“I Almost Stole Today”

by cort on November 9, 2009

This blog from someone in the Phoenix Rising Forums illustrates some of the decisions that confront people who have the misfortune to be both unhealthy and poor. What does one do, for instance,  when one only has a few dollars left at the end of the month for some stew and an onion costs 75 cents.  Shouldn’t everyone be able to have a simple onion with their bean stew? How easy it would be just to pocket it….

I contemplated two acts today which may have been either/or unethical and illegal - I’m not sure. Well, actually, I’m sure they were illegal. In general, I find the illegal less problematic than the unethical but sometimes they are convergent.

You see, July and August are both 31 day months and it will become clear in a moment just how this plays into my near crime spree. Those of us on disability really hate 31 day months. That’s a whole extra day to keep yourself fed.

I don’t know why I didn’t take into consideration the 31 day month when I bought the $4.00 flypaper (another story) but I didn’t. And, as it turns out, the flypaper is not useful for the pests for which I bought it which are not flies.

So, here I sat with 3 rolls of unopened, useless to me, flypaper, one open and slightly unspooled roll - they are boxed as 4 - in a 31 day month! Then it hit me - I could return the flypaper with a lie about it being faulty! Yes, yes, faulty flypaper is a stretch, I know.

Anyway, common sense aside, what are the ethical implications of returning flypaper, even three usable rolls, if you’d have to lie about the reason? On the other hand, $4.00 is $4.00 and the cupboard is very nearly bare.

Happily for my Karma, I could not find the receipt! Whew! I don’t know what the karmic cost for returning flypaper under false pretenses is but, whatever it is, I don’t need it.

So, armed with what was left of my monthly stipend: $4.76, I ventured across the street to the drab ‘Value Mart’. Now, doesn’t that sound like it should be an inexpensive place to shop? It’s called “Value” and it’s not the least little bit fancy or charming or anything else that might give one pause. That’s how they getcha - you don’t know what’s happening ’til you get to the checkout.

Figuring a big pot of chili could be fashioned from the rice I had and the canned veg I could buy, I searched among the loose onions for the smallest one. This, in itself was an interesting exercise.

Many of the small onions had soft spots and an ever so slight blush of mold and were quite light so would be cheaper. I thought about whether buying a bad onion would make sense and couldn’t figure it out so I chose a nice, firm, heavy but small onion which I handed to the young man, unpacking impossibly red and enormous (and probably tasteless) strawberries from God knows where, and asked him to weigh it so that I would know it’s price. My onion would be about 75 cents. “75 cents!”, I said, “For an onion?!” He smiled. None who work there would be foolish enough to shop there.

This brings me to the point, if it can be called a point, of this seemingly endless rant. I thought about stealing that onion. It was only the realization that, knowing me, there was a very real danger that I would find myself back there later in the day “confessing” some cock-and-bull story about how I just happened to find an onion in my pocket, probably stuck to flypaper, that stopped me.

Two crimes averted today. No onion, though. Ah well, never mind, there was a lovely loaf of flax bread in the day old shelf! Score! And, when I returned home I discovered that I have three more eggs than I thought! (Egg fairy? We’ll never know.)

Stomach 1 ~ Karma 1

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XMRV in the Spotlight

by cort on November 5, 2009

XMRV was next up at the mike at the CFSAC meeting. First Dr. Peterson went over the published research one more time.  Hearing it again simply reinforced what an extraordinary discovery XMRV may be. His presentation was, in some ways, though, really just a prelude to Dr. Coffin’s  presentation. The co-author of the major text in the field, Dr. Coffin represents the upper tier of  world class researchers that we’ve been wanting to attract for so many years. He was basically our toughest test case; if he was excited about this virus then everyone in his field is.

Good Science! - He was excited. There have been some questions about the demographics side of the study but the science side was better than we patients could tell.  Annette Whittemore said that the Science paper didn’t get easily; Science wanted the virus story but not the CFS part of it. After the WPI dug in their heels and said you’re not going to get one without the other Science made them jump through hoop after hoop. Their ability to do what they did surprised alot of people.

“This is a remarkable finding. Everybody recognizes this is potentially of extraordinary importance”  Dr. John Coffin

A Remarkable Finding - The prostate cancer association with XMRV interested the field in the virus; the Science paper apparently blew the lid off of it. Already the WPI (and NCI and Cleveland Clinic) researchers have accomplished something that its very difficult, even now, to do in HIV which is target the virus in the plasma. Apparently its not difficult to find HIV in cells but its still very difficult to actually capture it in plasma.

The fact they were able to isolate a virally infected cell and put it next to a prostate cancer cell and watch the virus infect the prostate cancer cell was a huge win for them. The fact that Dr. Peterson was able to thaw out some samples that had been frozen for 25 years and then grow virus out of them apparently just blew the virologists minds.

When they looked for it in the ‘activated’ immune cells they found it in a very high percentage of them - which suggests an active infection. (Immune cells become ‘activated’ - basically put themselves into overdrive - once they encounter a pathogen. ) They’ve also been able to induce the virus to grow in a number of cell lines (prostate cells, B and T cells).

None of these steps should be taken for granted.  Getting a pathogen to grow in cell lines is a very important step in studying it. Not only can you grow alot of virus when you do that but you can study  the virus intimately. It’s often, however, difficult to put viruses in a test tube and get them to actually grow in cell lines. For instance, decades later, hepatitis C virologists have still never isolated the hepatitis C virus (they sequenced  its genome instead) and have never been able to grow it in a culture. Because of this essential elements of its biology have escaped them. (VIPdx began offering a culture test for XMRV a week ago).

The Bad Virus on the Block? - Nobody knows what effects XMRV does or does not have but its clear that the family of retroviruses it belongs to is a nasty one. These gamma retroviruses are known to cause a slue of cancers in animals including lymphoma (aka Incline Village) and leukemia.  This is part of what’s fascinating to researchers about the virus; could it set the stage for all sorts of cancers? Annette Whittemore said breast, leukemia, lymphoma, etc. researchers are all going to take their shot at this virus.  Over the next couple of years its possible this virus shoot from near obscurity to being very well understood in the scientific community.

Not HIV! - XMRV is about as different from HIV as a retrovirus can be in several ways.  XMRV doesn’t appear to replicate rapidly which means it has a low mutation rate and suggest it might be relatively easy to create a vaccine for but also gives researchers less of a window on the treatment end to knock it down.

“The potential pathogenecity of the this virus should not be underestimated”  Dr. John Coffin

Treatments - Its  unclear whether HIV drugs are going to work. (The WPI is reportedly testing them and antivirals including Ampligen in the lab).  Interestingly AZT, which had been sitting on the shelf for 20 years before the HIV epidemic hit, was developed against a gamma retrovirus (like XMRV). Even more interesting the drug developers apparently have a good number of anti- retroviral  drugs sitting on the shelves that didn’t appear to work well enough against HIV but could find some promise with XMRV.

Vaccine Yes, Treatment ? - It may not be easy, though. Dr. Coffin reiterated the fact that the viruses remarkable genetic similarity from person to person (even between people located across the country) meant that chances for finding a vaccine were pretty good and, in fact, one has been developed for a similar virus. The low replication rate, however, apparently make it more difficult to target treatments against this bug. (Different HIV treatments target different stages of its replication process).

(Genetic diversity is essentially a function of replication; the more a virus replicates the more small changes in its DNA accumulate. The fact that genetic diversity is so low in this bug suggests that it is not replicating very much. It could also suggest that a contaminant got into the samples but the researchers appear to have discarded this scenario. )

In key ways HIV is the exact opposite of XMRV; it replicates rapidly and demonstrates high rates of genetic variability. Dr. Coffin noted that the HIV virus will mutate more simply living in a person’s body over several months than XMRV has between people living different parts of the country. What we have with HIV, of course, are alot of treatment options (@30 drugs) and, despite years of enormous effort and money - almost zero advance on the vaccine front.

Hopefully the opposite scenario will not prove true with XMRV. Dr. Coffin reported some antiretrovirals were proving effective at least in the lab against the virus. (Ampligen was reportedly working in at least some patients cells.) Translating the results from the lab to an actual patient is, often difficult to do, however.)

Does Low Replication Mean Little or No Disease? - Not necessarily. A virus doesn’t need to replicate in order to effect the body; it simply needs to be alive and pumping out injurious proteins. The idea of a kind of smoldering infection with low replication rates has caught on in some parts of the research community. Dr. Glazer has,for instance, identified enzymes produced by EBV that can cause a number of negative effects.

Add to that the fact that a large percentage of ME/CFS patients T-cells are typically ‘activated’ (turned on by a pathogen) and then throw in Dr. Coffin’s statement that a large percentage of activated cells carry the virus and you get the picture of a virus that may be very prevalent in the body; i.e., it might not need high levels of replication to do its work.

I’ve had many people come up to me and ask how I can get involved.  Dr. John Coffin

XMRV and ME/CFS - How to explain the high apparent rate of infection in the ME/CFS patients but not the healthy controls? Dr. Coffin thought of three main possibilities;

  1. the patients happened to live in areas where outbreaks of this virus had occurred
  2. they had an immune system defect that left them particularly vulnerable to the virus
  3. the virus actually infects everybody but is just easier to find (is more active) in people chronic fatigue syndrome (the opportunistic virus theory).

Those ‘Unhealthy?’ Healthy Controls - the Feds are many times more concerned about the 4% of the health controls that tested positive for XMRV than the 67% of the sick ME/CFS patients who did.  If these healthy controls were close contacts of the XMRV positive patients we would expect that number to go down - but they weren’t- they were taken from the broad population. Expect that 4% figure to stay strong - and research money to keep pouring into  this virus no matter what happens with chronic fatigue syndrome

Some Answers - There are alot of questions but one important one - how widespread is this virus in ME/CFS and what types of patients carry it? - should be answered soon. Dr. Bateman and Dr. Klimas and others have their blood samples lined up and ready to be tested. Dr. Bateman stated she’ll be sharing her results as they come out.

“There have to co-factors” Dr. Peterson

No Simple Answers - Even after we learn just how widespread this virus is the situation will remain complex. Since we know that many people can carry this virus and still remain healthy its clear that the virus is going to need at least one ‘partner’ to work with in order to wreak its damage.  What that other essential element is is, of course, unclear. The virus’s cortisol receptors indicate that it reacts in some way to cortisol. High cortisol levels could concievably trigger its activation but ME/CFS patients, at least in the later stages of their disease, are known to have low cortisol levels. (Could the opposite be true? Could high cortisol levels send it into hibernation and low cortisol levels leave it in an activated state?).

The Money - We’ve seen that the traditional sources of ME/CFS research in the federal government, the ORWH and the CDC’s CFS program have been left by the wayside.  The research money for this virus is coming from other sources. The retrovirologists want in. When something this potentially big comes on the scene they find ways;  they shift funds around at their labs, they drop projects…they basically do what they have to do to get their foot in the door. The CDC’s HIV team started their XMRV project the day after the Science paper came out.  The WPI, the CFIDS Association, basically anyone with blood samples is getting with requests - some of them from world renowned resesarchers. (The CFIDS Association requires their investigators to bank samples for future study)

“There are pockets of money at the NIH that can be tapped” Dr. John Coffin

The researchers will pretty quickly have to tap traditional funding sources, though, which historically has been a problem. Every ‘CFS’ grant to my knowledge automatically goes to the CFS grant review board - often a death trap for ME/CFS grants. These review panels typically have been top loaded with pain (and dental!) researchers and rarely have reviewers with immune expertise. The expertise of the review panel is supposed to match the types of grants before them. Will they this time? Only time will tell.

Doing It Right - Interestingly everyone - the NCI, the CDC, the Blood researchers, are developing their own tests. Dr. Miller explained that you can set up a PCR test for a virus almost overnight.  PCR tests simply screen for select bits of DNA in a virus.  The  problem comes when the different labs choose slightly different sections of DNA to test or prepare the ‘reagents’ the virus comes in differently. (One reagent can be far better at uncovering the virus than another.)   The Dr. Coffin stated that agreeing on the right test - a validated, standardized assay - for XMRV was the critical issue facing the field. He hopes that will be done in six months.

The Other Stuff - Its going to take years and years to figure out how this virus - if it is proved to be a or even the major factor in ME/CFS - creates its effects.  Meanwhile research into its downstream effects of it - the low blood volume, the gastrointestinal problems, the immune, HPA axis and autonomic nervous system problems etc. - will remain vital. People with AIDS don’t die of HIV - they die of opportunistic infections that show up in HIV’s wake and thirty years later researchers are still trying to figure out how to deal with the  ‘downstream’ effects of having a retroviral infection. If XMRV turns out to be ‘it’ the same will most likely be true for ME/CFS.

Wanda Jones - Wanda Jones is proving her worth in different ways every meeting; there was the first webcast, then the upgraded webcast, the increased organization, the more expansive website. Dr. Coffin was her ‘catch’. She called him the day before and got him in there.  She’s stuck her neck out on this meeting (3 cameras this time and we took up the Lobby of the building - those are government resources she’s using!) and it paid off -  hence her big smile when she announced almost 900 hits the first day of the videocast and the room was full. Congratulations to everybody who came out or clicked in and good for the CAA as well for targeting her at the Office of Women’s Health (OWH) and pushing for her to come on board.

XMRV Information Center

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Atlanta Journalist Smacks the CDC

by cort on November 3, 2009

The CDC Problem - The CDC attempted to explain away the patients explosion of frustration at their Chronic Fatigue Syndrome (ME/CFS) program as the result of a well organized  plot by the CFID’s Association of America.  They haven’t yet come up with a good explanation for the avalanche of criticism visited upon them by the professional community.  Instead of responding to the IACFS/ME, the federal advisory committee on CFS (CFSAC) and numerous professionals they appear to have buckled down to run out the storm.  The storm has been raging for the last year and with Annette Whittemore calling for a Congressional Investigation into anemic federal response to CFS and Dr. Reeves fanning the flames with his comments on ME/CFS patients next big hope,  it doesn’t show any signs of letting up. 

And yet thus far - so far as the patient community can tell - nothing has made any difference.  Dr. Reeves continues to act with impunity, making promises and then breaking them quickly afterwards.  Hilary Johnson’s recent blog exposed considerable dismay among the rank and file at the CDC but there’s no sign yet that administration officials themselves are feeling the heat.

They may be soon. For the first time an investigative journalist has joined the fray.  Jim Walls at Atlanta Mainstream, located in the CDC’s hometown, Atlanta, just raked the CDC’s CFS team over the coals for the pitiful program they’ve run.  In truth he’s just dipped his toes into the murky water that has been the CDC’s CFS research program over the past couple of years. We could really do with a full blown investigative series. Let’s make it happen.

If real change is going to come its going to come now.  Change is coming anyway; the discovery of XMRV, accomplished that but how far that change will go, though, is partially up to us.  Lets bring some heat -  check out the article, give Jim Walls some hits, and leave your comments. Lets give him a reason to start really digging. 

Maybe we can finally get our missing partner - the media - involved in taking a good hard look at the biggest chronic fatigue syndrome program on the planet.

Dig Deeper! CFSAC Pt I: the Art of Evasion

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CFSAC Pt I - The Art of Evasion

by cort on November 2, 2009

It was as if someone had transported the CFSAC committee to a different planet.  Down from their small perch on at top of the building into the main lobby with the banks of lights shining  down and three cameramen following their every move one wondered if this might be what the future looks like. 

The people who followed the proceedings got a taste of everything; the stirring science, the banal presentations by the ex officio’s, the piercing questions by the CFSAC members, (the not so piercing questions), the powerful presentations by the patients, the Orwellian government speak, the mind numbing rules. It had everything, good and bad, that our federal government can offer.

The Art of Evasion - If the future was upon us it was hard to tell from watching the first part of the meeting. Watching the government officials (’ex-officio’s) as they tried to simultaneously express their agencies deep commitment to ME/CFS while explaining away their agencies miserable efforts was numbing. 

SSA - The first presentation by the Social Security Administration was quickly forgotten in the excitement of the day but it well demonstrated how easily a professional bureaucrat can reduce well meaning professionals to irrelevance . The CFSAC - fed up with the SSA’s tardiness at answering some questions - hammered the SSA representative at the last session making him look ludicrous. This time two new SSA’s reps showed up and effectively  nixed  the possibility of another experience like that by using all their time reading long prepared statements - a tactic that the Committee is hit with frequently and desperately needs to learn how to counter.

HRSA - Things were no better with HRSA.  The HRSA representative offered to dialogue with the Committee about the process of creating and disseminating clinical guidelines on ME/CFS only to be reminded by Dr. Klimas that she’d proposed that a year ago and that the IACFS/ME was ready to produce them for the HRSA anytime they could use them.

NIH - One had the feeling listening to Dr. Hanna of the NIH that one was in the  wrong room or in some sort of time warp. It was almost as if the XMRV finding had never occurred. She somehow thought that the creation of a ‘WIKI’ website for researchers would - in lieu of research funding for XMRV -  stir up some excitement. That announcement, understandable, fell as flat as a pancake.

Remarkably the head of our NIH research program almost forgot to mention that a major grant offering for ME/CFS was in the works - but for 2011. At that point Dr. Klimas got that kind of whacked in the face with a shovel look and asked what the CFS Research program at the NIH was doing to take advantage of the excitement generated by the XMRV finding NOW? Precisely nothing. Dr. Hanna explained that the CFS research program is not working on NOW - its working on a year and a half from now.

Like almost everything the ex-officio’s say her statement was both true and false. They are in the 2011 budget process now but its also true that  when the NIH really perceives an opportunity is present it finds a way.  We’ll see that the NIH is finding a way with XMRV but the program that Dr. Hanna runs is not; it is as usual, more than a day late and a dollar short - our CFS  Research program is completely irrelevant at this point of the game.

It got even worse. RFA’s are big deals; they add a considerable amount of money to the field and last one we had was in 2005.  Dr. Hanna actually started talking about this one  6 months ago. As she went through the steps required to produce the RFA it was clear that nothing has been done in the last six months and this grant  opportunity still existed in Dr. Hanna’s head only.

It brought to mind the last RFA which fell 2 years behind schedule and only got done after the CFID’s Association got Senator Harry Reid to put the hammer down on the NIH. This is not all Dr. Hanna’s fault - the structure of the CFS Research program at the NIH is a recipe for tardiness and inaction - but she has, nevertheless, been stunningly unproductive.

See Teflon Woman at the NIH

CDC - Dr. Miller of the CDC was in the hottest seat of all as he struggled to explain his chief investigators remarks about the XMRV paper. Dr. Snell and Dr. Jason asked him what he thought of Dr. Reeves first discrediting the WPI’s results (and the Science journal!)  and then openly stating that he didn’t think the CDC would replicate their results. He explained them by saying nothing about them and reiterating the agencies commitment to ME/CFS.

Collaboration or Not? - Later I asked him about the CDC’s effort and he became quite impassioned about the need for everyone to form a consortium in which they all worked together and shared data and samples, etc. But what Dr. Reeves I asked? Dr. Reeves didn’t send a single investigator to the three day Banbury brainstorming session on ME/CFS at Cold Harbor over the summer. Oddly enough the Banbury Meeting was the first step in the CFID’s Association forming - yes - a International Research Effort on ME/CFS that will require standardized testing, sample and data sharing, etc.

Still Business As Usual - Dr. Miller said the CDC never would have ignored that meeting if he’d known about it. He seemed sincere but that brought up the question, though, of how out of the loop he is regarding a program he’s supposed to be overseeing. Kim McCleary said the CAA had sent the invitation to his boss.  Either he got the invitation or he ignored it. Whatever the case it’s clear that despite the enormous amount of criticism Dr. Reeves program has received  that its still largely business as usual at the CDC.

It’s hard to jive that conclusion, though, with Dr. Miller’s statement that the CFS program actually gets alot of scrutiny within the CDC. Every program at the CDC gets a five year internal review but the CFS program gets yearly internal and sometimes external reviews - a strange commitment to a program who’s budget is shrinking dramatically almost every year. If the CDC cares enough about a program to review it every year why wouldn’t they spend some money on improving it? Could it be that they have no interest in improving it? That the constant reviews aren’t there to help the program but are there to kill it if possible? Or is it just that the CDC, like the NIH, doesn’t have a clue what to do with their CFS program?

Hillary Johnson’s latest blog containing excepts from a CDC message board indeed suggests that the CFS research program faces harsh critiques from the inside as well as the outside. In truth the individuals making up the CFS research program at the CDC have never deserved the rap given their boss.  Dr. Reeves from the beginning made himself the  soul voice of the program but chats with the programs researchers revealed researchers much like you find elsewhere - interested and absorbed in the science (not the politics). 

New Faces in Town - The news from the traditional research groups was nothing if not disappointing.  The XMRV story is much bigger than anything the CFS research field in its present state is able to cope with.  Next up we’ll take a look at XMRV itself and the extraordinary effort underway by researchers new to this field to get their hands on this virus.

Next Up: XMRV in the Spotlight

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Teflon Woman

by cort on October 27, 2009

With her smile and her ingratiating matter Dr. Hanna is the NIH’s Teflon woman for ME/CFS. As Dr. Reeves punches up his next dazzling 20 minute PowerPoint presentation Dr. Hanna throws her few tidbits into the mix and shuts up. It’s remarkable how little interest there has been in what is arguably the most important federal institution for chronic fatigue syndrome (ME/CFS)

She has shaded the truth repeatedly yet she is rarely taken to task. After she told us that no more Centers of Excellence were being built (one reason why we couldn’t have one) we saw COE’s going up right and left.  She promised to reinvigorate intramural group on chronic fatigue syndrome  but all that group did was take a lot of funding that was purportedly on ‘chronic fatigue syndrome’ and spend it on other things. The Roadmap Initiative she promised several years ago simply disappeared without a trace. Ditto with a privately funded effort we heard about a year ago.

At the last CFSAC meeting she broke off in mid-answer to a panel member’s question to begin chatting to the person beside her - an astonishing breach of etiquette. For a person who’s overseen the biggest decline ever in ME/CFS funding ever she’s entirely too comfortable.

Not A Friend to ME/CFS? Even so she’s been thought to be a friend to ME/CFS. She’s knowledgeable and she cares or at least she seems to. Not long ago Dr. Hanna and the Office Of Research on Women’s Health (ORWH) did something that brought even that into question.

A little background is in order. The Office oversees multidisciplinary studies on a variety of women’s health disorders. They are primarily a facilitator (not a funder) of medical research. There is one disease, however, - and only one disease - that they are completely responsible for - chronic fatigue syndrome. In fact it’s the only disease listed prominently on the ORWH’s home page. The ORWH has been the stopping place for research efforts on ME/CFS at the NIH for the past eight years.

Big Opportunity - With the enormous Obama stimulus package landing on the NIH’s door step the ORWH, like all the Offices and Institutes, began jockeying for its share of the cut. Like everyone else the ORWH was asked to come up with specific ‘Challenge Areas’ they could earmark for a quick influx of funds. They were asked to fit their proposals into broad categories such as ‘biomarkers ‘, clinical research, genomics, health disparities, etc. - all hot topics in CFS.

Big Opportunity Missed - The ORWH came up with a wide variety of funding opportunities but none for ME/CFS (http://orwh.od.nih.gov/recovery/index.html) The ORWH’s response, in fact, made it impossible for chronic fatigue syndrome projects to receive funding under this aspect of the stimulus package. For some reason the ORWH decided to ignore the only disease it has sole responsibility for. It’s as if the Heart, Lung and Blood Institute decided not to fund heart disease. One wonders what message it sends to the rest of the NIH community when your home agency won’t even go to bat for you.

This came at a very bad time. The CFID’S Association of America and Dr. Vernon have been working hard for months to come up with a proposal that could take advantage of this once-in-a-lifetime opportunity When they got to the last step in the process - the easiest step - simply finding a place to put their proposal -there was none at the ORWH.

That lead to - as you can imagine - a rather heated exchange between CFIDS Association President Kim McCleary and Dr. Hanna, after which Dr. Hanna promised that she would create a place for us. The first question to ask, of course, is why she needed to be asked? What is our only employee at the NIH is doing there if not this?

Judging from the ORWH website Dr. Hanna hasn’t kept this promise any better than many of her others - according to that website there’s still no place for a CFS grant proposal at the ORWH.

The CFID’s Association of America did find places for it’s grant proposals - in other agencies.  Always with the NIH and the CDC listen now to what they say - they are masters of saying the right things - but watch what they do: they do very little.

Dig Deeper! - the Alpha Dog

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The Alpha Dog

by cort on October 26, 2009

Tantalized by the opportunity to make a difference the ME/CFS community let loose on the CDC over the past year. To its credit the CDC’s review process allowed for that.

Missing the Forest for the Tree - The CDC, however, is not the main game in town - they’re not the alpha dog we vitally need to tame - not at all. Perhaps because they’ve made more blatant errors than anyone else the CDC’s has always assumed an outsized importance in the chronic fatigue syndrome community’s mind.

There’s certainly no disagreeing that they’re important - they are; they’re tasked with  doing  research, interacting with public health officials, educating physicians education, documenting prevalence and costs, identifying risk factors , etc.  but they are not our most important federal agency; in fact they’re not even close.

The Alpha Dog - This is because the CDC can’t even begin to do its job correctly until its big brother in Maryland - the NIH - gets its act together. Developing an adequate public response to a disease (i.e. disease control) - works very well only with diseases that can be controlled. But you can’t control a disease you don’t know the cause of. Likewise educating physicians is great - unless you don’t have any treatments to provide them. An educated physician who still has no bullets in his gun simply makes for a happier office visit.

MIA Agency Uncovering the cause of chronic fatigue syndrome is not really the CDC’s job - it’s the NIH’s job - in fact, it’s all they’re supposed to do. The NIH  is tasked with uncovering the cause of a disease, providing treatments for it. But the NIH has been MIA in this disease for the past 10 years. While the CDC’s presence has at times made things worse you could argue that the NIH’s absence has had even worse consequences. The best researchers in the world aren’t at the CDC, they’re at the NIH and they’ve turned up their noses in disdain at this disease. If ME/CFS Community really needs the CDC to get it’s act together it desperately needs the NIH to finally start getting serious about this disease.

Jennifer Spotila - one of our fiercest advocates on the CFID’s Association Board - - testified to the CFSAC and http://www.cfids.org/cfidslink/2009/060309b.pdf

“There are 215 conditions listed on NIH’s Estimates of Funding. Out of those 215, only one line item is projected to have less funding in 2010 than in 2009: Chronic Fatigue Syndrome. One out of 215. CFS funding is projected to drop from $4 million in 2009 to $3 million in 2010. This 25% cut in funding - especially when no other category is being cut - is emblematic of this entire Department’s lackadaisical approach to CFS.”

“We frequently hear from NIH, as Dr. Hanna said today, that the funding level is dependent on quality grant applications coming in first. I suppose we should conclude, then, that NIH is overwhelmed with quality applications for research on Pick’s Disease which affects fewer than 200,000 people in the US, because that category is projected to receive a 30% increase over its funding in 2008.”

Jennifer Spotila, May 27, 2009

Not Even Chicken Scratch - To get a glimpse of the NIH’s disdain for this disorder consider that it’s receiving about $3 million a year in funding. The NIH could boost funding dramatically and recusitate the ME/CFS  program simply by announcing that they were going to pour $10 million a year into the disease.

That sounds like a lot of money but it’s still chicken scratch in the medical world. That’s not even administrative costs for large diseases (like ME/CFS). The NIH budget is over $30 billion this year . They could provide $10 million with a flick of their little pinky. Yet despite all horrific statistics (1 million affected , disability rates, $20 billion dollars a year in economic losses) they won’t even do that. You are looking at a system that cares nothing about what people need and everything about what researchers think is hot and sexy and will  further their careers.

Right now ME/CFS has become a gotten a bit hot and sexy and it’ll be interesting to see what kind of funding the NIH announces at the CFSAC meeting. Whatever they do announce don’t think for a minute it’s because they all of a sudden care about people with this disorder. The sick fact is that they don’t give a hoot. It means nothing to them. The fact that you may be sick with something they like to study counts for everything. It XMRV doesn’t work out it’ll be back to business as usual before you can blink an eye.

You might say that now that they’re focused on XMRV we’re going to be fine. But if XMRV works out it’s going to have to tie together an enormous number of different strands of research.  According to one patients report Dr. Peterson has even suggested that autonomic nervous system problems could play a key role in XMRV infection and activation. (Do ANS problems come first?)

So while we’re watching the NIH (hopefully) step up to the plate with XMRV we have see if its business as usual  with regards virtually everything else in this disorder.

The mantra with the federal agencies is to trust nothing they say and  focus entirely on what they do. We’ll see a good case of how far trust goes in the next blog.

Dig Deeper: Read Hilary Johnson’s Op Ed piece in the New York Times - A Case of Chronic  Denial

Next Up: Teflon Woman

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A CFS Chart on Every Doctor’s Wall

by cort on October 21, 2009

Chronic Fatigue Syndrome (ME/CFS) is complicated. That’s bad enough for patients but for many physicians it’s entirely too complicated - the last person they want to see walk thru their office door is a chronic fatigue syndrome patient. Given the lack of chronic fatigue syndrome specialists - that’s a big problem - there are no substitutes for educated primary care doctors.

Dr. Lerner believes his Energy Point Index Score would help doctors greatly with their ME/CFS patients and that it should be on every doctor’s office wall. The EPIS is a simple chart that allows patient to quickly evaluate his/her activity levels. It ranges from zero (Bed-ridden) to 10 (Normal).

A Key Factor - If Dr. Lerner is correct your ‘energy level’ is the key factor in this illness. If that’s so then the fact that most doctors don’t have a clue how to measure it is a real problem. The most commonly used measure of energy - called the Fatigue Severity Score (FSS) - is a list of multiple choice questions that focuses on symptoms, requires statistical analysis and takes a lot of both the patients time and the doctor’s time. It’s basically a research tool - which was fine in the days when-fatigue or energy level was considered at best a secondary symptom -but is unacceptable now that we have a disease in which it takes central place.

Of course many other symptoms are present in this disorder but Dr. Lerner asserts that the beauty of the EPIS is how beautifully it charts not only ME/CFS patients energy levels but their other symptoms as well. He’sfound that the lower your Energy Point Index goes the more types of symptoms you have and the worse they are. Conversely the higher you go on the Index the fewer symptoms you have and what an interesting insight this is; symptoms really are a function of energy in this disease. If you can reclaim your energy your aches and pains and problems - most of which you probably didn’t associate with reduced ‘energy’ start to drop away. On a basic level Dr. Lerner believes this disease really is all about energy - and this is one reason he’s pushing to have the EPIS in every doctor’s office.

Defining Improvement - The EPIS also charts improvement (or relapse) in a rather definitive manner. Each level represents a large change in functionality and health. The average score of a patient entering Dr. Lerner’s clinic is between three or four (out of bed 2-6 hours a day) but he sees patients starting out at one or two (out of bed 30 minutes-2 hours a day).

At level five you still have a chronic fatigue syndrome diagnosis but you can with difficulty make it through a sedentary 40 hour week job. Level six is a big milestone because you can start devoting some energy to outside activities other than work. Levels six is the first time you don’t meet the CDC criteria for CFS.

If you can make it to level 7 you can have a fairly normal lifestyle except that you can’t exercise. If you’re a patient of Dr. Lerner’s when you get to level 8 you’ll probably start tapering off your medications and you can start a light exercise program. Dr. Lerner has found that pacing is a critical part of recovery. Until you get to eight or nine any exercise is going to push you back down to a lower level. The EPIS is also helpful in disability evaluations because it gives disability judges a quick and easy way to assess the patient’s functionality. Patients can also use it in their day-to-day lives to assess how their treatments are going, if they’re doing too much activity, etc.

An Official Energy Index - Other rating scales have been developed for chronic fatigue syndrome. Bruce Campbell at CFIDS Self Help has one.  Dr. Lerner’s has a leg up because it’s been validated against the Fatigue Severity Score and in several studies. Dr. Vernon recently argued that the ME/CFS research field needs standards - what better place to start than at energy - a key problem in chronic fatigue syndrome (ME/CFS). An IACFS/ME stamp of approval of an easy to assess energy rating would help get an Energy Index into doctor’s offices. I say let the competition begin.

An “In” in the Office - - I see the EPIS as more than just a valuable assessment tool. I see it as something of a blow to medical ignorance. Yes, it will help Doctor’s deal more effectively with ME/CFS but it will also educate them about the severity of a disease is too often dismissed as ‘fatigue’. Look at the first quarter of the index;

  • 0 - Bedridden
  • 1 - Out of bed 30 to 60 minutes a day
  • 2 - Out of bed sitting, standing, walking 1 to 2 hours a day.
  • 3 - Out of bed sitting, standing, walking 2 to 4 hours a day.

Here we’ve gone through almost 40% of the chart and the best we’ve gotten to is sitting or standing or walking 2 to 4 hours a day. The Energy Point Index Score chart looks like a very effective way of getting MDs to get that this is a severe and often disabling illness.

It would be great to see one on every primary care doctor’s wall.

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XMRV - the Potential For Change

by cort on October 19, 2009

“A supernova (pl. supernovae) is a stellar explosion. Supernovae are extremely luminous and cause a burst of radiation that often briefly outshines an entire galaxy”

This discovery has the potential for being a world changing event in every way for chronic fatigue syndrome patients.  If it really works out - still an if -  one almost has to think in inter-galactic terms to find an appropriate analogy of how different things could be five years from now.  The illumination this type of discovery could cast would prompt researchers to travel down pathways we can’t even imagine right now.  One wonders if any disease has had such a dramatic turnaround as this one may be in store for.

Finding ‘IT’ - If the WPI is right about XMRV the scientific community has finally been given what they’ve been asking for all these years. The lack of ’something specific’ to focus on - an injury or pathogen or even a biomarker  - has been haunting this field and left us in scientific limbo for 25 years. For all its sophistication the research community just abhors the type of complexity ME/CFS has thrown at them. More than anything it wants an easy ‘in’ - something it can dig its mighty technological teeth into.  It’s basically ignored  this disease simply for an almost ludicrous reason - it didn’t know how to get started.

Essentially chronic fatigue syndrome always been too messy of a disease with too many  potentially interlocking parts, too many parameters, too many symptoms (!)  for our finicky left brain dominated research community to bother itself with. We’ve learned the hard way that if you don’t provide the medical research community with the right ‘toy’ it will refuse to play. We thought they would care because we were sick; well, welcome to the real world - they didn’t. It’s clear that solving diseases or saving lives is secondary to our vaunted research community. The medical research field - like most other fields -  is more about peer recognition and getting ahead.  You don’t get points for being sick - you only get points for being sick in the right way. It’s a damn shame and someone should fix it.

Not ‘IT’ - - It’s not that our few, brave researchers haven’t been trying. They’ve have been able to find pretty consistent abnormalities in heart rate variability, natural killer cell dysfunction, RNase L dysfunction, oxidative stress and cortisol and the field is full of interesting findings but funding levels have continued to tank. In truth all of these had their little ‘problems’ - problems that other fields might have been able to sustain but not this one.  HRV and RNase L are too new, oxidative stress is too common, cortisol isn’t low enough and natural killer cells aren’t T cells. None of them, given our puny status have so much as stirred the slumbering research field.

Finding ‘IT!’ - But a pathogen…..a pathogen is different. Researchers have been studying pathogens since modern medical science begin. Researchers win Nobel prizes for discovering pathogens. Popular books are written about ‘Pathogen Hunters”. Pathogens definitely get the juices of the scientific community going. They make careers. In short,  they’re the closest thing to sexy in the research field.

Although viruses may be vanishingly small bits of RNA or DNA they’re infinitely easier to study and understand than are ‘multi-systemic’ disorders. The research community is just beginning (belatedly) to develop the tools and protocols to assess how the systems interact with each other but they’ve been studying pathogens for decades and decades. The protocols are sitting at the ready. Pathogens present the kind of ‘simple’ problem that the research community is really good at focusing at. It really couldn’t work out much better for us.

So what could happen if this finding really works out? What can we expect if this virus is shown to cause ME/CFS (and possibly other diseases ). Why not dream a little?

  • Funding explodes - Chronic Fatigue Syndrome is funded like a small disorder but it’s not a small disorder. It effects about 1 million people. Studies have shown that it causes about 25% of those affected to go on disability. It costs families about $20,000 a year. It costs the nation about $20 billion dollars a year in economic losses. That’s a lot of money even for a disease.
  • Yet this major disease is ranked about 210th in rank of the 215 diseases and conditions in NIH funding. It receives about 3 million dollars a year from the NIH. That’s chicken feed, chump change the NIH throws to keep the beggars quiet. It’s a rounding error for AIDs funding.
  • It’s definitely not disease solving money - you can’t solve any disease at three millon dollars a year. Ten million dollars is still peanuts and hardly worthy of mention. Consider that asthma causes much lower economic losses than ME/CFS yet gets 250 million dollars a year in federal funding. What this means is that there’s ample, ample room for this field to grow. Given its size and scope once this disease is validated think hundreds of millions of dollars A YEAR in funding once the field gets built up. That’s more funding in one year than this disease has gotten in twenty.
  • New Faces and New Places - Expect a lot of new faces from a lot of high places as the field starts to leverage the assets of a huge cadre of pathogen researchers.
  • Bye- Bye Office of Women’s Research  Hello NIAID - The little CFS program that’s been slowly sinking in the backwater that’s  called the Office of Research Of  Women’s Research (ORWH) where its received no funding (that’s no funding!) gets moved back into the mighty billion dollar National Institute of Allergy and Infectious Diseases (NIAID).
  • CDC - After wiping the egg off their face expect things to change at the CDC. It’s hard to imagine them keeping around a virologist (Dr. Reeves) who not only missed the biggest virology in several decades but publicly trashed the finding and has had little interest in anything viral in this disorder. Let’s not forget the virologists at the CDC that will probably be salivating at the chance  not only to unlock the mysteries of chronic fatigue syndrome but perhaps fibromyalgia, autism, prostate cancer and other disorders.  If this works out the CDC, like any institution,will want its share of the glory. Look for it to throw its ace virologists into the fray.
  • Ampligen - Expect Ampligen to finally be approved by the FDA either now or not long from now. If not now expect a well designed, well-funded study (finally!) to quickly show the drug works and for it to get approved shortly after that.
  • Treatment Studies - expect a slew of treatment studies from drug manufacturers seeking to expand the market for their products.
  • Another Dream to Come True - Expect Annette Whittemore’s dream - of multiple WPI’s centered around the present (but larger) WPI - to come true.
  • Annette Whittemore Wins the Nobel Prize - OK, so that’s unrealistic but she, her husband, Dr. Peterson, Dr. Mikovits, Dr. Lombardi and the team should win our version of the Nobel Prize (whatever that is)

Right now there’s still alot of hard work ahead and critical questions to answer and if it does happen it will take time but there’s reason to believe it could. Researchers often, at least in public, play down expectations but the WPI has not. Both in their public announcements and even more so behind the scenes they are very confident in their findings.

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XMRV - Hope and Caution

by cort on October 16, 2009

Who Are Those Guys? Gazing at the distant cloud of dust raised by his dogged but mysterious pursuers Butch Cassidy turned to the Sundance Kid and with some awe muttered “Who are those guys?” Despite all  their tricks that posse had stuck on their trail like glue. Has the Whittemore Peterson Institute’s posse caught one of  the slippiest preys in all medicine? Or will a significant subset of ME/CFS patients slither through their hands?

A good part of that answer may depend on  the answer to  “Who are those guys?” Specifically when WPI researchers called the subjects of their study chronic fatigue syndrome (ME/CFS) patients just who were they talking about? And who will end up having this virus? Answering that question will determine if the WPI posse can corral  the whole disease or just a portion of it.

Lets take a close look at just who was in the little study that shook the ME/CFS world.

Putting Your Best Foot Forward - The WPI did not choose your garden-variety chronic fatigue syndrome patients for their first study. They chose the kind of patients that they had the most confidence in with regards this virus. There’s nothing wrong with this;  its standard procedure in the research world. In their first study  researchers usually include patients they think will best make their case. Those patients still fit the definition of the disease but they’ll often have less than subtle differences.  (Given the vague definition of this disease make that very large differences. This is presumably one reason the CDC went to a random sampling scheme.)

An immune researcher would probably try to include pathogen loaded, cytokine upregulated, fluey patients. A endocrine researcher might fit in patients with hormonal problems. Perhaps not surprisingly that first study usually works out pretty well but the second one by an independent researcher who didn’t try and gild the lily, so to speak, often doesn’t.

When scientists want to find a virus, we look for it in the sickest individuals because often this is where there is likely to be the highest levels of a virus, if present.  Dr. Suzanne Vernon

A Special Group of Patients - In this case Whittemore Peterson Institute was refreshingly direct in how they ’stacked their deck’. They stated  the study participants had ’severe disability’, low natural killer cell functioning, increased pro-inflammatory cytokine levels (primarily IL-6, IL-8), ‘extremely low’ VO2 max during exercise testing and RNase L dysfunction. During a radio interview we learned that 20% of the patients had lymphoma. Without knowing their functional status it sounds like they are housebound and many very well may have been bedridden.

Outbreaks! (Outbreaks?) - They also came from areas where ‘outbreaks’ had occurred. The WPI took a page from  the distant past when they included outbreaks in the parameters. No one to my knowledge has officially reported an ‘outbreak’ in several decades. Why therefore specifically go back to where ‘outbreaks’ had begun (and therefore not include ‘non-outbreak’ areas)?

Was this to highlight the possibly infectious nature of this pathogen or to draw attention to an important but mostly forgotten era of ME/CFS thinking? Or was it central to their case? Was limiting the participants of the study to known infectious events one way the WPI gilded their lily? (Will ‘non-outbreak’ patients fit the WPI’s  scenario? My guess is that they will but….).

Whatever the answer to  that question its clear that these do not appear to be your ‘normal’ chronic fatigue syndrome patients. A recent Pacific Fatigue Lab study, for instance, found low VO2 max levels in about half their participants. A considerable number of those participants came from Dr. Montoya’s and Dr. Peterson’s pathogen studded patients. Given that these participants had very low VO2  it’s possible that a significant number of even pathogen ridden patients might not have gotten into this study.

This first paper clearly referred to a certain subset of patients. Again this is pretty much expected in the first paper but it does make it difficult to interpolate the results to other patients.

The Big Question - Do I have an XMRV infection? Taking a very conservative view of this question and going strictly off this paper you’d have a good chance of testing positive for it if you had the following characteristics; an infectious onset, extremely low VO2 max levels, low natural killer cell functioning, RNase L. problems and increased inflammatory cytokines. (If you have all of those plus lymphoma you’re almost certainly in - but in a very bad way). Even in these very poorly off patients only two thirds of them tested positive for the virus but that is apparently more a function of a not completely accurate test than a lack of  virus - the WPI is working on a more accurate test right now.

Room  For Hope - If you go strictly by the study it’s beginning to sound like it might not apply to the ‘average’ ME/CFS patient.  There is considerable room for hope, however, that it will. Dr. Mikovits reported that 95% of a larger set of patients (n=330) tested positive to an antibody tests. The antibody test did not measure active infection but it did indicate that these patients have been exposed to the pathogen.  Dr. Mikovits also stated that she expects most ‘ME/CFS’ patients will test positive for the virus. Dr. Cheney, our only independent guide to the prevalence question right now, contributed 14 patients to  the study and reported that his results were similar to the group as a whole.  That’s encouraging.

It’s also encouraging that  the patients came from me areas across the US. The virus has also been found in some FM patients, autism patients and atypical MS patients which suggests that the number of people with this virus will broaden not diminish.

Thankfully the number of healthy controls testing positive has remained very low throughout; this pathogen - in contrast to all the others associated with ME/CFS - appears to to be quite rare in the general population - an important finding.

Plus the WPI recently stated that not all the people in the study had abnormal RNase L/NK cell results thus it doesn’t appear that you need to have these immune dysfunctions in order for the virus to be present. More and more it’s looking like the broad group of ME/CFS patients may have this virus. Still the only thing that will seal that deal are studies showing that moderately ill patients are infected.

Professional Recomendations - It wasn’t surprising that the first recommendation from the ME Association was for the WPI to begin

Carrying out further and larger studies using different populations of people with ME/CFS, including people at different stages of the illness (to see if the virus is present in the same percentages in both early and late cases) and in all degrees of severity.

Dr. Vernon echoed this when she stated that

“Independent replication studies should also include patients with mild and moderate CFS, at least one chronic disease control group (e.g., multiple sclerosis, lupus) and sex and age-matched healthy controls.”

Who Are Those Guys? So we don’t really know who ‘those guys’ - the ones with the virus - will turn out to be. Sure we have some tantalizing hints that the virus is  found in more types of patients than the Science paper can show but  before most patients  pop the bubbly they should wait to see studies that contain patients that look like them. The good news is that those studies should already be underway.

Beachhead Established - the Jungle Awaits - This is not to criticize the Whittemore Peterson Institute. It’s about being wary in the face of  a complex issue. Given how research happens these problems are inevitable. The WPI’s first job was to establish a beachhead and they’ve established the most biggest beachhead yet in this disease. Their next job is even more difficult - to try and work their way deeper into the jungle that has been ME/CFS. Hopefully they’ll be able to.

**Addendum - some good news has cropped up regarding the possible spread of XMRV in chronic fatigue syndrome patients. It turns out that one of the criteria the WPI used to select their patients in this study - RNase L dysfunction - is not a factor in who carries the infection. People with or without RNase L dysfunction can test positive for XMRN.

How ironic this is since it was the RNase L connection that led Dr. Mikovits to XMRV in the first place. As they say sometimes it’s better be lucky than right. In this case it looks like we were actually lucky.

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XMRV - Puppet Master?

by cort on October 15, 2009

The idea that  XMRV could be a kind of ‘puppet master’  (eg. Dr. Bell) that allows other infections such as EBV or HHV6 or Lyme or enterovirus to  become exacerbated is generating discussion.  Dr. Coffin suggested such in his article “A New Virus For Old Diseases”. Dr. Huber, a researcher studying endogenous viral elements in ME/CFS has suggested that XMRV might be able to unlock endogenous retroviral elements in our DNA.  Based on the limited results from his clinic Dr. Cheney speculated XMRV could be a factor in autism and ADHD and (wondered about arthrits, asthma and cancer!).  Dr. Mikovits has reported that XMRV can be found in autism and ‘atypical MS’ patients. Its all a bit overwhelming.

Autism - The Nevada Autism Commission revealed that 40% of a ’small group of children’  with autism tested postive for XMRV.  Dr. Mikovits verified this stating ” we have actually done some of these studies (in ASD children) and found the virus in a significant number of samples that we have tested for. It could be linked to a number of neuro-immune diseases, including autism” but that at best it would be one  several factor that contributed to the disorder.  Dr. Mikovits also speculated that the virus could be a factor in  vaccination triggered autism.

Infectious mononucleosis - No one’s mentioned a key factor in many patients journey  - infectious mononucleosis.   Could an XMRV infection be a risk factor for getting infectious mononucleosis; ie. do people who get the more severe form of Epstein-Barr virus infection (infectious mononucleosis) rather than the  less severe form (mild cold)  tend to carry the XMRV virus?

When the Dubbo and  Taylor  groups dig into their samples they could show that XMRV is not restricted to the ME/CFS patients. It turns out that if you have infectious mononucleosis you also have an increased risk of coming down with multiple sclerosis and the WPI has already reported finding XMRV in ‘atypical’ MS patients. Could the scenario go - XMRV infection in childhood = increased risk of infectious mononucleosis = increased risk of ME/CFS or multiple sclerosis.

Other Diseases - ME/CFS is not the only disease with disabling fatigue, cognition problems, sleep problems, etc. Besides related diseases like fibromyalgia there are also a number of diseases which don’t appear to be related to chronic fatigue syndrome at all but which have subsets of patients who look very much like chronic fatigue syndrome patients.  A significant subset of post-cancer patients, post ICU patients, post heart surgery patients, patients with liver disease and multiple sclerosis patients have a very CFS-like condition. Researchers have speculated that they are in fact chronic fatigue syndrome showing up in other diseases.

Still a Stress Trigger? What these conditions share is a stress trigger; whether it comes in the form of an infection, a physical trauma ( fibromyalgia), cancer treatment, surgery, etc.  This, of course that the stress response plays a critical role in the development of this illness. Note that this does not at all conflict with any of the statements that Dr. Mikovits has made regarding possible triggers for XMRV activation; two of them she mentioned - cortisol and inflammatory cytokine levels  - are increased during the stress response. Could the CFS-like post-cancer, post-ICU,  MS patients, etc. patients be harboring the XMRV virus? The possibilites for this virus - at this very early stage when we don’t know much - appear to go on and on.

Why might retroviruses at least theoretically be able to trigger so much disturbance?  Because we’re pretty much stuck with them; instead of eventually getting killed off in the body like other viruses they tend to linger in the body  - i.e. they are chronic - and  they can be pretty good (aka HIV) at creating a condition which other pathogens can take advantage of.

Let’s not forget , though, that most retroviruses are completely harmless. In fact our DNA is studded with the remnants of old retroviruses that have embedded themselves in our genome. Before we can get too excited we need evidence that this retrovirus is tied to the symptoms in chronic fatigue syndrome; i.e. the more retrovirus you have the sicker you are.

Dissenting Views - There is also some reason to believe that this virus might not be some sort of ‘Puppet Master’ that turns on a ‘viral cascade’ in patients. A study by Dr. Nicholson found that one virus does not appear to open the door to another virus in ME/CFS patients. Instead ME/CFS patients as a group tend to harbor one or another opportunistic viruses.  Dr. Natelson reports finding very, very few viruses in the patients that he sees.

Reports from the WPI, on the other hand, mention finding dozens of  different types of viral fragments in the sophisticated tests in chronic fatigue syndrome patients and very few in controls. Is technology the difference here? Or are these physicians looking at different types of patients? Clearly we’re still in the early stages of getting a clear picture of the viral component in this disorder.

The XMRV /XAND Pages On Phoenix Rising

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