune dysregulation, increased oxidative stress, increased expression of proinflammatory cytokines and chemokines, mitochondrial dysfunction and chronic active microbial infections". One wonders if different but somewhat similar immune dysfunctions can, by targeting different areas, have quite different results.

      Shining A Light on the Autism ME/CFS Connection - in an email to a researcher, a couple of months ago, Dr. Mikovits agreed that it probably would have better for her not to mention unpublished results about finding XMRV in autism patients.  It sounds like a paper is in sight now, though, as the document states that she will "show evidence of XMRV infection in ASD and discuss the implications of XMRV infection in the pathogenesis of neuroimmune disease including ASD"      . If some researchers are worried about the status of XMRV Dr. Mikovits is clearly not and she's moving boldly forward into one of the most contentious research areas of all. The autism crowd is organized and active and they want answers.  Could XMRV be one of them? The Conference is May 29th.
    • Dr. Mikovits with the Patients  - Dr. Mikovits may have done more work to indicate with individual patients over the past three months than any researcher position probably has for years. The emails keep coming in. Someone on the Phoenix Rising Forums just posted an interesting e-mail from Dr. Mikovits.

      False Negatives - If you're getting tested at VIP Dx and you're still negative - even after the new testing procedures when in - you're still not a solid negative. Dr. Mikovits stated that only tests done at research labs are definitive right now. Of course if, as she's stated before, if you're positive anywhere then you're positive.

      A new, very fast test on the horizon? Dr. Mikovits dropped this line in an email suggesting that a very fast, very sensitive test could be on its way "We may very soon have a very high throughput sensitive test for XMRV where we could easily do 200 in a week!". In the midst of all this controversy about not finding XMRV its good news that the WPI is continuing to refine their tests. 

      XMRV is to CFS as HIV is to AIDS? - that's the theory the WPI is testing right now. We know that many people who are infected with HIV take many years to become ill and a select lucky few don't become ill at all. Interestingly, Dr. Mikovits said that "But by definition if you have ME you must have XMRV." - a very strong statement indeed!". 

      She also opened the door for different variants of XMRV to be present - an interesting idea given the difficulty so far of finding the virus in other studies. Could the XMRV in the UK be slightly different from the XMRV in the US?. Since the virus thus, far, has been remarkably homogeneous genetically one wouldn't think so. Some of the studies have focused on very conservative sections of the genome, as well - ones that are not likely to change in any variant. Then again, one would hardly think that the first samples of XMRV the WPI gathered would be representative of the population at large. Will XMRV throw us a loop and be more genetically diverse than we thought? Could there be genetic variants in the UK and elsewhere? The WPI is sequencing more strains of XMRV and they are reporting increased diversity.

      Check - Dr. Mikovits also stated that "Maybe the reason others don't find it is because they will not do the BIOLOGICAL VIROLOGY and ISOLATE THE VIRUS like the WPI and VIPDx have done. NO ONE else has even ATTEMPTED the experiments in the Science paper. Electron micrographs don't lie..and a budding virus or immune response cannot be a contaminant..". It would be interesting for the UK or Dutch researchers to explain away the immune response. You can't apparently, drop a virus into a test tube of blood and have the immune system react to it. For one thing - there's are no immune organs to produce the B-cells that produce the antibodies the antibody test is looking for. The antibody test is a check on the PCR test; the fact that the WPI was able to show antibodies were present was an important validation for the Science journals editors. The fact that they were able to grow a virus was another check. At some point you get to the point where its seems statistically unlikely or very (ie very, very unlucky) that all these checks would fail.

      Check, Check, Check - Could the antibody test be wrong? The antibody test was not specific to XMRV. which means that it could be reacting to another mouse virus or perhaps some other entity. I've been told that its possible that the culturing process with the hormones also could have activated an endogenous retrovirus that looked like a retrovirus. But how likely is it that both of these occurred? Then you have the PCR checkpoint the paper passed. Basically it seems that you have to have a series of very unlucky incidents occur for XMRV not to work out.

      Another check are the ongoing studies the WPI is involved in.If contamination was present the WPI should immediately know about it because XMRV would be showing up in both patients and controls in equal numbers and that doesn't seem to be happening. Percentage positive rates have apparently not dropped markedly (check) and and healthy controls aren't all testing positive for XMRV (check); that's all good news for the WPI and XMRV.

      On the other hand we have 3 studies that have been unable to find the virus. Since each used different techniques each study constitutes another check on the WPI's results.Even if these are just validation not replication studies what are the odds that each of the studies made just the right type of 'mistake' that stopped XMRV does not show up? They're not good either. Its a confounding situation either way.

      For more of her e-mail.
    • Dr. Enlander and ESME on XMRV - Apparently on behalf of the ESME group Dr. Enlander posted a communication on XMRV. It was quite critical of the recent studies stating "These groups have rushed to publish unsatisfactory comparative research with anecdotal results, based on small number of ll-defined patients,
      stale specimens and differing research methods"  I don't get the 'small number" criticism or the 'anecdotal report' criticism but, of course. there have been questions about the rest. Dr. Enlander put himself is a bit of a strange position here because he's been working with Dr. Kerr on another XMRV study. Since Dr. Kerr played a key role in one of the 'unsatisfactory' studies Dr. Enlander ended up indirectly critiquing his own partner. Some of Dr. Enlander's patients have reported that he's said that Dr. Kerr has not found any positives in his latest study. Which brings us to...
    • Dr. Kerr's Latest Study - Dr. Kerr was apparently engaged in two XMRV studies and was about to be engaged in a third study when he returned the funding for it. While it's still not entirely clear what's going on - Invest in ME is apparently not interested in clearing this matter up  - my conjecture is that Dr. Kerr has finished (?) the second study (with Dr. Enlander) and failed to find any XMRV. Because the third study was going analyze immune functioning in XMRV positive and XMRV negative patients and he didn't have any XMRV positive patients he canceled third study. We don't the answer to the all-important question - which methods he used in to look for XMRV. We'll know, if and when, Dr. Kerr publishes.
    • Chief of HIV Unit to Head Up XMRV Study in Spain - A top Spanish retrovirologist is heading up a new study on XMRV in Spain. Claraverde, a prominent ME/CFS advocate in Spain is asking for donations.
    • Dr. Sandra Ruscetti - will be a keynote speaker at a Retrovirology Conference at Cold Harbor. Dr. Ruscetti is an expert in mouse retroviruses and played an important role, with her husband, in the WPI's work on XMRV. The fact that she's a keynote speaker speaks to the kind of talent Dr. Mikovits gathered around her for the XMRV work.
    • Andrea Whittemore's Poscard Project - As a birthday present to her mother, Andrea Whittemore has created a 'Postcard Project' to send postcards, letters, photo's, etc. for a scrapbook for Annette on her birthday in April.

       "

      Let's remind Annette that our children, parents, best friends, and other relatives will all be positively affect by our return to good health. From now until April 16, please send thank yous to Annette in the form of postcards, letters or cards from you and your loved ones. Consider having your children draw pictures. Please send photos of you and your family members if you can. If you prefer to send only your own thanks as a patient, we are so happy to have that as well. I plan to place all we receive in scrapbooks (nothing too fancy - just a way of keeping things together). Her birthday is April 26, so please send it in ASAP to: The Family Tree Project c/o Heidi Bauer 3204 Cambridge Drive Huntingtown, MD 20639"

    • Another Birthday Coming Up: Dr. Mikovits Birthday is April 1st. Check out plans for her birthday here.


      • March 9th
    • British Medical Journal Podcast on XMRV - It is XMRV month at the British medical Journal and they devoted their podcast to it. First they had on the controversial but always glib Dr. Wesseley.  He eschewed a psychological approach to the illness and instead focused on 'management' or 'rehabilitation'. Of course, we weren't going to get any plugs for antiviral treatments or anything like that but his management approach: getting away from the push/crash cycle of overdoing it and then crashing, focusing on sleep, etc.. at least as presented here, seemed  very mainstream if obviously limited. The one interesting moment to me came when he noted that while many pathogens can trigger CFS Epstein-Barr virus appears to be particularly apt at doing so and he stated they didn't really know why that was. He noted that in a 50 years or so our approach to this illness may seem very primitive indeed.

      Dutch Researcher: the highlight of the podcast was the appearance of the Dutch researcher leading the last XMRV study. He noted that because he was studying sporadic cases of ME/CFS that his results might not fit 'cluster' cases described in the original Science paper (see below). He stated that they used very high sensitivity PCR's - the same PCR's that the WPI researchers used - and that they looked again and again for the virus and really challenged themselves to find it. Because a fellow faculty member was actually studying XMRV in prostate cancer they had positive XMRV samples they could use to ensure that they could find the virus but, of course, as we know now they were unable to. The most striking thing about his talk was the fact that he'd heard that a good virologist in the US had been unable to find the virus as well. He believed that the original finding was probably either due to contamination  in the lab or to the fact that the original group was from a cluster. (WPI has said they were not from a cluster.) He believes that problems in chronic fatigue syndrome are rooted in the neurobiology in the brain, and that's where his research focus is.

      Epidemiology - Next up was an epidemiologist who noted the epidemiological deficiencies in the Science paper. These are pretty well known now and not really worth going over; few papers are perfect - if the epidemiological part of the Science paper had some flaws then sobeit. Her analysis indicated, however, closely these papers are looked at. The Science paper stated that the patients came from areas where there have been clusters or 'outbreaks'. It seems pretty clear now that while some of these patients may have come from areas where there have been outbreaks at one time, there is no indication that  these patients were the victim of 'outbreaks'. If they had been, however, that could have clearly made a difference because it's certainly possible that people who come down with ME/CFS as the result of an outbreak could have a different kind of CFS than people who didn't. (That does not seem to have been the case here; the patients came from several different physicians across US. Annette Whittemore noted that they were randomly picked out of the WPI biobank.)
    • Phoenix Rising Forum Participants Report Low Positive XMRV Rates From their Physicians - these are all anecdotal, of course, and they don't really fit our polling numbers on the forums, but one forum participant stated that Dr. Levine told her that of 11 patients only one had come back positive for XMRV. None of Dr. Enlander's patients had apparently come back positive either but they were being tested by Dr. Kerr not by VIP Dx.  According to Dr. Enlander's website that paper is being submitted for publication; it appears we have another negative study result coming up. The polling numbers of the forums are about 50% for VIP Dx.



    March 8th

    • XMRV Making Waves - XMRV may be temporarily be underperforming in chronic fatigue syndrome but it's doing quite well elsewhere in the research world. A report in MedPage Today indicates that the virus appears to be transmitted much the same way HIV is - through the blood and semen. At a Genitourinary Cancers Symposium ( once again in San Francisco) Dr. Klein (once again at the Cleveland clinic) reported that semen has factors in it that dramatically (unfortunately) enhance the ability of the virus to infect cells. He noted that HIV works the same way.

      Like other murine retroviruses XMRV also appears to integrate itself into genes that are related to tumor progression and metastasis. The work did suggest that anti-androgen (ie anti- steroid hormones like cortisol) substances do inhibit XMRV replication.



    March 5rd

    • BMJ on XMRV - citing the 'lively' response to their publication of a recent editorial on CFS, the British Medical Journal did what any media outlet would do when confronted with a hot story; they put XMRV on the front page of their journal and packed the Journal with XMRV articles; this was XMRV month at the BMJ. Lively was indeed the word for the 30 odd responses the Journal received, many of them lengthy and most of them taking the Journal to task for another behavioral, CBT promoting editorial on CFS. 

      The UK is as we know ground zero for the behavioral interpretation of ME/CFS The polite but condescending PR speak was, of course, present....the concern over the patients....blah, blah, blah. They noted, which we have heard, their concern over the patient cohort and the controls and the fact that their (and everyone else's) attempts at getting more information from the WPI failed. They went over the negative results and then admitted that they had rushed the last paper through to publication; a paper that in some respects, failed their standards. (An rather odd revelation from a paper called "Let's Proceed with Caution") They closed the piece in a rather snarky way appealing for research that this time, will be good enough. (No one beats the British at the velvet gloved knife in the back :)).

    March 5rd

    • Dr. Kerr Backs Out of XMRV Study - in surprise announcement Invest in ME announced that Dr. Kerr has backed out of study Invest in ME was planning to fund on natural killer cell functioning and XMRV. Dr. Kerr was a member of the second study not to find XMRV in ME/CFS.

      A person on the Phoenix Rising Forums reported  that Dr. Kerr was planning to use the positive samples from the first study for the NK study but didn't have positive samples  so the study was nixed. If that's true it puts an entirely different spin on a story that seemed, based on the  initial information from Invest in ME, that Dr. Kerr simply didn't believe XMRV was present in the UK. Hopefully Invest in ME will clear this situation up. Dr. Kerr is currently collaborating with the WPI on a multi-year study examining novel pathogens and immune functioning in ME/CFS. 

      Invest in ME, is still committed to exploring XMRV's role in CFS and will contribute the money gathered for the study to the Whittemore Peterson Institute.
    • WPI to do UK XMRV Study - A participant in the WPI's Facebook site reported Dr. Mikovits sent her an email stating:

      "We are having an independent phlebotomy company draw samples in the UK in the next two weeks if you or others would like to participate send me your addresses and contact info ASAP. samples will be split and shipped half to an independent trustworthy lab and half to the WPI to determine XMRV status exactly as in the WPI Science study.

      Those who would wish to join this UK study please send your contact details to judym@wpinstitute.org. asap :-) 

    March 3rd

    • CFIDS Associations says Four XMRV Studies Not Enough - The CFIDS Association released a statement today stating that four studies aren't nearly enough to understand XMRV's connection to CFS. They acknowledged the frustration present after these studies but they also defended their critical analysis of XMRV and other studies stating that challenging study design, methods, etc. is is a vital part of the march of science which, of course, it is. At its best the scientific endeavor is like thrusting a piece of ore into the fire, chipping and burning away its impurities until it emerges, purified, with diamond-like hardness. The WPI has not yet commented on the latest study and the CAA also warned that they may not continue to comment on every negative study that comes out.

      After the abuse the organization got on their website and elsewhere for last analysis of the XMRV finding, this is hardly a surprise. A vocal minority of patients greets any negative assessment of XMRV as being something that borders on 'traitorous'. One blogger was so irked that somehow she managed to turn a critique of the XMRV study into a claim that the CAA was supportive of Dr. Wessely's efforts. Never mind the fact that the organization has never funded a CBT program and has easily funded more research on viral pathogenesis than any other support organization - in a heated environment like this the facts hardly count. It's difficult if not impossible for any support organization to comment critically and responsibly in an environment like this. Better to just bow out of the situation.

      Unfortunately doing that leaves the rest of us without one of the few informed voices we have. Few organizations, in fact, have dared to offer their analyses of the situation and the ME Association -which has its concerns about XMRV - has received similar (if less virulent) responses.  We've heard virtually nothing from the IACFS/ME or MERUK or other organizations probably because they know what to expect. For more on the CAA's statement click here.



    March 3rd



    March 1st

    • Third Time Not the Charm - I recently posted a blog on the Dutch XMRV study results and a few other XMRV issues.


    • Serology Test Results Starting To Come In - A participant in the Phoenix Rising Forums recently posted that she recieved her antibodies test result from Gordon Medical Associates (medical group working with the WPI). The test is not available to the public (she's part of a study) but this indicates it could be available fairly soon. My understanding that Dr. Mikovits believes this is, more or less, the definitive test for the virus.  She has reported on several patients who were negative for the virus using PCR who were positve using the antibody test. I believe she's been working with or is in collaboration with Dr. Singh in Utah on the test. Dr. Mikovits also said that the author of the big prostate cancer study that found no XMRV in Germany is rechecking his samples using this test. Below is the note this patient got from Gordon Medical Associates.

      I know you have been anxiously awaiting your XMRV results. We finally got a few initial WPI results, and your serology has come back positive. I think you know that serology does not necessarily indicate active infection. We don't yet have the other three test results for you, but they are being run.. . . We don't know yet what to do about it. Dr. Mikovits assures me that everyone who is positive will be given the opportunity to participate in further trials. We are taking this quite seriously, and we will be looking for what, beyond what we already do, would be most helpful.

      You are free to share your results, but people should know that we got very few results       in so far. Some were control samples we sent in, so we don't have many patient results. They will continue to come in over time. Dr. Mikovits has been so busy speaking that it has been hard to do the testing. The speaking is good, because it brings awareness and money, so we need to be patient for the next step, but at least you have the beginnings of an answer for yourself.       Check out the discussion here.
    • Another Licensed Lab for XMRV Testing? - Forum participants also reported that RedLabs is working with the WPI to develop testing using their same procedures.
    • National Cancer Institute News - Dr. Sandy Ruscetti was, if I remember correctly, a co-author (with her husband) of the Science paper.  (She is also the head of the Retrovirological Pathology Division (Cancer section). She's a key person in the field as she's been studying how mouse retroviruses (like XMRV) cause neurological disorders and cancer in mice for years before XMRV poppped on the scene. She's now applying that knowledge to XMRV. On her NCI website she reports that she is developing a rodent model for XMRV that will allow researchers to test the efficacy of drugs against the virus.

      Most interestingly she's examining how XMRV could cause its effects given it's lack of replication and low viral loads in the cells in the blood. She believes the proteins that virally infected cells put on their surface to indicate to the immune system that they're (in effect saying 'please kill me')are triggering an aberrant immune response that may be producing an neurotoxin.

      Dr. Mikovits connection with the Ruscetti's is so intriguing. What is the statistical chance that she would leave the employ of Dr. Ruscetti at the NCI and hook onto a mysterious virus in ME/CFS patients that would turn out to be Dr. Ruscetti's wifes speciality. It's unbelievable. If XMRV works out Dr. Mikovits was the perfect person to find it.
    • WPI Opens Blood Transfusion Study - The WPI is interested in people who got ME/CFS sometime after receiving a blood transfusion. Simply fill out their research questionnaire and put blood transfusion in the applicable box.
    • Cheney/Mikovits Q&A video Available - The video of the Q&A is now up.

    Feb 26th

    • Third Time Is Not the Charm - Dutch XMRV Study Comes Up Negative - A small study found zero evidence of XMRV in chronic fatigue syndrome patients. This was undoubtedly the weakest study of the bunch; it used quite old samples and a watered down criteria and it involved a researcher reportedly committed to cognitive behavioral therapy. The furthest thing from a replication attempt an editorial accompanying paper nevertheless asserted that the methods should have been sufficient to detect the virus if it was there.

      All  of the early "quickie" studies appear to have their problems. Could those problems all amount to 'zero results'? We'll know when more comprehensive studies come out. We're still waiting for a study from the US. Dr. Mikovits stated that she expects some National Cancer Institute studies to be out shortly.

      Dr. Goff, someone associated with the process since the original paper, stated on Dr. Racanielo's blog that what's needed now is for different labs to test the same samples; that is, labs should find people who tested positive for XMRV via WPI or VIP Dx and test them. The CDC is reportedly doing this now.

      The WPI has not responded yet but it seems likely they'll simply state that unless someone follows their is procedures they are not going to find the virus. Dr. Mikovits reported that she's not worried about these validation attempts; as soon as someone uses the WPI's methods she expects they'll get the same results - time will tell. Check out a discussion here.

      The ME Association believes this third study considerably darkens XMRV's potential for being a major factor in chronic fatigue syndrome stating "these three negative studies now place a very serious question mark over the proposition that XMRV is present in a significant proportion of the ME/CFS population and that the infection plays a significant role in most cases of sporadic ME/CFS." With regards the different procedures used by the different studies they stated "the various laboratory investigations for finding XMRV have been carried out in very reputable microbiological research centres and involved retrovirologists of international repute."

      They believe the problem lies not in different cohorts or different geographical spread of the virus but in the laboratories doing the testing and urged that the same samples be sent to and tested by the variety of different lands. They also stated that "the MEA Ramsay Research Fund is very willing to consider funding high quality research proposals".

      Whereas they may at times take some flak for doing so both the ME Association and the CFIDS Association of America should be acknowledged for their willingness provide their analysis of what's going on to the patient population while other groups (MERUK?, IACFS/ME) have hung back. Remarkably, the our professional research organization (IACFS/ME) has contributed little or nothing to the discussion on XMRV.

      Ongoing 'Study' Continues to Find XMRV - one fact that is not being mentioned is that one group has been and continues to find XMRV - daily - that's the VIP Dx labs.

      I had heard that VIP Dx shut down because they couldn't find the virus anymore -which suggested that it was a contaminant and that the contamination had been cleared up; ie no more XMRV. So I asked them about that and this is what they said. 

      Of course we have to bear in mind that one laboratory - VIP Dx - is finding XMRV all the time. I had heard that they were no longer able to find XMRV using PCR so I asked them. This is their answer.

      There is so much MIS INFORMATION. In no way did VIP Dx stop testing for XMRV using PCR. The culture is done by a PCR method. We streamlined the testing to avoid the high costs that doing both the first run PCR and then the extraction and culture had. We still extract and then grow cells for culture and run the culture test. By streamlining our processes, we have developed a test method that gives higher sensitivity at a cost savings that has been passed on to our patients. Our license agreement with WPI includes consultations and quality assurance by their researchers that we are running the best and most sensitive test available at this time. This high sensitivity method is producing good results in detecting the virus.
      Feb 24th
      • The CFIDS Association webinar on its research program is up on YouTube. There wasn't much on XMRV, of course, but it was fascinating look at what is turning out to be a very innovative research program. It was a nice break from all the turmoil surrounding XMRV. You can find it here.
      • Dr. Mikovits has been answering emails and she answered one of mine. We heard rumors that the CDC was up at the WPI- that was untrue but the WPI has shared it's reagants and antibodies, etc. with them. The CDC is apparently contacting other labs as well for their specimens and doing extensive testing.

        Dr. Mikovits reported that the vaunted DHHS study is still, 3 months later, in the 'design phase', which hardly suggests the government feels any urgency about it. Other agencies within the govt. are moving quickly. The CDC is acting on its own and Dr. Mikovits reported that she expects the NCI (National Cancer Institute) to PUBLISH SEVERAL PAPERS SOON both on XMRV in CFS and prostate cancer. Dr. Mikovits, of course, hails from the NCI.

        In her email she seemed both a bit exasperated and confident stating "we don't lose much sleep worrying about replication, we are certain that once someone tries to do it as in Science paper (they) will find it". The UK researchers didn't communicate with Dr. Mikovits or the WPI but its hard to imagine that she's not in touch with her former colleagues at the NCI researchers - given that her confidence is a good sign perhaps some positive papers are on the horizon. She also said that the "HIV docs get it 100%"

        The WPI has been questioned a bit for putting a test out so early. Dr. Mikovits clearly stated that the appearance of the Cooperative Diagnostics test, just a week after the paper came osiut, pushed them to bring out a test earlier than they had planned. She said they asked them to cease and desist and they refused. CD has its proponents; a member of the Forums has been in touch with them extensively -and is impressed with their work; only time will tell how the CD situation shakes out.

        She also stated that based on their facts so far it seems that XMRV is more prevalent in the western US than the eastern US. The fact the XMRV samples were so genetically was suspicious as that can imply they originated from one source (a contaminant) at the WPI or the Cleveland Clinic's One theory posits that a particularly powerful sample of XMRV could have escaped contaminating the lab and the CFS samples (but somehow not the healthy controls?) or that the problem originated at the Cleveland Clinic. Dr. Mikovits said, however, they now had 200 strains isolated and they're sequencing them and finding more variation than in the first six.
      Feb 22nd

      • More From the San Francisco Retroviral Conference - The Forum participants are continuing to dig up more info on how XMRV fared at the big (apparently one of the biggest) retroviral conference in San Francisco.

        Emory University is apparently big in hunt for XMRV. We know that XMRV is able to infect cells called fibroblasts in the prostate but that epithelial cells express a lot of antigens (markers on their surface suggesting that they are infected) as well. Dr. Mikovits talked about an amino acid 'loop' that XRMV used to gain entry into cells. This team showed that fibroblasts had this loop but the other cells - which appeared to be infected - didn't, which suggested to them that XMRV has more than one way to get into a cell. What's so interesting about these other cells? They happen to be smooth muscle cells; these are cells  that dot the linings of our blood vessels and tell them to open up or constrict. Researchers have conjectured the blood vessel problems could cause many of the abnormalities in the brain and elsewhere in CFS - an intriguing idea given that XMRV can apparently infect them.

        This group is also looking at RNase L. RNase L has not appeared at these early stages to determine IF one is infected but thiese researchers believe it could determine which cells are infected.

        There's much more coming from the conference. This conference and the months ahead are clearly going to be head turners for all of us - not just in the things that are learned - but in how quickly they are learned. It looks like we're going to see what scientific community can do about an issue it wants to study. It may be that we'll know more about XMRV over the next year or two that we know about chronic fatigue syndrome - a sad even tragic statement in one way but a promising one in another. Stay tuned.


      Feb 21st

      • Complete Mikovits-Cheney Transcripts Available - it was an interesting if partly inaudible talk but the transcribers on the Phoenix Rising Forums somehow cut through the interference to produce a clean copy. You can find the first half here and the second half here.
      • San Francisco Retrovirus Conference XMRV Updates - XMRV infection in primates has thus far not produced any visible symptoms - no fevers - no real suggestion of an infection. Abbott Diagnostic researchers (not the Abt association with the CDC) have developed antibodies to various proteins on XMRV and have been able to detect them in humans but in only a very few of them (3/2851 blood samples) - which doesn't nearly, of course, reflect the 4% prevalence in healthy controls in the WPI study or the 1.5% prevalence in the Japanese study. Dr. Hackett noted that could reflect the virus's life cycle (was is hidden?) or the time between infection and disease or other factors. (These may be the viral reservoirs Dr. Mikovits was talking about.) ifAbbott Diagnostics has been interested in developing a diagnostic test for XMRV for about three years.

        Neither Dr. Coffin and Dr. Goff are jumping ship after the two negative studies; they've seen the ups and downs of retroviral research before. Dr. Coffin, in fact, appears to be an enthusiastic about XMRV as ever stating "There is no question I think that the virus is real and that the virus is infecting some numbers of people. And it’s VERY (Coffin's emphasis) important to figure out where it is going as far as all of its disease associations are concerned… it’s very early days… if you think back to 1983 and what it was like with HIV, how uncertain things are, how long it really takes to grind the sausage (!) and come to a consensus to understand what’s really going on…We’re still in a pre-consensus stage with this virus, and although it’s annoying and confusing, it’s really exciting."

        From Dr Goff: “We know very little about its mode of transmission. We don’t have any reason yet to be excited about any pathology but it’s certainly something we want to pay attention to and make sure we’re not missing anything.

        ... And so we live as humans with a lot of viruses that are non-pathogenic or that are not detrimental to the population… ( think people want to know a lot of simple things. It would be great to know the origin – if it was a mouse…We’d love to know the tissues in which it replicates, and we know a little about that now because we’ve studied the virus in culture....the most important maybe is the prevalence in the human population, which we don’t know….

        Interviewer: Are there any other colleagues working on this, or is there some sense of urgency, or just casually looking at it…

        Goff: The NCI is pretty serious about it, they don’t want to miss anything. And they want to play a role in identifying the properties of this virus and its potential risks. So they’re pretty serious about it. The range of anxiety is from very mild to the worst scenarios: “Gosh, do we need to be worried about it getting into the blood bank. Do we need to be concerned if it’s really causing a certain subset of prostate ca. And the latest is the potential link reported last year of an association with CFS which would be very exciting because that’s a disease that has struggled to find a viral cause.

        Interviewer: So that might be the cause?

        Goff: Could be…I talked about the behavior of the virus in culture which in our hands is quite vigorous. It’s a very easy to grow virus in the right cell types. Several of the talks today talked about some of the behavior of the virus, for example it’s androgen responsive, or GRE responsive. Hormone responsive – the receptor that it uses. Both of which bear on cell types in which it can be found. The most recent exciting work of course is the discovery in Chronic Fatigue Syndrome and that too is very controversial. Some people are finding it, some not. I think that will have to be worked out in the coming months and years. " (thanks to Parvofighter for the transcriptions).

        The first media report on XMRV from the conference appeared on MEDPage Today


      Feb 20th

      • The Mikovits Cheney talk had good visuals but problematic audio with Dr. Mikovits sounding at times like she was talking through a metal funnel but clean transcriptions of the talk by the erstwhile Phoenix Rising Forum participants are already going up. Check the first out here.
      • Retrovirologists Speak - We have video from retrovirologists at the 17th Retroviruses and Opportunistics Infections in San Francisco talking about XMRV. Dr. Goff reflected on how easy it is to grow XMRV in the right cell types - an important finding because that allows researchers to intimately study the virus. The fact that the virus is easy to grow in hormone sensitive cells is important because those are the types of cells that the virus will probably be found most readily in the body. (This apparently suggests that immune cells will not be the main reservoir; ie the main locus replication in the body, and it, of course, fits with the finding of the virus in prostate tissues).

        The next speaker's short presentation suggested that the research community is vigorously going after this virus. Her work involved Emory University in Cleveland Clinic (CC collaborated with WPI on the Science paper). It's very exciting work. The NIH has talked about the need for an animal model of CFS for many years; this is essentially an animal they can give CFS to and then study it in detail to try unravel what's going. They've ever done a darn thing about it - no surprise there - but the Japanese are using a rodent model to study this disease. Rodents are cheap and easy to work with but this group is already using a primate (rhesus monkeys). Primates, of course, share many more characteristics with humans than monkeys do and they're also much, much more expensive. The fact that this Emory University researcher is already using primates suggests they're quite serious about XMRV.

        They're looking at these monkeys very carefully - she just gave us a little glimpse of what they've found - but thus far XMRV is setting up camp in the lymphoid organs and the reproductive organs (prostate, testes, cervix, vagina)with of these animals. The lymphoid organs (spleen, thymus, bone marrow, etc.) create lymphocytes (among other things) - the white blood cells the WPI was studying.
      • Groom Study Issues - We've been digging deeper into the Groom UK XMRV study on the Phoenix Rising forums with the assistance of members with technical expertise in this area. Questions regarding the necessity of culturing the cells start to increase viral expression - before the PCR is done - have come to the fore. My understanding is that there’s only one reason to culture cells and that’s to up the levels of a low level virus. The Science paper has three sections where they culture the cells; they obviously did that for a reason – yet the Groom group ignored it and simply used unstimulated cells.

        After the fact it seems inexplicable - at least to a layman - that they could have ignored such a fundamental aspect of also wonders why after their hundreds of samples started to come up negative why they wouldn't start culturing cells to see if that made a difference? Perhaps they thought their increased sensitivity would enable them to find the virus regardless of whether the cells are cultured or not. Hopefully we'll get answers to these questions at some point.

        Someone on the Phoenix Rising Forums just posted a list of standard blood isolation and amplification procedures for HIV http://forums.aboutmecfs.org/showthread.php?3133-XMRV-CFS-UK-study-II/page52 and stated that the WPI followed most of them and the UK groups followed few of them. If you look at the methods sections of both papers you’ll see that the methods section for the relevant procedures are longer in the WPI paper than in the UK papers.
      .

      Feb 19th
      • Cheney Clinic - the latest XMRV finding has deterred the WPI not at all; they appear confident in the strength of their findings and Dr. Mikovits will take all comers via speakerphone with Dr. Cheney. Dr. Cheney has limited questions to Cheney Clinic subscribers but Andrea Whittemore will take yours and pass them on at andrea.whittemore@wpinstitute.org.
      • The video from Dr. Mikovits talk at the Cheney Clinic is still not up. It should appear here at some point.
      • A Guide to XMRV Research: the WPI Answers Back - the inability of the second UK XMRV study – this time from a ‘friendly’ research group headed by Dr. Groom – to find any XMRV in a very large sample of patients was rough news for sure. The ME Action Group in the UK took a rather resigned tone in their response while Dr. Vernon highlighted a few methodological issues but mainly concentrated on questions about that original cohort. Neither presented much good news for CFS patients as a cohort answer to the current problems would mean the virus is only present in a very select subset of patients.

        In their response to the latest paper the WPI defined the pitfalls they believe researchers face in validating their work – thus basically giving them a guide on how to find XMRV – and doing everybody a big favor.

        No Replications Studies Yet Done: They noted that no one has yet attempted to replicate, i.e. exactly duplicate, their original study. In the best of worlds, of course, a true replication study isn’t necessary and is, in fact, irrelevant. How one found the virus, after all, is not particularly important; pathogens can be uncovered by several techniques and researchers typically use different techniques to validate the presence of a pathogen. In fact, a positive validation study using a different technique is considerably more valuable than a replication study because it definitively demonstrates the pathogen is there. It’s only when the validation studies are unable to validate a finding that the issue of a true replication study becomes important – as it now has.

        Looking Back – This replication/validation issue was prominent in Dr. DeFreitas retrovirus of almost 20 years ago. The CDC and Gow teams were well versed in retrovirology and had used standard procedures again and again to find viruses. Given their track record they felt little need to change their procedures. (Ultimately the CDC did at least to some degree). But Dr. DeFreitas felt her bug was different. Given her inability to replicate her results she may have been wrong; the question now is whether XMRV is different as well.

        Both UK studies used standard XMRV samples to ensure they could find the virus – and their results indicated that they could – but they couldn’t find it in the CFS patients. It may be important, though, that outside of one Japanese study these are the first attempts to find XMRV in the blood and researchers are treading new ground here.

        We know that two US prostate cancer studies found XMRV but two German ones did not. We know the German prostate cancer researcher is redoing his study using a different technique. It’s clear that, irrespective of CFS, the field of XMRV research (as small as it is), is quite muddled at this point – perhaps we shouldn’t be so surprised about the bumps in the road encountered thus far.

        XMRV in prostate cancer and CFSThe WPI took the UK study to task somewhat for not using their reagents, blood, etc. stating that there is only one way to look for XMRV in the blood that’s been validated and that’s their approach and they have a point. The WPI was the first group to ever look for XMRV in the blood and they validated their results as best they could using the Cleveland Clinic and NCI labs. To be fair the Groom study researchers, some of whom have long track records in CFS research, didn’t have any reason to think their procedures wouldn’t work since apparently they do work for most viruses. It’s possible that both they and the Imperial College researchers underestimated the difficulty of finding this virus in the blood.

        To their credit they were careful not to overstate their case simply stating in the paper they were unable to find XMRV DNA in their samples and not making broad conclusions about XMRV and CFS. Once the paper came out they’ve stayed out of the spotlight – - they appear to be waiting to see what other studies turn up.

        The WPI’s Issues

        Most of the issues pointed out by the WPI don’t appear by themselves to be able to account for the differing results in the UK. String them together, though, and you get an interesting scenario.

        • Blood Harvesting and Storage – The idea that different blood storage and harvesting procedures could’ve altered the results seems possible but seems unlikely (to this laymen) given that the Groom study used three cohorts from three locations -each of which could have used different storage techniques. We know that XMRV is robust enough for Dr. Peterson to be able to pull XMRV out of a 20 year frozen sample but the possibility does remain that the Groom study inadvertently used blood storage techniques suitable for other viruses but not for XMRV. Laymen’s Conclusion – possibly a significant factor but not likely.
        • Different Patients - The idea that the WPI had one set of patients and everyone else had a very different group has come up again and again. The very large size of the British study with patients from several different groups appears to make this scenario an unlikely one (and a decidedly unattractive one since then XMRV would apply only to very special patient groups.) On the other hand some differences in patient selection could start to lower the prevalence rate.Laymen’s conclusion – not ‘It’- but a possibly a contributing factor.
        • Different Geographical Prevalence - that XMRV is simply not found in the UK (but is found in the US and Japan) seems have little plausibility given the fact both Dr. Mikovits and VIP Dx labs have stated they’ve found XMRV in samples from UK patients but it’s certainly possible that XMRV could be less prevalent there thus driving down the prevalence a bit (more?).Laymen’s conclusion – not It either but prevalence rates could be lower – we just don’t know.
        • Very , Very Low Levels of a Very Difficult to Detect Virus – While the other issues could reduce an investigators ability to find the virus with the exception of the blood storage issue it’s hard to believe they could result in being unable to find any XMRV in a large group of patients. This low viral level issue seems to be more significant, however.


        The WPI did two things the other groups didn’t do to find the virus.
        • They Usually Grew the Virus in White Blood Cells First in Order to Increase its Numbers. (This presumably involves hitting the white blood cells with a substance designed to enhance viral replication). Dr. Mikovits reported earlier that while XMRV appears to be able to readily infect immune cells it simply doesn’t have the tools to replicate readily in them – hence its viral loads are expected to be low. Not culturing white blood cells first could, then, reduce prevalence rates markedly – but note not completely – as the WPI said they usually, but not always, had to use this technique. Still the fact that the WPI researchers cultured their cells in the Science paper was a clear sign - a red flag one think - that viral loads were pretty low.
        • WPI researchers Had to Search Multiple Times Both in Time and Space to Find the Virus - Not only did they look at a sample multiple times sometimes they had to look at samples taken at different times from the same patient in order to find the virus. The UK studies, on the other hand, presumably looked at the same samples once or twice. (The Retrovirology study looked at their samples twice, once using a more sensitive technique).
        • Does perhaps a bit different cohort, perhaps reduced rates of XMRV infection in the UK, maybe some blood storage issues and a much more difficult to find than expected virus equal zero findings in two UK studies? With true replication studies purportedly on the horizon we’ll know in the not too distant future.

        A Confident Group – The WPI asserted, as well, that the best test of XMRV infection, given the difficulty finding it using PCR, is an antibodies test. The Retrovirology group did use an antibodies test but the WPI asserted that it was flawed and theirs is superior.

        At the end they stated the only reliable to find XMRV in CFS is to use their approach and basically that no-one’s going to find it until they start using their techniques.


      Feb 16th


      • Dr. Vernon on the UK XRMV Study - as expected Dr. Vernon delivered a comprehensive overview of the latest XMRV study in the Retrovirology journal. Dr. Vernon spent some time making clear who just who did this study; it was basically the best of UK retroviral researchers (one 'world-renowned') plus top ME/CFS UK researchers with long histories of CFS research. 

        Like Dr. Shephard she clearly felt this paper presented a significant hurdle for XMRV. She reported that the PCR methods were identical to those used in the original paper.  When those techniques didn't find any virus they looked harder using a different, much more sensitive PCR technique. Dr. Vernon stated it could be 'considered better and more sensitive' than used in the original Science paper and they stil came up nothing.

        If I understood it right, Dr. Vernon also put one limb of the Science paper's argument in doubt by noting that the cross-reactivity in the antibody tests in this study suggested that the antibody tests in the Science paper could have been due to exposure to a different virus.

        Again: the Wrong Patients? - The sample came from three cohorts. Dr. Vernon noted that because the blood from the biggest cohort came from relatively 'new patients'  (1-4 years) it's possible that XMRV doesn't show up until later in the illness. This is not unheard of. My understanding is that HIV often hangs out in the spleen and other immune organs for several years before it wallops the blood cells and the low copy level of XMRV suggests that it could have another locus in the body. Dr. Vernon discounted this idea to some extent by noting that Dr. Kerr, a prominent ME/CFS researcher (who derives his funding from several ME/CFS support groups), helped conceive the study and presumably would have taken care to include more 'WPI-like' patients in the other cohorts. Still it's a possibility.

        Did a longer duration, sicker, perhaps more immune suppressed group have a more detectable infection? Not according to Dr. Mikovits; she recently reported that patients in the study simply needed to meet the Fukuda or Canadian Criteria for inclusion; they were not particularly ill or disabled.

        Still, Dr. Vernon took the WPI researchers to task for not releasing information regarding the illness duration, illness severity and treatment history of that original cohort, going so far as to suggest that their inability or unwillingness to do so could imperil the further research into the XMRV/CFS connection. She is clearly worried that more results like this one - which she warned will be forthcoming unless researchers know which patients to study - will dampen scientific interest in XMRV and CFS.

        Hiding out in the UK but not the US? - She also noted that the virus could be present in such low levels that even with their more sensitive techniques the Retrovirology researchers couldn't find it. That begs the question, though, why the WPI with their less sensitive methods was able to find it both before and after the Science paper in both US and UK patients.  (Dr. Mikovits noted that VIP Dx labs sometimes searched 3 or 4 times before they found the virus - did the WPI researchers do the same with their Science samples?)

        The virus is clearly hard to find, that's for sure; of the 27 people on the Phoenix Rising Forums VIPDx Poll only about 20% tested positive to the PCR test but 20% is still light years different from the zero percent the Retrovirology researchers reported; given their background they clearly would have loved to find 20% positive rates.

        Yes, perhaps there weren't enough long duration and severely ill patients in the Retrovirology study and the Imperial College study but it still seems hard to believe that the wrong patient cohort is the cause of "zero percent" positive rates. The cause of the conflicting study results is still very unclear.

        Dr. Vernon made it clear that the DHHS studies will use different techniques, including the WPI's original techniques, to examine people who tested positive for XMRV via the VIP Dx lab test. This will help determine why the discrepancies are showing up.

        Everyone's Doing Everything Right! - This has been a tough couple of days for XMRV but check out this take from a researcher in ScienceNow. It suggests that disparate results happen even in the best labs. 

        "discrepancies between labs are common, says David Griffiths, a virologist at Moredun Research Institute in Midlothian, United Kingdom, who has studied previous claims for retroviruses as the cause of chronic diseases. He also notes that he cannot find serious flaws with any of the published studies: "All the people involved are doing things exactly as they should be." For the time being, then, the XMRV results will remain frustratingly ambiguous. As Griffiths says, "There must be an explanation for why disparate results are showing up, but it may not be an easy thing to turn up."
      • For the Full Text of Dr Vernon's Analysis
      • The ME Association is one of three ME/CFS groups that has (CFIDS Association, MERUK) provided technical analyses of the XMRV studies. Their conclusions, written by Dr. Charles Shepard, indicate they now believe that with this new finding that the XMRV finding has a big hurdle to overcome. Specifically, they point out their inability to find 'any significant fault with the very thorough laboratory methods' in the study.

        They noted that there is still no international agreement regarding how to search for this virus and they appear to be as puzzled as the rest of us regarding the 'starkly' conflicting results. They state the need to find the 'exact reason why there is such a stark difference between the negative UK and the positive U.S. results.' They are also trying to test UK patients with XMRV positive results for the VIP Dx Labs to see how they fare using these different techniques.

        We have yet to see a US replication or validation study; it's unclear why a US study would have different results but thus far that strange pattern persists; every study that has looked for XMRV in the US has found it while every study that has looked for XRMV, whether in CFS patients or prostate cancer patients, has not. The ME Association's statement is below:

        ME Association's Statement on the Second UK XMRV Study - "These new negative results, along with the negative results from Imperial College, are in stark contrast to the very positive US results reported in Science and they clearly place a large question mark over a possible link between XMRV infection and ME/CFS. And while the two UK studies have been criticised for not being pure replication studies, because they are not using exactly the same criteria for patient selection, a significant proportion of these UK patients in both studies must have also met the Canadian clinical criteria. And while differing laboratory protocols were used to test for XMRV, it is very difficult to find any significant fault with the very thorough laboratory methods used in the new UK study. 


        Although some scientists will now conclude that the XMRV and ME/CFS debate is over, no firm conclusions can be drawn until we have the results from other studies that are being carried out, or have been completed, that are designed to try and find evidence of XMRV in people with ME/CFS. Further results from outside the UK should be appearing in the scientific journals in the coming weeks and months. Whilst the two UK studies do not provide any evidence for XMRV infection, they do not completely eliminate a role.span class="Apple-converted-space"> 

        One small but important add on piece of research that The MEA is continuing to pursue is to see if some of those people in the UK who have tested positive for XMRV using the US test can now be retested by one of the UK groups. It would also be very interesting to see if a mutually agreed cohort of CFS blood samples and control samples can be tested by all three UK and US research groups to see if they produce the same XMRV results.

        In the meantime, as the UK researchers point out, it is important to compare samples and protocols between different laboratories in different parts of the world because we do not currently have international agreement on which is the most effective way of testing for evidence of past and present XMRV infection. We also need to find out the exact reason/s why there is such a stark difference between the negative UK results and the positive US results

        The ME Association will continue to take a cautious, open-minded and questioning approach to XMRV. Our advice on XMRV testing remains the same. We do not believe there is any point, at present, in spending a large sum of money on commercial blood testing for XMRV because the presence of this infection has not yet been shown to be a diagnostic marker for ME/CFS or an aid to management. The accuracy of some of commercial testing also remains uncertain.

        The MEA Ramsay Research Fund - http://www.meassociation.org.uk/inde...=30&Itemid=205 - will continue to consider applications for research funding for any aspect of XMRV research."

        Dr. Vernon from the CFIDS Association is up next. She tends to give a much more technical analysis of the studies.
      • Speculation on the UK XMRV Study From a Layman  - This really is a conundrum. My understanding is that the WPI is now using Dr. Singh's XMRV specific antibody test which is showing  INCREASED not decreased rates of positivity. It appears that just as the WPI is getting more and more internal evidence that they're right these papers are coming out suggesting that something went wrong. The first question always appears to be whether what the WPI found is an endogenous retrovirus - a piece of junk DNA from an old mouse retrovirus in our genome. They sequenced 2 and a half strains of the virus and compared what they found against our entire genome against our entire genome and found nothing. That's one of the reasons Science took the paper - they convinced them it was not an endogenous retrovirus. 

        If it isn't an endogenous retrovirus then what is it? Bear in mind that we have yet to see a 'replication study'; no one has yet followed the WPI's study to the letter. Different groups are doing different kinds of PCR and different kinds of antibody tests. Theoretically they all should match up but they're not; the twists to this story are amazing and unsettling but the WPI has the National Cancer Institute and the Cleveland Clinic behind them; they produced 'the best' first paper possible and it landed in the most prestigous journal in the world. Other groups are doing more comprehensive analyses of the WPI results; Dr. Klimas said this was going to be an up and down process - she was clearly right!


      Feb 15th

      • Deja Vu in the UK - XMRV CFS Study Comes Up Negative Again! UK researchers are not winning the hearts and minds of CFS patients - that's for sure. Just a couple of uplifting weeks after Dr. Mikovits displayed so much enthusiasm and confidence in XMRV the other shoe has dropped. An Imperial College researcher said another negative study was coming and here it is; this UK study also failed to find virtually ANY evidence of XMRV in a large number of CFS patients. This study was similar and different from the Imperial College study.

        Annette Whittemore said to be cognizant of who's doing the studies - in this case, though, there doesn't appear to be any bias to question, no damning history of behavioral emphasis to reflect upon; two members of the study, Dr. Kerr and Dr. Gow, are long term ME/CFS researchers committed to a pathophysiological interpretation of this illness. (Ironically it was Dr. Gow that refuted Dr. DeFreitas finding 25 years ago).

        Indeed, the paper went to some lengths to praise the Lombardi Science paper stating the "apparently compelling evidence against the possibility of laboratory contamination" and the immune response against XMRV the researchers demonstrated was present. They stated that they set out with 'the intention of confirming the Lombardi' study.

        PCR Tests - This was a large study that looked at well over 500 CFS patients and controls from two cohorts in the UK and Scotland. They first looked for sequences on two the three genes XMRV possesses. When they didn't find anything the first time they looked again using a more sensitive assay.

        Immune Teststs - Unable to find evidence of XMRV by PCR they looked for signs that the patients immune systems were reacting to it. To do this they obtained some 'neutralizing antibodies' against the 'env' protein found in the family of mouse retroviruses. Antibodies neutralize retroviruses by attaching to them and preventing them from getting their hooks into cells. They also raise a red flag to the immune system to come and attack. As they examined this set of antibodies they were able to identify one that was specific for XMRV and they used it to search for the virus.

        The neutralization test is a rather indirect one; they apparently add the antibodies to the sample and then (somehow) test the sample for 'infectivity'. Since the antibodies attach themselves to the retroviruses the degree of infectivity should go down a certain amount and in a couple to test cases they confirmed this. When they ran the neutralizing antibody test on the 142 ME/CFS patients none of them met the criteria for infection. Ironically, 14% of the healthy controls from one of the healthy cohorts tested positive for infection, altho later testing suggested it was do to a different mouse virus.

        They stated that they were 'confident' that their 'PCR assay is more sensitive than the published single round PCR method and should have possessed the necessary sensitivity to find XMRV'.

        Two Different Tests : Two Different Results - The WPI has backed away from the PCR test because of its inability to detect XMRV at very low levels and their associated lab VIP Dx is not longer offering it. This could not be a reason, of course, for the zero results seen in this test - the WPI's PCR test may not be perfect but it appears to be able to find most instances of infection. We also know from Dr. Lombardi and from patient reports that the WPI's test IS finding XMRV infection in UK patients. Why they are finding it and two UK groups have not, is, of course, the big question. Either the patients are very different or the tests are. Since it seems unlikely that that the patients are THAT different its pretty clear that the WPI's test is quite different from these other groups.

        Validation Not a Replication Study y - It's interesting, by the way, that this UK group - with its ties to the WPI via Dr. Kerr - did not appear to avail itself of the WPI's assays or or Dr. Singh's antibody tests. Since the group didn't appear to use the WPI's methods this is a validation study not a replication study; its was an attempt to validate the WPI's claim that they'd found XMRV not an attempt to determine if the the WPI's methods worked.

        These are still just the first few of the XMRV studies we expect to come out but its remarkable turnaround given the lengths the WPI, researchers from the NCI, and the Cleveland Clinic went to in that compelling Science paper (Dr. Coffin called it as good a first paper as they get) to demonstrate the presence of XMRV. The fact they were able to show that this virus was able to infect previously uninfected cells and show a virus budding out of them still seems - at least to this layman - to be the most singular and important finding to date.

        The Scientific Director of the CFIDS Association, Dr. Vernon, will reportedly release an analysis of the study tomorrow, giving us a much needed expert overview of the situation.
      • The complete paper
      • ME Association's brief response
      • Professor Racaniello's Virology blog on the study
      • Discuss the results


      Feb 13th

      • Dr. Bell on the Move - Our most prolific XMRV lecturer is crossing the border to give a lecture in Toronta, Canada on March 6th. The talk is called “Current Findings and Research into ME/CFS: XMRV Virus and What It Means” The talk is courtesy of the Myalgic Encephalomyelitis Association of Ontario and the Environmental Health Clinic, Women's College Hospital: Saturday, March 6, 2010, 1-4 p.m. Women’s College Hospital Auditorium, 76 Grenville Street, Toronto Suggested Donation at the Door: $10
      • YouTube Video of DeMeirleir talking on ME/CFS, H2S, XMRV and more in Sweden (Nov. 2009) on YouTube. Part I / Part II (XMRV is in Part II.) Dr. De Meirleir was the main driver behind the work on the immune defect (RNase L) that lead Dr. Mikovits to search for XMRV in chronic fatigue syndrome patients. Dr. De Meirlier, however, switched his research interest to hydrogen sulfide about the time XMRV was found in RNase L deficient prostate cancer patients - just missing the boat on what may be the greatest find in ME/CFS history. It's very possible that without Dr. De Meirleir's work the XMRV/CFS connection might never been made.

        Dr. De Meirleir said he'd known of a retrovirus in chronic fatigue syndrome for several years and referred to Dr. DeFreitas work in the early 1990's (apparently with regard to another retrovirus). He believes that some virus mildly depresses the immune system but there are other factors. He believes its part of the puzzle but not the complete picture. He noted that it 'seems' to be a new virus (we don't know for sure) and referred to earlier epidemic occurrences of the disease that were caused by other pathogens.

        He was grateful for the increased rate of basic research XMRV will inspire but stated the patients will have to continue to be patient as it will take some time after that for the clinical ramifications (ie possible treatments) of XMRV to become clear. Dr. DeMeirleir made the point that he's getting good results with his immunomodulatory and other treatments - stating that for patients under 30 he is disappointed if he doesn't get 90% improvement (?!).

        (Dr. Mikovits is much more enthusiastic about quicker treatment possibilities for patients, stating in an e-mail that she envisioned many patients being in clinical trials just six months from now. She said she began getting calls from pharmaceutical companies the day after the Science article hit. These companies have many retroviral products sitting on their shelves that never made it to market with HIV. Some have gone through the steps needed to prove they're not dangerous; all is needed are trials demonstrating effectiveness. Dr. Mikovits has been shipping them cultures and special cell lines they can use to test their drugs against XMRV. Sign up on the WPI's webpage to participate in upcoming clinical trials.
      • The BEST Studies - After Dr. Mikovits talk we were able to add a couple more studies to the XMRV Study page and we've now got about 20 or so groups we think are trying to determine the incidence of XMRV in ME/CFS. But which ones are the best? Which will we learn the most from. My guess is that two sets of studies will make the most difference for us.

        The Big Cahounga's - First and foremost are the big studies from major labs that have alot of standing in the scientific world. These would be the DHHS studies involving the NHLBI (National Heart Lung and Blood Institute), the NCI ( National Cancer Institute) and the CDC. These studies will do more to convince or not convince the scientific community of the importance of studying XMRV. Given the excitement generated by XMRV its possible that interest in the pathogen could survive some negative studies by these groups but for the big federal money to show up one would think these studies need to work out.

        The ME/CFS Professionals - Let's jump ahead and say those studies all work out - what then? The big winners for us will be studies done by researchers such as Dr. Montoya, Dr. Kerr, Dr. Klimas, of course, Dr. Mikovits and Dr. Peterson and researchers of their ilk. Since these researchers already have so much information on chronic fatigue syndrome and to appear to have banked their samples all they need to is retest them and then add that data to the mix. Dr. Montoya should be able to quickly determine EBV positive patients are at increased risk for XMRV infection or if patients 'failing' repeat exercise tests are. Dr. Klimas will be able to zero on the role natural killer cell functioning plays in XMRV infection. With his now huge database of gene expression results, Dr. Kerr will be able to see if overactive or underactive genes are associated with XMRV.

        The BioBank Win - You can quickly see just how advantageous sample repository's such as the WPI repository or the patient BioBank the CFIDS Association of America is building as a part of its international research network. Once a new finding is found a BioBank can literally cut years off a research project.
      • MISSING IN ACTION - The NHLBI is working away on the blood, the National Cancer Institute has been all over XMRV for about a year, the Cleveland Clinic is engaged, the CDC started work the day after the Science paper came out, the Whittemore-Peterson Institute has been deluged with calls from pharmaceutical companies and researchers wanting to get a piece of the action but Dr. Mikovits informed us that one big player; in fact probably the MAJOR player in the field is MIA; nothing has been heard from the National Institute of Allergy and Infectious Diseases (NIAID).

        The NIAID - there's probably more retroviral experience in the NIAID than in any other organization in the world. The NIAID devoted so much money to, and became so invested in AIDS (some believe over-invested), that it came to be referred to as the 'National Institute of AIDS'.  The agency must simply be swarming with retrovirologists. It and the National Cancer Institute are the two biggest institutes at the NIH with budgets of about $5 billion a year.

        Our Former Home - The NIAID was also home to the CFS research program at the NIH until around 2000. Until they kicked us out (or we we kicked them out) the NIAID, in what now appear to be the 'glory' days of CFS research at the NIH, funded three small but busy CFS research centers. Even though NIAID inputs to CFS research over the past 10 years have faded badly the Institute has still easily pumped more money over time into CFS research than any other Institute....but now, according to Dr. Mikovits, its sitting on the fence - a sad, sad coda for an agency that one time was quite important to us and, which should be, if XMRV works out, very important to us in the future. Indeed, if XMRV is found to be a major contributing factor in this disease, it's hard to imagine the CFS program not ending up back at the NIAID at some point.


      Feb 8th

      • Dr. Cheney Talks with Dr. Mikovit Live - In TWO days - Check out a live and, surprise, surprise, FREE offering from Dr. Cheney as he presents Dr. Mikovits at the Cheney Clinic on Feb 10th at 1 pm EST (10 am PST) for one hour. Watch it here: It will also be available later on Dr. Cheney's Public Blog  
      • New XMRV Test by VIPDx - VIPDx - the only lab thus far certified by WPI to do XMRV testing - is now (almost) open for business. As we suspected the PCR test is out and a new culture test will be available on Feb 11th.  Prices have not been posted yet but are expected to be significantly lower. In her last lecture Dr. Mikovits stated that everyone who tested negative in the first round of tests will be retested using the new test using samples VIPDx put in storage.  A serology (antibody test) is expected by Spring.
      • Dr. Donnica Moore - new Whittemore-Peterson Institute Celebrity Spokesman - the articulate Dr. Donnica is now the Whittemore-Peterson Institutes official 'Celebrity' Spokesman. Besides her medical credentials she has a son with ME/CFS. She'll help out with awareness and fund raising. Check out the Press Release here.
      • Meanwhile Imperial College - the group that stated XMRV is not in UK CFS patients - announced on Feb 4th that they have developed their own commercial XMRV test providing UK patients with an apparently surefire way of testing negative for XMRV. 

        Demonstrating that CDC officials do not take the cake for shooting themselves in the foot in public, Imperial College later claimed the test was not for CFS patients but for prostate cancer patients and then, after shutting the link down, promised to explain on Monday - and then didn't.
      • Dr. Mikovits Comes Through - Dr. Mikovits stated that she answers e-mails and she apparently does - and in a very heartfelt fashion. This is from an email Mark at the Phoenix Rising Forums posted.

        "I read your email just after my talk in Santa Barbara and I cried. How to answer. I am so sorry that the tabloids made such a farce of a very real retrovirus infection present in patients throughout the world. We have detected XMRV in dozens of individuals with a ME diagnosis in the UK, Australia, Germany, Scotland...XMRV is NOT a MYTH it is a very real virus that we and others have detected. isolated and sequenced from cancer patients, CFS patients and children!!! Please go to our website www.wpinstitute.org or the Prohealth website to see the entire presentation which describes scientifically all of the differences in the studies and all that we did to show that XMRV is a NEW HUMAN RETROVIRUS of as yet unknown pathogenic potential but significantly associated with both prostate cancer and ME/CFS

        There are investigators n the UK who are taking XMRV very seriously and testing by our validated methods and working with us to find out the truth. NOt politics but truth. We will not stop at validation for you, Mark. We will find treatments to give you back whatever health possible. If you send me your contact information, I will make certain that you get tested and if XMRV positive, we will find treatments for you.

        6 months from now, I envision thousands of ME/CFS patients enrolled in clinical trials of XMRV therapeutics. The world-wide scientific community knows that XMRV is REAL and the best and brightest world wide are already dedicating their talents to XMRV research!!"

        Check out the rest of her email and a discussion on it here.


      Feb 7th

      • Dr. Bell XMRV Video's - check out these nice video's from Dr. Bell's latest talk on XMRV. This time the quality is excellent and Dr. Bell has a way of making difficult subjects understandable and he's just good to watch. Thanks to the Baborka Family for flying him out to California, putting on this lecture and recording it.

        http://vimeo.com/9143012

        http://vimeo.com/9254598

        http://vimeo.com/9261929    Q&A


      Feb 5th

      • The First Retrovirus in CFS: Pt II - I came across more information on the search for the first retrovirus in CFS and felt compelled to flesh out the story. It was a fascinating story indeed; full of ups and downs - periods of great excitement and great letdowns. (It certainly made a good book!). This story ends a little differently than does Osler's Web, however. Anyway to check out the big hunt for The First Retrovirus in ME/CFS click here.
      Feb 3rd

      • Check out an interesting blog on XMRV "All this has happened before"  that examines the British response to the Imperial College study.
      • The CFIDS Association of America reported the American Association of Blood Banking distributed a fact sheet today on XMRV. There's not alot new in this 3 page sheet; it does refer to CFS as myalgic encephalomyelitis at one point - which has gotta be a first for a federal agency. Somewhat humorously (or not) the AABB suggested not to worry about XMRV, if it is infectious through the blood, to get into the blood stream from CFS patients because most CFS patients are too disabled to give blood. Going way out on a limb they said it would be 'prudent' to refuse donations from people who have tested positive for XMRV but will still accept donations from everyone else.


      Feb 1st.

      • The Mikovits Prohealth Lecture Slides are now available on the Whittemore-Peterson Institute Site. The forty-one slides present indicated how much information Dr. Mikovits imparted at the lecture. With Dr. Mikovits sticking around and answering questions at length this lecture turned out to be a mammoth presentation indeed; it rang up at 25 written transcribed pages. See below for the transcripts A report from Phoenix Rising will be up 'shortly'.
      • Who is this woman?

         Dr. Elizabeth Under Acting Chief of CDC's CFS program
      • The CFIDS Association just posted the first photo of Dr. Elizabeth Unger; the acting head of the CDC's CFS Research program (as of Feb 14th). Rather aptly she's reviewing a gene expression microrray.


      Jan 31th


      Jan 30th

      • Dr. Reeves Out at the CDC! In a startling announcement at 3pm yesterday the CFIDS Association reported that Dr. Bill Reeves, the head of the CDC's CFS Research program for the past 10 years, was out (as of Feb. 14th) and Dr. Elizabeth Unger, a virologist and cancer specialist would be in charge as the agency looked for a new director.

        For more on this and to explore reasons why it may have happened (including an XMRV connection?) click here.
      • A Look Back at Dr. Reeves CFS Research Program - the pro's and con's; check it out here.
      • CFIDS Association Posts Info on the Acting CFS Research Chief, Dr. Elizabeth Unger and on the CDC organizational structure. The CAA reports that Dr. Unger has a solid, solid background in infectious diseases and cancer, is very well published and is currently the Team Leader of the Molecular Pathology program in the CDC. She will not be just the acting director of the CFS Research program she'll be acting director of the entire Chronic Viral Diseases Branch. 

        It appears that Dr. Reeves is not alone is his loss of a job; with a massive re-organization going on many positions are probably simply disappearing as different departments merge and new departments are created. It's unclear where and under who's direction the little CFS program will end up. Jeannie Spotila of the CFIDS Association stated it will probably be quite awhile before we know who will be running the CFS Research team.
      • Dr. Bell's hourlong January Lecture on XMRV in Tustin, California presented by the  Barborka Family is up. Dr. Bell just has a gift of explaining difficult topics in a down to earth way. Here he presents his very frank and objective opinion on XMRV to date; its the most exciting thing he's seen in the disease to date and he's waiting to see how it turns out.  I loved how he elucidated how the non-XMRV PCR positive patients in the Science study turned out to be positive (in other ways for the disease). Lots and lots of good stuff in here.

       

      Jan 25th

      • Dr. Mikovits Speaks - Dr. Mikovits spoke and at length at Prohealth's sponsored talk in Santa Barbara on January 22. Unfortunately the transmission was interrupted early in the talk; it resumed later but I only caught the tail end of it. It was clear, though, that after what appeared to be a couple of down weeks for the WPI's discovery, that Dr. Mikovits enthusiasm was undimmed. One thing we did learn concerned the extraordinary government response to the discovery; Dr. Mikovits stated that the National Cancer Institute has already spent $1 million on it. That's in 3 months....

        Compare that to the $500,000 the CDC (begrudgingly) spent on the first retroviral discovery in this illness over about a year and a half span about 17 years ago. What can we attribute to this huge increase in interest and funding for the second major retroviral discovery in ME/CFS? It's not government interest in this disease; the NIH appears to be spending about as much on chronic fatigue syndrome now as it did in 1992 during the first retroviral discovery - a shocking fact given how much we now know about the diseases prevalence and costs. This suggests that the federal bureaucrats that funnel out the money at the CDC and NIH is actually worse than it was then and that government intransigence on the research level is as fixed as ever.

        So how to account for all the "CFS-Love" pouring out of the government? Basically we can thank the Whittemore Peterson team for producing a paper that simply could not be ignored. We can thank Dr. Mikovits for taking an interest in the subject and putting her connections at the National Cancer Institute to work and we can thank the Whittemore's for bankrolling what we now know is a very expensive arena in medical research. We can also thank our lucky stars that the WPI found this bug in the blood of 4% of healthy controls; the idea that, post-AIDS, there was an infectious agent floating around in our blood supply was simply too ominous to ignore - even if it came from a paper on chronic fatigue syndrome. For once, ME/CFS patients simply got lucky.

        Partial Transcription - Dr. Mikovits talk should be up in a couple days. Until then we have a nice transciption of the first part of her talk by 'TheFreePrisoner" on her blog on the Phoenix Rising Forums (love that tagname!) One thing I liked about her talk was the fact that she really started to walk us through the technical aspects of the study and that's in evidence here.

      Jan 19th
      • Dr. Mikovits Prohealth Lecture is tomorrow! Prohealth will be streaming live Dr. Mikovits at 2PM PST - that's PST not EST.  This is obviously the talk not to miss. Dr. Mikovits is generally a very enthusiastic speaker; it'll be fascinating to hear what she says after the events of the past couple weeks.
      • Dr. Bell recently talked in California about XMRV. He will reportedly be releasing his own version of the talk but until then Chronic Fatigue Treatments has a blog on it. Its clear that right now we're getting a lot of repackaging of some of the same information. Dr. Bell also recommended that patients not get tested yet. He did note that the cytokine profiles of CFS patients do support the possibility of a retroviral infection but he may have been talking about the Science group since cytokine studies have tended to have rather variable results in ME/CFS. Dr. Klimas 's recently released a study in which one cytokine finding was similar to what was seen in the Science group and another was the direct opposite. This is a heterogeneous group of people.

        He also characterized the natural killer cell problems in ME/CFS as being a 'subtle immunodeficiency". NK cell problems are one of the few immune abnormalities that have had really consistent results across studies. Are they important or not? Dr. Peterson appears to believe that they are; according to this report Dr. Bell doesn't seem to believe that they are that significant. (Can anything subtle play a significant role in ME/CFS?)

        Dr. Bell also talked about low blood volume - a subject he's been concerned with for many years. He said about 80% of CFS patients have low blood volume but there are no good treatments for it. He believes it may be due to sympathetic nervous system problems.
      • Meanwhile Dr. Klimas is Back on the New York Times - answering questions - not on XMRV - but some very interesting questions indeed and some fuller answers than we've had in the past. She draws some interesting parallels and notes differences between her AIDS and ME/CFS patients. Might AIDS patients be harboring XMRV? Yes, but its probably being knocked down by the retrovirals they're taking. She seems to be a bit less enthusiastic about XMRV right now stating "If — and this is a big if — XMRV turns out to be a big player in C.F.S." but she said little about it so I may be reading something into that.


        • Jan 19th

      • Dr. Bateman on XMRV and CFS Research on YouTube. If, like me, you for some reason couldn't access the webinar we can thank LuminescentFeeling (from, where else? - the Phoenix Rising Forums) for posting on YouTube. This is particularly gratifying since a technical glitch prevented it from being archived. Check it out here.


      Jan 17th

      • With VIP Dx Labs still undergoing updates (three days later) we're still waiting to hear just what's up with the XMRV testing. Is PCR out? Are culture tests 'in'? We'll have to wait further.
      • The First Retrovirus - meanwhile after a fascinating read of Osler's Web I just felt compelled to write something on Elaine DeFreitas hunt for the first retrovirus in chronic fatigue syndrome that ended so badly for her, and really everyone else. My second read of the book really highlighted for me what a complex thing the hunt for a retrovirus can be. The article is too long to post here but you find it on the new ME/CFS Front Page Section of the Forums.
      • The Polls - we've had a few more people respond to the polls. The percent of people testing positive to PCR or culture tests is 50% (n=24). Its still early but thus far how ill you are doesn't seem to play a role in who tests positive. Could the low percentage of positive results for the PCR test be one factor that is causing VIP Dx to pull back on the PCR tests (if they are?) We're at just 26% positive. No one yet has tested positive to the Cooperative Diagnostic PCR poll that looks at different sections of the virus.
      • Don't Forget: the CFIDS Association of America's XMRV webinar with Dr. Bateman starts at 9 AM PST and 12 noon EST. You have to register to watch. Then in 4 days we have Dr. Mikovits on Prohealth.


      Jan 14


      • WPI updates XMRV Test/Backs Off PCR Test/Defines Relationship between WPI and VIPdx - The WPI is continuing to refine their testing and now has an improved, less costly and more accurate test. This makes sense with what we've heard about testing; some patients tests are sailing right through while others are taking months to get their results. These long waits may be occurring for those getting borderline results thus requiring VIPDx to test them multiple times. Indeed, Dr. Lombardi statement that they considered that one positive hit in multiple tests suggests that some samples are getting multiple tests. This announcement suggests that that may not be as much of a problem anymore. 

        Or does it? Its not easy to figure out what's going. Apparently they're using the same culture test. Does this mean the PCR is out? It may. Unfortunately the VIPDx site is down. 
      • Culture In/PCR Out? - The WPI now says that the culture test is "the only scientifically validated methodology to find XMRV".  They state that "At this time no single PCR or whole blood assay alone has been validated as accurately detecting XMRV, and is therefore not an appropriate way to study or diagnose the presence of the virus." This means that your PCR tests, while certainly not meaningless, are not quite diagnostic yet but that the culture tests are - quite a change.
      • This is interesting development to be sure; as has been discussed in this page, XMRV is a new bug whose genetic variation from place to place is unknown; until more is known regarding how XMRV differs from location to location its going to be impossible to create a 'validated' test for it. The DHHS in cooperation with several labs is reportedly doing the work.

        Whittemore Peterson Institute and VIPDx Labs - Rumors have been floating around what WPI's relationship to VIP Dx; are they partners? Does WPI own the lab? WPI cleared up some of these questions by stating WPI gets a royalty from VIPDx for each test and that the Whittemore's have 'an interest' in VIPDx that accrues to a trust to benefit WPI. Furthermore, all profits from VIPDx XMRV testing will return to WPI. Their original press release stated that the WPI started 'supporting' VIP Dx after 9/11 interrupted blood sample shipments to Europe, presumably to the ReddLabs which featured RNase L testing. WPI is in discussions with other laboratories inside and outside the US regarding licensing the XMRV test.


      Jan 13


      • Dr. Mikovits Take the Gloves Off - In an article in RJG.com, an online Reno publication, Dr. Mikovits stated that "You can't claim to replicate a study if you don't do a single thing that we did in our study," which was true since Imperial College's attempt was a validation study and not a replication study. Dr. Mikovits went a considerable step further, however, when she claimed that they actually tried NOT to find XMRV by skewing their experimental design. Just getting started she slammed them for paying to get the study published and suggesting that the insurance companies were behind the study.

        Strong words indeed and not often heard from researchers. Unfortunately RJG.com didn't print the details of how Dr. Mikovits felt the study was skewed (patient cohort?, water sample?). The WPI took them to task for not replicating the orginal study but its clear that they feel the group didn't do the validation part correctly either; ie if XMRV was there they don't believe they would have found it.

        It's unfortunate indeed that the first 'replication' attempt was from such a suspect source. While Dr. Mikovits pointed out how anxious the Imperial College finding had made patients, aside from that, this brouhaha will notmake any difference as the studies from different groups and with different patients come flooding in. Finding out what's up with this newly discovered bug will take time and study.

        Annette Whittemore calmed things down a bit when she stated that We think XMRV is, at the very least, a biomarker for a subset of patients with Chronic Fatigue Syndrome." which is a good safe statement to make. 'XMRV', whether or not it causes ME/CFS, would make a great biomarker because it appears to be rarely found elsewhere but is found in at least a significant percentage of CFS patients. Researchers have been looking for a biomarker like that for over 25 years and have turned up nothing.
      • Imperial College Responds - Meanwhile Dr. Cleare responded to questions about the patient cohort in the Imperial College Study. He asserted that the patients in the study were much like patients everywhere; they all met the standard (Fukuda) definition, most experienced physical and mental fatigue, most experience post-exertional malaise. They exclude most psychiatric disorders including somatisaton -which they say is rare anyway. Nor did they try to 'shape' or 'select' the patients appearing in the Imperial College study. Nor is this group more 'psychiatric' than other groups and, in fact, they resent the implication that they are.

        As a laymen, it seems highly, highly unlikely to me that a different cohort could account for the results of the Imperial College study.

      Jan 12th


      • Dr. Bateman in CFIDS Association Webinar - This is the internet in action! Sign for this webinar put on by the CFIDS Association and you can watch Dr. Bateman speak on the XMRV with Dr. Suzanne Vernon moderating from the comfort of your computer. Congratulations to both the CFIDS Association and Prohealth for creating two live web events. First comes Dr. Bateman on the 18th and Dr. Mikovits (via Prohealth) on the 22nd. Register for the CAA's presentation here. and Prohealths Presentation here.
      • Gordon Medical Associates is a medical group that's been working with the Whittemore Peterson Institute on XMRV. They just sent us a little update which again suggests that the testing side has hit a few bumps. Dr. Lombardi recently stated that the viral copies of the virus were very low and that the testing process was quite slow. Gordon Associates first called for a bit more patience and then stated that XMRV is being a bit 'difficult'.

        "First, those GMA patients who were tested in either one of two studies need to stay patient a little longer. We have provided over 130 samples to Dr. Judy Mikovits for extended testing for XMRV. Dr. Mikovits tells us most of those samples have been tested, and that we will receive the results as soon as they are finished analyzing the data. Those who provided samples to Panorama labs will also need to wait. XMRV is proving to be a difficult virus to find in testing, and both labs are working to do their best to provide accurate information."





      Jan 11th

      • Dr. Bell Speaking in Santa Ana, Ca on XMRV January 15th
      • Cooperative Diagnostics Results Top VIPDx Results - Neither poll is anything to cheer about regarding participation but it's remarkable that we now have more results from the CD PCR poll (13) than the VIP Dx PCR poll (11). (The combines VIP DX PCR/Culture Poll is still tops with 16 results). Given that the WPI and Dr. Coffin both thrashed the Cooperative test when it first came it this can only suggest that VIP Dx Labs is moving very, very slowly.

        Meanwhile no one has tested positive for Cooperatives two gene sequence PCR test and only 18% are testing positive for VIP Dx's one gene sequence PCR test. (66% of patients in the Science paper tested positive.) Fifty percent of patients are testing positive, however, for either a PCR or the culture test which is a bit higher than the 36% rate reported by Glean in his article. 
      • My Cooperative Diagnostics Test - I received my test result back from Cooperative Diagnostics. I was, like everyone else who has taken the poll thus far, tested negative. I was able to get the test done because I was part of an XMRV study CD is doing. 

        Given the results of the Imperial College tests the results are illuminating because both groups appear to be using a similar strategy; ignoring the sequences the WPI tested for and instead focusing on sequences they know (or believe they know) are there. This is certainly a legitimate way to test for 'XMRV' as we know it. Whether its a good test for what the WPI found is another question. 

        This is what they said. 

        The two strains of XMRV found by Lombardi et al in chronic fatigue syndrome that were sequenced had roughly 6 bases that were different from prostate cancer XMRV. We used these strains in addition to prostate cancer strains and several strains of murine leukemia viruses (MLV) in the design of our test. In contrast to published tests for XMRV that have been designed in highly variable DNA regions in the MLV family ... we chose to design our initial test to use the pol gene so it could detect all MLV species, including XMRV. This means we tested a DNA sequence that has not changed in hundreds or even thousands of years on an evolutionary scale in the MLV family. This test would be more apt to detect XMRV than any other test used. Therefore, we would likely have more positives than previously reported in PCR tets for CFS when XMRV is actually present.

        We also used a superior test sensitivity, enabling the detection of 10 to 25 times few viruses in a blood sample than previously reported tests for XMRV. This was proven when we were able to detect XMRV in 1 infected 22Rv1 cell from a commercially available prostate cancer cell line in a background of 2.5 ug of extracted DNA from blood. We also designed a second test with the same performance characteristics of the first. This allowed us to also evaluate the env genes, creating an extra confirmation step in our testing.
        A Laymen's Assessment of the XMRV Situation (Laymen in Charge - Be Very Wary)
      • REPLICATION VS VALIDATION STUDIES - the Imperial College and CD tests are validation 'studies' not replication studies and there's a big difference between them. Replication studies follow the first studies techniques to the letter.They're using the same processes to find the same genetic sequences that the original study found. 

        Validation studies, on the other hand, simply try to validate the first studies assertion - in this case the WPI's assertion that they found XMRV. They're not trying to replicate the original techniques; in fact, it's better if they don't. Virus hunters can use any number of techniques to find a virus; if a virus is there any of these techniques should be able to find it. Thus, they're often using different kinds of PCR tests and are often looking for different genetic sequences than in the original study. When Imperial College or CD attempts to detect the virus using a different means than the WPI does, its trying to validate their assertion that they've found XMRV - not find the same genetic sequences WPI did. 

        The WPI's Variable Genetic Sequences - It's intriguing that CD states that the tests thus far developed for XMRV focused on 'highly variable' regions of the DNA (we heard this from another researcher). The WPI tested 'gag' sequences which, as I remember, are from the coat of the virus. Since this part of the virus is constantly interacting with the environment it's not surprising that it might be variable. 

        Cooperative Diagnostics states, though, that ALL XMRV tests, not just the WPI test, have focused on variable regions of the genome. The upside to that approach appears to be that these tests can differentiate between different types of murine retroviruses; ie they can pick out XMRV from other murine retroviruses. The downside is that because they are variable they could conceivably differ from strain to strain and patient to patient - thus some patients could test negative when they're actually positive.

        Cooperative Diagnostics Conservative Search for XMRV - Cooperative Diagnostics is taking a very conservative approach by focusing on highly stable regions which are shared with other retroviruses. These were gene sequences in the pol gene that are believed to have been stable for 'hundreds or even thousands' of years. Since several viruses share these regions they expected higher levels of false positives ; ie if anyone carried those viruses they would show as testing positive for 'XMRV'.

        Highly Sensitive - They also developed the most highly sensitive test yet. They demonstrated the test was able to identify even very low levels of the XMRV virus found in standard preparations of prostate cancer cells. 

        Two Genetic Sequences - They also looked at at the env gene sequence found in the XMRV. This is the sequence that the Cleveland Clinic - in small number of samples - demonstrated was in the WPI samples - and helped convince them the WPI had found XMRV. Because Cooperative Diagnostics is looking two stable sequences they appear to be providing the most comprehensive test for XMRV commercially available.

        At least in my sample and the 12 other people who voted in the poll none of us tested positive for these sequences; ie we did not have XMRV. 

        NOT XMRV? - eaving aside different patient cohorts, geographical locations, and other confounding factors the Imperial College and CD findings thus far refute the WPI's claims that they found XMRV. Instead they suggest either that the WPI found a different type of XMRV or some gene sequences that are similar to those found in XMRV but not the actual bug itself. 

        The Weak Link? - it could be that XMRV is more variable than researchers know; that they're looking for gene sequences that are slightly different than the standard XMRV sequence. That standard XMRV sample, after all, must have come from prostate cancer studies from a small probably localized set of patients and may not reflect what XMRV looks like in the rest of the population. The problem with this argument is that Cooperative Diagnostics tried to account for this by looking for a genetic sequence that they don't believe changes between several viruses alone within a virus - and didn't find it. 

        Contamination? - Its also possible that the WPI is picking up an endogenous retrovirus that has some similar genetic sequences to XMRV. This is the 'contamination' theory which no one really seems to take seriously. For one thing the WPI fully sequenced two samples of XMRV and parts of third and they had very close genetic similarity to XMRV


        • The BATTLE
      • Evidence For the WPI's Assertion: they identified a 'gag' sequence that appeared to come from XMRV. The Cleveland clinic confirmed that seven of 11 patients also had an 'env' sequence. Importantly, the WPI sequenced 2 1/2 strains of the bug from their patients and it turned out to be XMRV. The weak point here was that the 'gag' sequence is variable in XMRV but they have that full sequencing of strains to back them up - strong evidence in their favor. Plus while it's not evidence for XMRV the WPI did find something that was able, to jump from an infected cell to an uninfected cell in a culture test; this doesn't appear to be a fragment of something - it appears to be 'something'. 

        Evidence Against the WPI's Assertion: One study and the poll results from another labs test that looked for very stable genetic sequences in XMRV have not found them; ie no XMRV. Since they haven't found any XMRV it's clear that patient cohorts are not the complete answer. 

        A Conundrum - There doesn't appear to be any good answer - we're at a conundrum. Short of someone having made a technical error its hard for this layman to understand these conflicting results. Perhaps the best way to leave it is that XMRV is a newly discovered retrovirus and much remains to be learned about it.
      Jan 10th

      •  Jan 9th

      • VIPDx - An enterprising member of the Phoenix Rising Forums asked VIPDx some questions about their tests and they answered right back. When asked about that rather low 36% positive rate VIPDx replied

        When Whittemore Peterson did their research it was on a small group of patients who have a “confirmed diagnosis” of CFS.

        VIP Dx is testing hundreds of patients whose medical history is unknown and a diagnosis of CFS may or may not be confirmed.

        Although we strive to offer the most sensitive test available XMRV is typically present at a very low-copy number and may be below the limit of detection from time to time.

        Retroviruses (like XMRV) are integrated into cellular DNA and are considered life-long infections; it is possible that the immune system may decrease the virus to a level below the limit of detection from time to time (non-symptomatic). Presently, the life cycle of the virus is unknown; if you receive a positive result at any point, we do not recommend re-testing.

        XMRV testing at VIP Dx uses the same methods as published in the Lombardi, et al, October 2009 issue of Science. This test included PCR testing on lymphocytes as well as virus culture. This method requires 20mL of whole blood and although it is much more time consuming and labor intensive than other methods, we find that it dramatically reduces the rate of false negative results. It is also why the cost of this test is greater than that of tour standard PCR tests.&



        Thus there are potentially two reasons for the lower than expected (but still significant) rate of positive results (a) different patients (b) the virus could actually be there but in numbers so low that its difficult to find at any one time. One  member of the forums sent his blood in in Nov and still has not gotten a result. On the other hand a few people who have sent their tests in got their results back fairly quickly. It sounds like there are some borderline results that VIP Dx is being careful with; which is good to hear but also suggests they haven't nailed the test down completely yet. (?)

       Jan 8th

      • Biff! Bam! Boom! - the Economist weighs in with characteristically fun to read article that actually brings up some potential problems with the study.
      • Dr. Donnica is back! Check out our best spokeswoman for this disease on a video she did for the Doctor's Channel where Doctor's talk to Doctor's. This is short general introduction to CFS (no XMRV) but it's nice to see. She gets MCS in there.
      • Dr. Enlander Talks! - Dr. Enlander also did a very short video for the Dr's channel.  Its great to see ME/CFS specialists talking to Doctors about this disease (instead of CDC personnel). Dr. Enlander gets myalgic encephalomyelitis in his short talk. No XMRV here either but you've got to think the interest in XMRV is sparking more interest in this disease in general. Dr. Enlander will have a talk on XMRV coming out.

      Jan 7th

      • Imperial Study Fallout: Day Three - there's nothing like a failed replication replication attempt to get the information flowing. Sam Kean of ScienceNow reported that after questioning why the Imperial Lab didn't look at the same genetic sequence, Dr. Lombardi stated that after 300 tests (only 300 in a month plus?)VIPDx is getting a 36% positive rate - about half found in this study and far fewer than the 95% reported after the study. Meanwhile VIPDx Labs is getting some heat for offering a $650 test that (a) has not been standardized and (b)for a bug whose effects are clearly unknown.

        Dr. Coffin, one of the top retrovirologists in the nation, suggested that both groups could be correct and this seems to make the most sense at this point. Some research groups are choosing not to use the genetic sequences in the WPI test because, at least according to one source, they come from a more variable region of the genome. Instead they're looking for genetic sequences that they know are stable in the virus. XMRV is, however, a new virus which has not been well studied. Although XMRV's genetic variation in the US appears, at least at this point, to be quite low its possible that the genetic sequences outside the US are different. If this is so then a probe using those sequences wouldn't pick up any evidence of the virus.

      Jan 6th

      And if you see some negative papers coming out, don’t be discouraged. It’s going to happen. There are going to be some negative papers. People really jump to do this. And the method is not that easy and getting the right bits and pieces you need together  (is not easy)" Dr. Nancy Klimas



      •  Whittemore-Peterson-Institute Responds - The WPI iweighed in the next day and in very blunt language took the Imperial College study to task calling it 'meaningless'.  Besides the different patient cohorts and different blood sampling procedures they cited

        • the use of a water control rather than a blood control
        • different primer sequences and amplification protocol which was not validated by a clinical control
        • fewer rigorous tests of accuracy
         If I understand them correctly they're also assert that the group should have used an positive sample from a patient rather than a standard XMRV sample as a control. Plus they did more tests involving three different labs to ensure accuracy than the Imperial College group.  Plus they had questions regarding the different protocols.

        Its getting pretty muddy here. One thing we're going to see are studies replicating their results against standardized XMRV samples (eg Imperial College) or against positive samples from the WPI. Theoretically, if both samples contain XMRV they should produce similar results but if the 'XMRV' in them is slightly different it could create problems. 

        There are differences of opinion regarding how exact a lab needs to be in replicating another labs results. There are several different PCR techniques and variations within each kind of technique. Some researchers assert that any valid technique should yield positive results. Others believe slight differences can make big differences. At this step of the game - with such a new finding - it seems pretty clear that the first priority is exactly duplicating the original study's findings.
      • The Brits Smack XMRV or Do They? - Attempting to stop the bleeding in the media which appears not to be paying attention to any of the possible problems in the UK study the CFIDS Association of America produced a press release that stated in no uncertain terms their concerns about "many elements" of the study including the rush to publication (three days between submission and acceptance), the different processes used in the two studies and the differing patient groups.

        Dr. Suzanne Vernon, the CFID's Associations Scientific Director produced the critique of the study and the CAA touted her credentials in Press Release; a directorate in Virology and 17 years years of public health research on infectious diseases.

        Dr. Vernon closed the press release alluding to a need for a 'standardized test' before millions of dollars of funding are potentially wasted. Developing a standardized test requires having multiple labs test and retest different procedures until they all agree they have found the correct test. Only then will it be possible to determine the true prevalence of XMRV.

        Gird Your Loins ME/CFS Patients - in the meantime Dr. McClure's comments suggest we may be about see a stream of similar findings. A participant in the Phoenix Rising forums reports a CDC report will be out next week. Now is the time to member both Dr. Klimas and Dr. Vernon's admonitions to sit tight and not take any one (or two) results too seriously at this point.

        Meanwhile the WPI remains silent but are reportedly working on their response. 
      • The Differences in This Study - How did this study differ from the Science study?

        Its Location - the disconnect between researchers ability to find XMRV in the US and Europe is growing; both attempts to replicate XMRV findings outside of the US have failed; both a large German study prostate cancer and this large UK study found zero evidence of XMRV. Is this due to differences in XMRV prevalence or to differing laboratory procedures? Patients report that Dr. Mikovits stated there may be significant geographical differences in prevalence in the US;- some regions reportedly had much rates of infected CFS patients than others in their testing. XMRV has, reportedly, been found in Europe, however, and its hard to imagine that the geographic differences could be that distinct. Laymen's assessment  - if its a problem its not THE problem.

        Different Gene Sequences - The Imperial College Group did not search for the same sequences as did the WPI. They may be following a somewhat similar technique to the Cooperative Diagnostics Lab. Cooperative Diagnostics reported that the WPI looked at genetic sequences that contain high variability. Because of this they searched for genetic sequences that have been stable for long periods of time. It's possible the Imperial College group used the same rationale. Laymen's assessment - possibly a key issue

        Blinded Study - the Imperial College Study was 'blinded', albeit in a strange way. Although the PCR technician didn't know which samples he/she was assessing all the samples came from CFS patients or 'water controls'. Although the WPI study contained healthy controls it was, apparently, not blinded. Laymen's assessment - not a huge issue; differing percentages of positive patients could be attributed to operator error - but not to such huge differences.

        Different Procedures - Dr. Vernon has noted that several techniques were different in the two studies. Some researchers will argue that techniques don't have to be replicated exactly for a robust finding to show up. Others argue they do need to be replicated exactly. Inexact replication of the first retroviral finding was a major controversy of the first retroviral finding in ME/CFS and experts differed on whether it mattered or not. Laymen's assessment - potentially a major issue.

        Different Patient Groups - the Imperial College group used quite ill patients who met the CDC criteria judged (by the investigators)to be 'typical' of chronic fatigue syndrome patients in Australia and the US. Its possible that the WPI group (immunologically challenged with metabolic dysfunction) were a different subset. However, in a large group of CFS patients (168), surely a good portion would fit the WPI profile, and no patients at all tested positive. Laymen's assessment - if its an its not THE issue.

        Laymen's Overall Assessment         - This is a methodological problem rooted in the complexities of PCR analysis.  (Any PCR experts outs there?)

      Jan 5th

      • First XMRV Replication Study Published - and its a doozy. Originating from the Imperial College and with patients supplied by Simon Wessely, the study found zero (that's zero!) evidence of XMRV in 186 CFS patients. Here's a link to an article by the BBC and a link to the original paper

        The basics of the study were that they looked at a lot of patients (186) who were quite ill (only 19% working), had high rates of disability, about 50% of which had infectious onset. They all met the standard CFS Criteria (1994 Fukuda) and they did not have a major psychiatric condition. (I'm unclear if depression is excluded or not). The researchers did not test healthy controls.  They had a positive sample of XMRV to ensure that they could find the virus.

        Remarkably, they didn't find the virus in any of the samples - a similar finding to an earlier German study that failed to find XMRV in any prostate cancer samples. These studies underline how complex situation these efforts are. Earlier the CFIDS Association noted that the German study did not adequately replicate the original XMRV prostate cancer study. Now Dr. Vernon of the CFIDS Association asserts the same is true with this Imperial College study.

        In a CFIDS Link report Dr. Vernon stated that this study 'should not be considered a valid attempt to replicate the findings" of the Science Study. Basically she listed a series of methodological questions that could have interferred with the Imperial College Researchers ability to find the virus. Most of these will fly right over most of our heads but they include:

        • collecting the virus in different kinds of collection tubes
        • the DNA from the patients was extracted and purified in a different manner
        • they used different amounts of DNA to amplify their assays
        • they looked at different parts of the genome
        • tthey ran the PCR under different conditions

        Based on Dr. Vernon's experience  working with PCR any of these could have affected the results. She didn't say that they did but that they could have. She then pointed to a larger much more rigorous study that the Department of Health and Human Services is engaged in. (Both Dr. Vernon and Dr. Mikovits are part of a team overseeing that study). Since that study will involve multiple laboratories coming up with a standardized test first that study will take longer to finish. She did say that the CFIDS Association is urging that the DHHS study is completed as expeditiously as possible. She, also, like Dr. Klimas urged patients to be prepared for conflicting results'

        "The U.S. Department of Health and Human Services Blood XMRV Scientific Research Working Group is conducting a rigorous study to detect XMRV. Multiple laboratories will standardize methods to optimize sensitive detection of XMRV proviral DNA and viral RNA and then, once methods are standardized, these same laboratories will test coded panels of blood samples obtained from healthy blood donors and CFS patients. We look forward to the results of this study and urge that it be completed expeditiously, especially in light of this report from the U.K. In the meantime, be prepared to read about more studies with conflicting findings. Rather than simply accept or dismiss new information, we will help make sense of why discrepant results occur."

        It sounds like this study will most likely be the gold standard for XMRV study. It may, is more than any other study, be the one that validates does not validate the Whittemore Peterson Institute's findings.



       Jan 4th

       

      • Dr. Mikovits will be giving a 2 hour presentation on XMRV in Santa Barbara on Jan 22nd. Tickets are still available. Prohealth will also be streaming live the presentation but definitely get there if you can. My experience with Dr. Mikovits is that she's very approachable and she's happy to answer questions before or after a presentation.

      Dec 30th

      • A short article on XMRV had Annette Whittemore stating, rather positively, that “We’re very hopeful that within the year, we will begin to see clinical drug trials for XMRV-related diseases such as Chronic Fatigue Syndrome, fibromyalgia and many other unknown diseases" 

        Nothing the WPI has seen in their labs over the last couple of months since the Science article came out  has compelled them to pull back on their expectations at all. Particularly intriguing is Annette's statements about 'many other unknown' diseases. Does she mean poorly understood diseases like MCS or IBS? Or is she referring to neurological disorders that simply haven't been described adequately yet? Diagnosing brain disorders can be very sketchy; patients often don't fit into the standard 'autism' or 'multiple sclerosis' profile - there's alot of drift in there. Is Annette talking about a new group of XAND (XMRV Associated Neurological Disorders?).

        The WPI is clearly engaged with many groups spread across the US and Europe with Annette stating “We are continuing to work with the National Cancer Institute and many other individual researchers,” Whittemore said. “We also are doing confirmation studies of additional Chronic Fatigue Syndrome patients with other countries, including Sweden, Norway and the United Kingdom, as well as many scientists across the United States.”
      • Cooperative Diagnostics Lab and VIPDx Polls Show Divergence - We still have an almost inexplicably low number of people participating in the XMRV Testing Polls but even so we have a divergence in the results for the PCR tests. Thus far 30% of 10 people have tested positive for the PCF test from the VIPDx lab but nobody yet has tested positive (8 results) to the Cooperative Diagnostics poll. As Nancy Klimas pointed out we should expect divergent test results until a standard test has been developed.
      • XMRV Media Thread on Phoenix Rising - We've had quite a lull in XMRV news so perhaps its a good time to check out of my favorite features in the XMRV section of the Phoenix Rising Forums. Summer created a media section that contains short excerpts and/or links to media articles on XMRV. Thus far over 80 posts have been made.

        In this one From Women's Day Dr. Mikovits states people might want to put off being tested for now since there are no good treatments for some XMRV yet. She also says that treatment trials at the Whittemore Peterson Institute could start as early next year.

        There's also this YouTube video from Imogen Heap on XMRV . There's lots of stuff on the Media Page. If you want to look back at what's happened or if you want to see you might've missed check out the mighty there might Media Thread Summer put together.
      • Faces of XMRV - IslandFinn also started an XMRV images thread that has some fascinating images.

       Dec 24th
       

      • Dr. Bell's Latest On XMRV - One section from Dr. Bell's December Lyndonville Newsletter is worth quoting in full because it is so timely. XMRV studies will at some point start pouring out.  Both Dr. Klimas and Dr. Bell have stated that the important thing, particularly in the early stages, is not to over-react to negative or even positive reports. As Dr. Bell explains the process is more complex than we know and that it will take some time before we know what's  really what.

         "...Not surprisingly, the first stage of the attempt to replicate these results has resulted in various international groups almost entering a race to see who could replicate or refute the WPI results first. And this has meant they have gone for an easy and immediate source of patient material - stored blood samples. I am not aware of any stored blood samples here in the UK that are from patients who meet Fukuda plus Canadian criteria and I doubt if there are any."

        This brings up really important issues in interpreting the results of studies that will come out over the next six months. In my practice over the years, I have seen the whole range of patients from kind-of tired to bedridden orthostatic intolerance. Despite what the different criteria attempt to prevent, much of the diagnosis is based upon using the "force". There are some clinicians who diagnose CFS and I have absolutely no idea of what their patients are like. Through years of observation, I do have a concept of what Dan Peterson's patients are like.

        So is XMRV in really severe ME? CFS? Orthostatic intolerance? CFS plus POTS? Mild fibromalgia? Atypical MS? CFS with or without depression? Chronic Lyme disease? Multiple chemical sensitivities? And what about stored samples? Samples taken in EDTA or heparin? And so on.

        So what does this mean? It means that if someone can't find XMRV in a study, it is either because it is not in the patients they tested, or their lab could not detect it even if it was there. Or the strain might be different, or they used the wrong tubes, or the diagnosis was wrong. And on and on. Again using the "force", I would not be surprised if some of the quickest replication studies fail to confirm XMRV. But as long as people do not jump to conclusions too quickly, science will win out. Truth will win out. That’s all I am looking for."

        Interestingly, Dr. Bell felt that the Dubbo studies would be a fantastic test for XMRV. Since these studies examined people as they came down with CFS (or not) following an infection if XMRV was found in those who came down with CFS but not in those who did not following the infection it make a strong case that an XMRV infection somehow primes people for a descent into CFS once they get another infection.

        As you may remember, a small percentage of persons developed ME/CFS after Epstein-Barr virus, Ross River virus or Q fever. They must have saved blood from those who came down with ME/CFS and those who did not. Test the blood for XMRV. If it is in the ones who came down with ME/CFS, but not present in the blood of those people who had regular mononucleosis and quickly recovered, we would have the answer. Ah…if only it were that simple…

        A patient has reported that Dr. Lloyd's XMRV study of the Dubbo patients will be released in January. (See below)
      • XMRV Study Page - The studies are adding up. We're up to fifteen studies/groups focusing on XMRV and we may have identified our first release; Dr. Lloyd of the Dubbo studies in Australia is reportedly releasing his results in January, 2010

      Dec 23rd

      • XMRV Global Action Advocacy Group Forms - Participants in the Phoenix Rising Forums just started the XMRV Global Action Group to 'accelerate global access to diagnostics, clinical trials, treatment and prevention for diseases associated with the retrovirus XMRV" Check out their Facebook site.
      • DiagnoseSupport is focusing on getting the word out internationallly about XMRV Section and are providing translations, etc. They've joined with the XMRV Global Action group.

      Dec 21st

      • The Autism-XMRV Connection - Dr. Insell, called the 'nations top research coordinator', expressed real interest in the XMRV autism connection. Not long after the publication of the Science paper Dr Mikovits reported that 40% of a small group of autism patients tested were positive for XMRV. Dr. Insell is taking a real interest in XMRV, stating

        "We are hot on that, and I wish I could tell you more," Insel said. "All I can tell you is that we have an intramural program here which is kind of our home team, which has seen about 400 kids with autism over the last couple of years. And they have been looking at regression; they've been looking at recovery." He said the researchers "jumped on the XMRV thing even before it was published."
         
        Dr. Insel said that he had heard that researchers at the University of Nevada had identified XMRV in about 40% of ASD children studied. "I have been trying to track that," he said. "There is a paper that has been submitted, but I haven't been able to get it, and I don't know what the data look like. But I think this is really interesting."
         
        Why? Because, he said, "If we could just find a small group, and the opportunity to begin an antiretroviral treatment regime, that could be terrific. That would be the kind of thing we're really looking for in this field, is finding the subgroups that might have specific therapies that would make a difference."
      • Whittemore Peterson Institute and the Friends of the Whittemore Peterson Institute - there are two Facebook sites on the WPI. The Whittemore-Peterson Institute Facebook site is the official WPI Facebook site. You can find the WPI's latest releases on XMRV and other subjects relating to ME/CFS there. The Friends of the WPI  has been a site for people interested in XMRV and the WPI to gather and discuss the Institute and its findings. The WPI will eventually eventually close that site and is asking everyone to move to the WPI Facebook site.

        Annette Whittemnore penned a Letter from the Whittemore Peterson Institute on December 19 outlining what Institute has been up to and  the impact its made.

      Dec 18th

      • The XMRV Polls on Phoenix Rising - The results are slowly trickling in with just 12 people thus far taking both the PCR and the Culture tests. Of these 50% tested negative to both tests and only 25% tested positive for an active (PCR) infection.  On the other hand regard to the separate Culture test - which test to see if XMRV is present in the cells about two thirds of the people have tested positive.

        That "Latent'  Virus-         My understanding is that researchers refer to viruses that are not traveling in the bloodstream and infecting other cells as 'latent' but  that they are discovering that 'latent' is a decidedly poor choice of words as these viruses can be quite active in the cells they're found in. Since XMRV appears to be found them immune cells it could be disrupting their function - latent does not necessarily mean not significant. It does mean the virus does not appear to be actively spreading in the body.

        Having a negative test result may or may not be positive event depending on how you view the situation. Check out how a member of the Phoenix Rising Forums is dealing with her surprise at her negative result.

        Both Dr. Klimas and Dr. Bateman and, in fact, the Cooperative Diagnostics Lab - suggest patients not get tested until we have a standardized, independently validated test. This doesn't mean the VPI Dx test is not good - it was clearly good enough to get into one the most prestigious journals in the world - but that it's probably not perfected; that is while most of the people taking it will get an accurate result there will be some people, probably only a few, who may not. That's my understanding. A standardized test paid for by insurance may be ready in six months.
      • More From Dr. Klimas  - Dr.Klimas cautioned everybody not to get too excited if some negative studies pop up - she expected to see studies with highly positive and highly negative  results show up and everything in between. She noted that she's been contacted by several researchers who want access to her samples but she's been very careful. Because researchers use a variety of different methods to look for viruses - and methods to make all the difference - she's focusing on what methods they're using.

        It sounds like we should be ready for a rather turbulent period! Enough attention has been focused on this virus, though, that Dr. Klimas seems fairly positive that the research community will get to the bottom of what's going on; ie. we won't be left with lingering questions as we were after the DeFreitas retroviral finding in the early 1990's.

       

      Dec 16th

      • Dr. Bateman's Lecture on XMRV - this is almost an embarrasment of riches. A video of Dr. Bateman's recent 1 1/2 hour lecture on XMRV has just been posted online. Dr. Bateman is one of most active physicians serving on the CFSAC and IACFS/ME. She runs the OFFER group in Salt Lake City and is well acquainted with Dr. Peterson's work. She is another professional who came to ME/CFS the hard way - her sister died of CFS. (While you're there check out OFFER's large selection of video presentations). Like Dr. Klimas Dr. Bateman is an ace at presenting scientific information in a clear, understandable manner. She was more cautionary than Dr. Klimas regarding XMRV.

        Inheriting XMRV? - Both she and Dr. Klimas talk about the possibility that you could've inherited this virus! Its clear that mice pass this virus down in their genome from generation to generation. Do humans as well? No one knows but its definitely a possibility. (You can see why the retroviral community is so interested in this virus - its an interesting virus! Like HIV its a retrovirus but its like the UN-HIV otherwise; its possibly inherited, its not replicating much, and it doesn't mutate much - its like the other side of the retroviral community just showed up in humans and the researchers would love to get their hands on it.  Dr. Bateman noted that its gotten very little study thus far - thats clearly changed.)

        • That Special Cohort? - Dr. Bateman emphasized how ill the patients in the Science study were and that its unclear how the findings will translate to more typical patients. She noted that the tests to identify haveXMRV are "new, imperfect, (and) not standardized" and rattled off a stream of difficulties associated with PCR, antibody and culture tests; testing is very new and its evolving.

        Treatment - Just as Dr. Klimas does Dr. Bateman emphasized how toxic many HIV drugs are; she noted they were developed to save the lives of people who were dying and that the medical community was willing to tradeoff a high degree of toxicity for saving lives. They can cause a pain disorder (peripheral neuropathy), 'drop your blood counts', give you diabetes, etc. The pharmaceutical community is definitely interested; they are already moving into animal testing and Dr. Bateman has already been approached about being part of clinical trial network.

        The mouse - human connection - We know XMRV came from mice - but when did it jump to humans? Several researchers have suggested that it was fairly recent but Dr. Bateman noted that XMRV has probably been in mice for millions of years! Like Dr. Klimas Dr. Bateman noted that sexual transmission does not appear likely - given the epidemiology of CFS (few husband/wife pairs).

        Testing - Dr. Bateman mirrored Dr. Klimas' suggestion regarding testing - she advised patients not to get to tested yet. Enough interest has been generated in the research community that it won't be long for a test that's been independently validated and standardized to appear. You could falsely test positive or falsely test positive. She also noted that there's no treatment for XMRV yet. She also believes the study results will run the gamut: from almost no patients having the virus to most patients having the virus depending on what types of patients are in the study to what kinds of tests they used.

        The Autism Connection - the WPI didn't just look at any autism patients, they looked at flu-like onset autism- these were the patients they found XMRV in.

        Dr. Bateman is VERY excited about the XMRV finding- what is looking forward to right now is more clarity about it -  which will simply take some time.

      Dec 15th

      • The WPI has a new partner (and we have a new study) The distinguished Cornell University in upstate New York has just posted a job offering for a postdoc for study on XMRV in ME/CFS. Both the WPI and the Columbia University Center for Infection and Immunity are partners. (thanks to Parvofighter for the tip)
      • The XMRV studies keep adding up and now Phoenix Rising has a page specifically devoted to them.
      • Dr. Klimas' lecture - meanwhile more interesting stuff from Dr. Klimas' XMRV lecture. She does not recommend a test right now; for one the tests are still being tweaked - you could get a false positive or negative and for two - there's really nothing you can do about a positive result right now; most HIV drugs are just too nasty for ME/CFS patients - as she said 'you guys are fragile' (more fragile apparently that AIDS patients (!).

        • While its not a cure Dr. Klimas has also, like many doctors, found that cognitive-behavioral therapy is very helpful for improving ones quality of life and getting their symptoms under control.

        She likes Omega 3 fatty acids (4 grams!), COQ10 (look at 120mgs), Isoprinosine (over the counter Inosine) and Xyrem for sleep. (Each has a section on the website)

        Congratulations, again to PANDORA and the CFSKnowledgeCenter for the wonderful job they did taping this long presentation, editing it and getting it online.



      Dec 14th


      • Dr. Klimas on XMRV - Transcriptions of Her Lecture - Part I and Part II

        Dr. Klimas is giving us new insights into XMRV. Some highlights for me thus far: the WPI researchers actually found XMRV in virtually every ME/CFS patient in their study; about 2/3rds of them had an active infection but 30/33 patients without an active infection were found to have a latent infection; that is, the virus was found in their cells.

        Dr. Klimas is also very clear that this virus is causing the natural killer (NK) cell and T-cell dysfunction found in this disease. The NK cell dysfunction is pretty significant since NK cell problems have been consistently found in ME/CFS and I'm not aware they are connected with other diseases. So XMRV provides a very nice tie-in with a particular abnormality in ME/CFS.

        She also reported that drug companies have literally thousands of compounds sitting on their shelves that didn't make it to the HIV market but could possibly work for XMRV.

        Ampligen? Ampligen is a possibility - for some patients. Dr. Peterson has found that it appears helpful in the lab in some patients and not in others.

      Dec 13thzDate">Dec 13th

      Dec 12th

      • Dr. Bell Talks! - The Daily News, a western New York newspaper had a short piece on Dr. Bell's talk on XMRV. What did we learn? Dr. Bell expects that we'll see at least a half a dozen research papers on XMRV over the next six or seven months. With regards to treatment Dr. Bell noted that "There are pharmaceuticals on the market that can kill XMRV in a test tube but there are no conclusive studies done to determine their efficacy on humans". Dr. Mikovits reported the same thing; that there are anti-retroviral drugs sitting on drug company shelves that they did considerable research on but which never made it to market but which might be able to be employed on fight on XMRV. If thats true it gives the medical community a nice head start on this virus.

        Dr. Bell has been able, thus far, to find about 40 of the 60 patients from his original Lyndonville cohort. He'll be testing them for XMRV in Dr. Ruscetti's lab.
      • Dr. Bateman Talks - Dr. Bateman also gave a talk recently on XMRV. According to someone who attended one of the things that stuck out was how different her patients were from the patients in the Science study. If you remember the patients in the Science study were disabled, had RNase L and other immune problems and very low VO2 max scores on repeat exercise tests. Dr. Bateman reported that while a significant number of her patients may be tending that way only about 10% of them are currently that poorly off. Dr. Bateman asked Dr. Peterson at the CFSAC meeting if he thought the XMRV findings would apply to 'typical' ME/CFS patients but he didn't to speculate on that. Dr. Mikovits has said, though, that 95% of subsequent tests on ME/CFS have been positive.
      • A new Lab in the Mix - We know (or we hear) that labs across the country are furiously trying to develop their own XMRV test. Now our source in Utah has identified one for us. The Hepatitis-Retrovirus lab at ARUP is reportedly 'well into" developing their own tests. (One of their researchers, Dr. Ila Singh has been studying XMRV for several years.) Why do we need more tests? We may very well need not them but the more sophisticated labs that dig into XMRV the better chance that we'll know more and more about this virus.

        Thus far we know of three labs that have taken the XMRV 'challenge'; VIP Dx (associated with the WPI), ARUP in Salt Lake City, Utah, and Cooperative Diagnostics in South Carolina. Surely more research laboratories are engaged as well. 

      Dec 11th

      • Dr. Mikovits Grand Rounds Presentation at the University of Florida College of Medicine on Oct. 20th. In Grand Rounds p presentations researchers or physicians simply talk to and get questions from physicians, researchers and students at a Medical School. In this short article on Dr. Mikovits presentation we find out that those XMRV positive multiple sclerosis, autism and FM patients the WPI announced were actually relatives of their CFS patients. Isn't that an interesting fact in itself: that ME/CFS patients perhaps have a high incidence of MS, autism and FM in their family. Sure sounds like neuro-immune territory (XAND?). Check out the article here.

        Dr. Mikovits also reported that all the lymphoma patients at the WPI clinic tested positive for XMRV. (Check out more on the ME/CFS Lymphoma findings here)

      Dec 10th

      • Podcast on XMRV with Dr. Vincent Racaniello, the Columbia professor who's been bloggin on XMRV. His piece on XMRV is about 30 minutes in the futures of Biotech 50 podcast.
      • Dr. Judy Mikovits - the Scientific Director of the WPI (and the one who came up with the idea to search for XMRV in ME/CFS patients - will do a live Q&A on Prohealth on Jan 22nd.
      • Article on CFS with XMRV in it - the CFIDS Association just provided a link to a Woman's Day article on CFS. Its another good article. I've known for several years a real change in the media's attitude towards ME/CFS; its hard to find a bad article on it anymore. Of course the XMRV finding has sped up that process greatly.

      • University of Pacific Talk Embargoed - Just days before the exciting CFSAC presentations by Dr. Peterson and Dr. Coffin, Dr. Mikovits - the Science director of the WPI - made what was described as an even more far-reaching 2 1/2 presentation at the University of the Pacific. A camera crew was there to film it. We were told it would be a week or two and...that was the last we heard of it. Apparently the talk has been embargoed by the WPI because it was very far-reaching indeed and they want to get some more data published before the video is released.


      • VIP Dx Labs Slow Pace - Several people have noted that its taking quite a while to get their test results back and we may have found out why. One of the people on the Phoenix Rising Forums reported that her doctor checked in and learned that they are simply because as she put it "they're absolutely swamped".
      • Phoenix Rising XMRV Forums - have changed; instead of one forum we have three: Research and Replication / Test, Treatment and Transmission and Media, Interviews, Events, etc. Check them out!


      Dec 8th

      • AZT for XMRV?

        A recently released study examined how effective 10 anti-HIV drugs were against XMRV. The bad news was that none of the drugs stopped XMRV activity; the good news was that AZT block XMRV from replicating and from infecting other cells. Thus none of the drugs touched XMRV while it was in the cell but AZT stopped it from spreading and doing its mischief once it emerged from the cell.This was a laboratory study which means the results may or may apply to the more complicated situation in the body.

        Follow the discussion on AZT and XMRV on the Phoenix Rising Forums here.

      Dec 7th

      • The XMRV Testing Polls

        We have a variety of polls running on the Phoenix Rising Forums about the results from XMRV testing. They're using Dr. Bell's Disability Scale to see how people with severe, moderate, mild cases of ME/CFS shake out. Even though the test has been available for over a month the results are coming in very slowly. Thus far of 7 people tested using either the VIPDx or the Cooperative Diagnostics Tests two have tested positive. Check the polls out here; they're at the top of the page.

        Check out some discussions on the test results and why it's taking so long to get results .

        Test results should be flooding in pretty soon as the VIPDx starts whipping out more results and patients get in to see their doctors.

        Thanks to the Forum participants we were able to add a few more replication studies to the list below. There appear to be at least seven pretty well confirmed studies ongoing.

      Dec 5th

        • The XMRV Replication Studies

          Just how many XMRV studies are occurring? Here's what I've found so far:

          • The CDC's HIV division study involving WPI samples, Wichita/Georgia samples and hopefully samples from other CFS groups
          • a large set of studies under the aegis of the Health and Human Services Working Working Group on XMRV in the US (see below)
          • Dr. Nancy Klimas - ME/CFS patients in her ongoing "Good Day: Bad Day" Study
          • Dr. Nancy Klimas - Gulf War Syndrome patients
          • a UK study involving Dr. Kerr and including samples from Dr. Enlander in the US  - Target Date - Summer 2010
          • another UK study from the University College London
          • a Swedish study  - Target Date - Spring/Summer 2010
          • Cornell University in cooperation with the Columbia University Center for Infection and Immunity and the Whittemore-Peterson Institute are embarking on a study assessing XMRV status in relation to functionality
          • the Cooperative Diagnostics Lab in South Carolina
          • A report from the Phoenix Rising Forums stated the Dr. Joliceur at L'Institute de recherche attached to the University of Montreal in Montreal, is doing a study with 50 patients.
          • Dr. Bell skis getting in touch with his original pediatric Lyndonville cohort from the early 1980's. Dr. Ruscetti of the National Cancer Institute will test them in his lab.
          • Dr. Shepard of the MEA reports four 'very good' research groups are 'very keen' to do followup studies and that money is not a problem
          • Dr. Lloyd in Australia hoped to get one together to test his Dubbo patients but its unclear whether he did
          More are undoubtedly ongoing; if you know of more please contact me (phoenixcfs@gmail.com)
        • More on the Two German XMRV Studies Inability to Find XMRV

          Two German studies have been unable to find XMRV in prostate tissue or CFS patients blood. What might explain their inability to find this virus? Dr. Silverman suggested three things; one, since they used different techniques their findings could be different, the XMRV strain in Germany is slightly different and thus PCR didn't pick it up and XMRV simply isn't as prevalent in Germany as the US.

          Since PCR studies 'find' a virus by searching for tiny bit of its genome if that part of its genome is slightly different in Germany than it is in the US a PCR study will not pick it up. Since the virus was genetically quite uniform across the US it doesn't seem likely it would be markedly different elsewhere but it is a possibility. If the third possibility is true then XMRV must be very rare in Germany since the study didn't find any XMRV in almost 600 patients.
        Dec 4th
        • More From Dr. Vernon on XMRV - in the CAA's latest CFIDSLink - One of Dr. Vernons jobs as the Scientific Director of the CFIDS Association is to network with ME/CFS researchers. In this elink she remarks on how the XMRV discovery rocked their world (as well as ours). She also reminds us of the rather long road ahead to validation and how vital other research remains.

          "Many readers may not realize the incredibly competitive and political nature of science. To most of the CFS medical and research community, the XMRV finding published in Science was a surprise announcement. While many investigators were cautiously optimistic and excited about how this could be a game-changing finding, some were ready to “pack up and go home” – mostly because the media blitz read like a “case closed” Sherlock Holmes novel."

          "It takes only a brief review of lessons learned from other remarkable discoveries like HIV to understand that detecting a virus is the beginning. If the XMRV finding is replicated in other CFS populations, validated to be the cause of CFS, and the FDA reviews the quality of XMRV diagnostic tests, then we can “check off” objective diagnosis from our to do list! XMRV is a new beginning, not the end."

          "Personally, I hope XMRV is validated and found to be the cause of CFS – finally we will have a context for all the important and remarkable ongoing research. And in no way does XMRV reduce the importance of ongoing research on immune dysfunction, other pathogens, post-infection fatigue, dysautonomia, HPA axis dysfunction, oxidative stress and altered neurometabolism, etc. On the contrary, it gives these investigators a strategic advantage and a competitive edge for CFS funding opportunities that will advance treatment and prevention."
        • The Health and Human Services (HHS) Working Group for XMRV - The CFIDS Association of America reports that this group will have oversight over the federal effort on XMRV. They will investigate XMRV regarding its presence in the blood supply and CFS. Dr. Suzanne Vernon, the CFIDS Association's Scientific Director will be part of the group along with representatives from the NIH, CDC and FDA. It appears to be a large effort indeed. 

          Regarding CFS the group is taking a three stage approach:

          1. First they will attempt to standardize and validate tests for XMRV. Then they'll test 1,200 healthy donors and 100 patients provided by the Whittemore Peterson Institute.

          2. Secondly they'll assess the prevalence of XMRV in the general populations, the blood supply and in other groups of people with CFS


          3. Lastly they'll dig into to how XMRV is transmitted , what effects it may have and how it may affect other groups


          For more on the HHS group click here.
        • Preliminary tests suggest XMRV may not be found in German ME/CFS patients. From the Phoenix Rising Forums:

          This test was run at the Charite - one of the largest universities in Europe. Le Charitie is a medical research center/school sponsored by the Free University of Berlin and Humboldt University.

          "From the Institute for Medical Immunology (Nov 30, 2009): Recently a workgroup from the NIH and WPI described a new retrovirus XMRV as associated with CFS in US patients. Since then the Robert Koch Institute has tested German patients with CFS for XMRV. The provisional results are different than in the US, as the patients tested so far are rarely infected with XMRV. Further tests are underway in cooperation with the US groups. In the meantime we can not recommend XMRV testing (for CFS). In fact the study from the US does not prove that XMRV causes CFS, only that XMRV is present in CFS patients and has been present for a long time." http://immunologie.charite.de/news/news/xmrv-beim-cfs/

          Several factors including the type of patients being studied and the type of test used make it difficult to interpret this finding. A German team that failed to replicate XMRV findings in prostate cancer engendered questions whether XMRV is found in Germany.

          Check out discussion on this topic on the Phoenix Rising Forums
        Dec 3rd

        Dec 2nd
        • Dr. Vernon explains what the CFIDS Association of America is doing on XMRV:

          "Since we learned about XMRV through the press release issued by WPI, NCI and Cleveland Clinic and then the Science paper once it was published, we have been busy gathering additional information on the many research and policy implications this important study brings. There are many investigators interested in replicating these findings who need funding to do this work.

          At the CFSAC meeting in October, investigators with NIH existing grants were encouraged to apply for supplemental funding, so we contacted funded CFS investigators to encourage and support supplemental requests. This has involved "matching" lab researchers to clinicians who can provide appropriate patient and control samples for testing. We are currently raising funds through our "SolveCFS Campaign" in hopes of issuing another request for proposals (RFP) aimed at early detection, objective diagnosis and treatment of CFS; XMRV proposals would certainly be responsive to such an RFP. 

          We are also seeking up to date information from the various federal agencies now involved in the XMRV research and response.  Interestingly, the detection of XMRV in 3.7% of healthy controls, as reported in the Science paper, raised potential concerns about the safety of the general blood supply.  As also discussed at the October CFSAC meeting, the significance of XMRV in the blood supply will be determined by investigators who are expert in dealing with blood supply safety issues and have experience with other infectious agents that could compromise the blood supply.

          We are working closely with many different institutions and agencies with each new development so that we understand what types of optimized XMRV assays will be most effective for use in larger studies that will advance collective understanding of the role of XMRV in CFS. Although in many ways  the past 2 months have been hectic the CFIDS Association has been doing what we have always done and do best – advocating for and supporting research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment."

          Dr. Vernon was Phoenix Rising's Researcher of the Year. Check out more on Dr. Vernon here. .

        Nov 29th

        • Dr. Vernon talks about how the XRMV finding may affect other research - in particular cortisol.

          Question: XMRV is a really exciting, really hot finding. A lot of non XMRV research findingsnbsp; have been developed over the years; there’s the low blood volume, the HPA axis abnormalities, the  metabolic related exercise problems, the orthostatic intolerance, the gastrointestinal enterovirus findings, etc. There are alot of research findings that can’t at least at this point be directly linked to XMRV. Lets say XMRV is the ‘Game Changer’ in ME/CFS; will research focused specifically on those areas still be relevant?

          "Absolutely relevant!  I hope that XMRV is replicated as it provides a clear biologic basis for CFS and a context for the ongoing pathophysiology CFS research. Once this is done, we will potentially have a context for low blood volume, the HPA axis abnormalities, XMRV, etc.  It is worth noting that even though we can detect HIV and have antiretroviral therapy, people who are managing their HIV infection still have a variety of health issues to deal with including serious endocrine and metabolic problems to name a few."

        • The HPA axis is our body’s “flight or fight” 24/7 system – in other words, it gets activated when the body needs to respond.  This can be in response to infection, physical trauma, stress, etc.  The HPA axis is also a very dynamic system that must respond when needed and stand down when not needed.  Cortisol is one of the major chemicals that mediate the HPA axis response system.  When the HPA axis system is alerted, cortisol is produced by the adrenal glands and pumped out into the circulation.  There it signals to immune cells to produce cytokines to help fend off the infection or heal the wound.

           "Immune cells do this because the cortisol enters the cells, binds to the cortisol receptor in the cell and this complex moves into the nucleus where it regulates cell transcription.  When it is time for the HPA axis to stand down, cortisol travels to the brain and signals to the hypothalamus to return the HPA axis to standby.  There are several viruses that can persist and remain latent in immune cells.  It is possible that these viruses alter the function of the cell where they reside."

          Dr. Vernon was Phoenix Rising's Researcher of the Year. Check out more on Dr. Vernon here. .

        Nov 28th

        Nov 27th

        • CFIDS Association announces that an interagency task force on XMRV has been set up. "In recent weeks, the U.S. Department of Health and Human Services has formed an interagency task force that is meeting regularly to appropriately replicate the CFS studies, address validation studies, development of appropriate screening and diagnostic tests, and to address the safety of the blood supply. There has not yet been a formal statement from the Department about this interagency effort..." WildDaisy on the Phoenix Rising forums e-mails Wanda Jones who fills in the blanks and its  big news indeed; the federal government is mounting a large effort on XMRV.

          "FDA, NIH, CDC--the agencies responsible for blood safety, as well as several non-Federal groups (are members). The team is drawn from the retrovirus expertise of the agencies. They are developing several "panels" of thousands of samples drawn from blood donors, from CFS patients, people with other diagnoses, etc. They are taking fresh as well as repository whole blood samples, not serum. They have standardized reagents, working with Judy Mikovits. The work is just beginning"
        • Dr. Peterson's testimony from the CFSAC meeting is now available in text  on Phoenix Rising thanks to Garcia!

        Nov 26th

         

        Nov 25th

        • Dr. Timothy Luckett proposes that Raltegravir might be the best candidate for XMRV treatment in his blog. The upside of Isentris is that the virus is probably not going to develop immunity to it and that its fairly safe. The downside is the cost ($1100/month) which may inhibit some insurers for paying for it. For more on Isentris.
        • Whittemore Peterson Institute reports on its Facebook page that XMRV is not Dr. DeFreitas virus from the early 1990's
        • Dr. Klimas Answers Questions for the New York Times:

          • I really want to know more about what you think of the specific findings of Dr. DeFreitas. Do you think there are two retroviruses associated with Cfids? I know there needs to be more study, but do you have an educated guess as to how they interact and if they are causative or just epiphenomena?

            For example, if this were solely hypocondriasis or conversion disorder, I would want to know so I could start therapy on it.

            Dr. Klimas responds:

            Elaine DeFreitas’s work and that of Dr. Michael Holmes of New Zealand both involved scanning electron micrographs of viruses. Their findings look a great deal like those that were published in the recent Science article by Dr. Lombardi and colleagues, whichMs. Grady wrote about in The Times,) that found a possible link between chronic fatigue syndrome and the XMRV retrovirus. Could they be looking at the same virus? I don’t really know, because I am not a laboratory virologist. But it makes good sense to me. (the WPI recently reported the virus is not Dr. DeFreitas viru

            I remember in the early 1990s a member of our laboratory, Dr. Roberto Patarca, found evidence of production of an enzyme called reverse transcriptase in our cell cultures, more evidence of an active retroviral infection. So the key thing now is for another reputable lab to find the same thing in chronic fatigue syndrome. Then we will see what happens next.
          • I find the new research hard to believe, especially the follow-up research that shows 98 percent of patients who receive a clinical diagnosis of C.F.S. tested positive for the retrovirus, compared with only 3 percent of controls. Why hard to believe? It is almost impossible to be 98 percent accurate with most clinical diagnoses, especially those without specific tests, like C.F.S. Please comment.

            Dr. Klimas responds:

            Well, it is hard to comment on unpublished data — the number of patients who were shown to be positive for C.F.S. by antibody testing has not been established.

            There are likely to be wide differences when these prevalence studies come out — as you point out, where the investigator gets the blood will matter. Investigators will need to be very clear how they defined the illness, where they got the samples, the demographics of the population, and any defining subgroup information. In my clinical immunology clinic, for instance, there may be more patients with a post-viral or acute onset type of C.F.S. than other medical practices. A rheumatology clinic, for example, may have a stronger fibromyalgia overlay to the population.

            In the population-based Georgia study conducted by the Centers for Disease Control and Prevention, investigators used a broader case definition and identified a population with C.F.S. that was fivefold larger than previous prevalence studies. That study may have included people with other disorders that cause fatigue, and I would expect to see up to a fivefold difference when compared with a more tightly defined group. There may also be regional differences in the prevalence of the XMRV virus that was recently linked to C.F.S. A European study that failed to find the virus in prostate cancer samples suggested that there might be differences in the background population prevalence rate of the virus.

        Nov 24th