by Mark
On June 12, twelve ME/CFS organizations (including Phoenix Rising) and twenty-three advocates wrote to William B. Schultz, General Counsel of Department of Health and Human Services (DHHS), calling for an immediate investigation into the alleged intimidation of three voting members of the CFS Advisory Committee (CFSAC).
Enclosed with the letter to Schultz was a transcript by Joe Landson of the section of the May 23 CFSAC meeting in which Eileen Holderman stated that Dr. Nancy Lee, the Committee’s Designated Federal Officer (DFO), had intimidated her and two other Committee members, and Dr. Mary Ann Fletcher stated that she had been threatened with eviction from the Committee for expressing her views.… Read More
Mark Berry looks back on the second day of a controversial CFS Advisory Committee Meeting
The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS), through the Assistant Secretary for Health, on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice a year, and the Spring 2013 committee met on May 22-23 in Washington D.C. As usual, the meeting was streamed live over the internet, and video will be available on the CFSAC website in due course. The agenda for this meeting can be viewed here, and the roster of committee members is here.… Read More
by Sasha
Dr Maria Gjerpe, founder of MEandYou
On 9 March, ME/CFS patient Dr Maria Gjerpe started a 90-day campaign to raise $1.2 million (£780,000, €920,000) to fund a confirmatory trial of the effects of immune drug Rituximab on the disease at Haukeland Hospital in Norway. Ninety days because that’s all she could confidently commit: she herself had gone from bedridden to completely well on Rituximab in a pilot study at the hospital but she knew that 80% of patients relapsed after several months.
As Maria worked 12-hour days without a break, the campaign rapidly went international and patients and supporters from all over the world piled on to make it happen.… Read More
On May 12th, 9 ME patient organizations (including Phoenix Rising) and 26 advocates sent a letter to Secretary Sibelius, Dr. Howard Koh, Dr. Thomas Frieden and Dr. Francis Collins at the Department of Health and Human Services (DHHS). In that letter, we expressed our strong concerns about the department’s current definition activities related to “CFS” and called on them to start using the Canadian Consensus Criteria for ME, which requires the hallmark symptom of post-exertional malaise. A summary and FAQ about the letter is here, and the Phoenix Rising article about it is here.
Tell DHHS: Fatigue is not a disease
For those of you who wish to become part of this important initiative, a petition has now been created calling on the DHHS to stop using the term “chronic fatigue syndrome” and the vague “CFS” definitions and start using the Canadian Consensus Criteria.… Read More
by Sasha
You know what to do…
Image from the Kheel Center, Cornell University
I’m writing this the morning after an unprecedented win for our community in an online voting competition. On 1 June, one of our charities, MEandYou, pulled in an astonishing 8,000 votes in only four days in the Stormberg contest. The highest previous level I can remember was less than half that and took several weeks to achieve.
MEandYou won that contest by 1,000 votes at midnight but earlier that afternoon, the opposition were only 14 votes behind.
That shows two things: your vote counts, because the margin can get very narrow; and, as a community, we have very large numbers and can smash these competitions if we come together.… Read More
by Simon McGrath
Prof Stephen Holgate
The new UK CFS/ME Research Collaborative has had its first meeting and it very much looks like it means business. They have plans to rev up the research agenda and raise funds – and they have key players on board too.
The Players
The CMRC is chaired by Stephen Holgate, MRC professor of Immunopharmacology at Southampton, with Dr Esther Crawley as vice chair. There are then five charities and five further researchers to complete the Executive Board.
So far Professors Julia Newton (Autonomic system & fatigue), Hugh Perry (Neuropathology), Paul Little (Primary Care Research), and Peter White (Psychiatry) have been appointed, with one more to follow.… Read More
Mark Berry reports from London on the 8th Invest in ME International ME Conference.
This was only my second year at the Invest in ME conference, but already I feel right at home! The presentations you’re about to read about are only half the story; the opportunity to mingle and network with a family (yes it really does feel like a family!) of top researchers, physicians, campaigners and patients from all over the world, is absolutely priceless. And this year, the new spirit of hope and togetherness in the air was a joy to behold.
The title this year was “Mainstreaming ME Research: Infections, Immunity and Myalgic Encephalomyelitis”, and the twin themes – an emerging consensus around a ‘paradigm shift’ to thinking about ME as an autoimmune disorder, and a focus on strategies for effective research and a breakthrough into the scientific mainstream – fit together perfectly.… Read More
Mark Berry looks back on the first day of a controversial CFS Advisory Committee Meeting
The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS), through the Assistant Secretary for Health, on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice a year, and the Spring 2013 committee met on May 22-23 in Washington D.C. As usual, the meeting was streamed live over the internet, and video will be available on the CFSAC website in due course. The agenda for this meeting can be viewed here, and the roster of committee members is here.… Read More
Joel (snowathlete) continues his series on zoonotic pathogens with an introduction to Bartonelliosis
Photo by girlstyle
Bartonella is a zoonotic that frequently infects humans causing diseases termed Bartonelliosis. Probably the most commonly known is cat scratch disease (CSD) which, you guessed it, you catch from cats (especially cute kittens). Cat scratch disease is caused by two species of Bartonella: B. henselae and B. clarridgeiae. But more than a dozen species of Bartonella can cause diseases in humans including B. bacilliformis which causes Carrion’s disease, and B. quintana which causes trench fever. It is not uncommon for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to test positive for Bartonella.… Read More
This is an extended version of an article originally published on ProHealth as “An Interview With Julia Newton, Founding Member of Newly Launched CFS/ME Research Collaborative.”
By Clark Ellis
Dr. Julia Newton is one of the founding members of the recently launched UK CFS/ME Research Collaborative (UK CMRC), a new initiative aimed at expanding medical studies into ME/CFS by bringing together experts in the field and several of the ME/CFS charities in the UK.
Dr. Newton is Dean for Clinical Medicine at Newcastle University in the United Kingdom. She is also Clinical Professor of Ageing and Medicine at Newcastle University and a Consultant at the Royal Victoria Infirmary within the Newcastle Hospitals NHS Foundation Trust.… Read More
Joel asks a variety of leading doctors, researchers and patient advocates for their reflections on the FDA Drug Development Workshop.
A short while ago, the US Food and Drug Administration (FDA) held a workshop for patients, doctors, and other stakeholders, to talk about drug development for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). You can read a summary of the first and second parts of day one of the two-day workshop, here and here. (Day two summaries will be published shortly).
Following the event, we caught up with some of the doctors and the advocates who attended and asked them each how they thought the workshop went.… Read More
by Jody Smith
I’ll always remember my 25th wedding anniversary as being something special. I wish I could say that this was because my husband and I celebrated in some marvelous fashion, but that wasn’t it. At the age of 49, I thought I was having a stroke.
I got up that morning feeling fine — or no worse than usual at any rate — but when I went to my bedroom to get dressed all that changed. Waves of sensory chaos began to crash over me, and I sat on the bed waiting for it to pass. It didn’t. I’d had a wide variety of sensory chaos and problems with my brain for many years by that time, but this was different.… Read More
On May 12 – International Awareness Day for ME/CFS/FM/MCS/etc – Phoenix Rising joined with 8 other US ME/CFS patient organizations and 26 independent patient advocates to call on the Department of Health and Human Services (DHHS) to finally fix the problem of the many and diverse case definitions associated with our disease. In a letter to Secretary Sebelius, Dr Howard Koh, Dr Thomas Frieden and Dr Francis Collins, we explained our concerns about the current definition activities of the DHHS in relation to “Chronic Fatigue Syndrome”, and listed the steps we believe must be taken to rectify the situation.
You can read our letter to the DHHS here.… Read More
Gabby (Nielk) continues our summary of the FDA Workshop with a look at the second half of Day One – a discussion entitled “Patients’ Perspective on Treatment Approaches”
The FDA Drug Development Workshop for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) took place on the 25th and 26th of April 2013. It was well attended by patients, advocates, doctors, representatives of the CDC and even a few pharmaceutical reps.
The workshop was also broadcast live over the internet, enabling many more people to follow what happened without being there in person. This meeting was an opportunity for us to be heard, and continues to be an opportunity as comments can still be added to the docket until August 2nd 2013.… Read More
Mark takes a look at what’s going on around the world this weekend to mark International Awareness Day
May 12th is International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Awareness Day events also recognize Fibromyalgia (FM), Multiple Chemical Sensitivities (MCS), Gulf War Syndrome (GWS), Lyme Disease, and other chronic neuro-endocrine-immune diseases (NEIDs). Awareness Week runs from May 12th-18th, and the whole of May is Awareness Month. As with many awareness campaigns, ribbons are worn to show support for the campaign – blue for ME/CFS, purple for FM, and green for MCS.
A multitude of Awareness and Fundraising events are taking place this weekend, all across the real and virtual worlds, so I’ve been trawling the web to find out what’s going on.… Read More
Jennie Spotila looks forward to the next meeting of the CFS Advisory Committee – and explains how you can participate.
Current Members of the CFS Advisory Committee
The spring meeting of the CFS Advisory Committee is May 22-23, and we only have a few weeks to prepare. The agenda is not available yet, but we do know about a few new things happening at the meeting.
New Members
There will be some new faces at the table. Rebecca Collier, RN has been appointed to replace Dr. Jacqueline Rose, who resigned last June. Dr. Ann Vincent recently resigned from the Committee, so the number of voting members will remain at 10 (the Charter provides for 11 members).… Read More
by Sasha
Maria gets 300,000 krone from the Kavli Foundation
(Photo: Skjalg Ekeland/BA)
I call Dr Maria Gjerpe’s 90-day campaign to raise money for a crucial confirmatory Rituximab trial a ‘fundraising marathon’ but that hardly covers it. It’s more like a triathlon a day for three months. Maria, previously bedridden for years with ME/CFS, has been working 12-hour days non-stop to fund the Phase III trial on the drug that has, for now, restored her to health.
As she explained in her article in March, Maria doesn’t expect to stay well. She was a patient in Drs Fluge and Mella’s ME/CFS pilot study on Rituximab and received her last infusion of the drug earlier that month.… Read More
by Joel (snowathlete) and Gabby (Nielk)
The FDA Drug Development Workshop for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) took place last week on the 25th and 26th of April. It was well attended by patients, advocates, doctors, representatives of the CDC and even a few pharmaceutical reps.
The workshop was also broadcast live over the internet, enabling many more people to follow what happened without being there in person. This meeting was an opportunity for us to be heard, and continues to be an opportunity as comments can still be added to the docket until August 2nd 2013.… Read More
by Simon McGrath
Prof Stephen Holgate
Last Monday, 22 April, saw the launch of the new UK Chronic Fatigue Syndrome/Myalgic Encephalitis Research Collaborative (CMRC). Set up by Stephen Holgate, MRC professor of immunology, and backed by the UK’s main research funders (MRC, Wellcome Trust and NIHR) it aims “to create a step change in the amount and quality of research into chronic fatigue and ME”. The launch featured some eye-catching provisional results that got good media coverage, particularly the study from Newcastle showing differences in lab-cultured muscle from CFS patients versus healthy controls. And an fMRI study found that patients had to use more brain regions to accomplish the same mental tasks as controls, confirming earlier work in this field.… Read More
Simon McGrath on some important recent research into cognitive deficits in ME/CFS.
Brain fog is a major issue for ME/CFS patients, with 80-95% reporting memory or concentration problems. And while researchers have often found evidence of ‘cognitive deficits’ in laboratory testing, a surprising number of studies have failed to find deficits, leaving some to even speculate that patients’ cognitive problems are more perceived than real.
Clearing away the smoke
Such inconsistent findings are almost the norm for CFS research, with similarly mixed results in many areas including biomarkers. How do you make sense of it all?… Read More
Joel (snowathlete) reviews the research on ME/CFS and Parvovirus B19.
Parvovirus B19. Image courtesy of Dr Jean-Yves Sgro, Virusworld [*]
Parvovirus B19 (B19) is a small virus with an icosahedral shell (a polyhedron having 20 faces) [1] and has been linked with the onset of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). B19 was discovered fortuitously in 1975. There are several other parvoviruses, but most don’t infect humans.
You may have heard of the parvovirus which infects dogs and often causes fatality, but B19 is not the same virus, or even in the same genus, so B19 is not a zoonotic. In humans, B19 is often caught in infancy and causes “slapped cheek”, also referred to as “fifth disease”, and is considered to be mild and self-limiting.… Read More
by Jody Smith
The struggle with energy (or lack of it) is an integral part of life with ME/CFS. Whatever other symptoms each of us deals with, the ongoing energy black hole and knowing when and how to use what little oomph we might have safely, is a conundrum we all grapple with, often without success.
During the times when we just don’t have anything to spare beyond breathing and the most basic thought processes, the quandary of how to use energy is irrelevant and out of reach. The question sticks its tongue out at us in derision.
For some of us though, there are times when we have a little extra energy.… Read More
Do what the shoes say!
(Image by Theresa Thompson on Flickr)
by Sasha
Probably the easiest money we’ll ever raise is up for grabs in an online voting contest in which UK research charity Invest in ME is a frontrunner.
Anyone can vote, from anywhere in the world, and you vote just once, but you need a Google or Facebook account to do so (or to be willing to spring for postage).
The contest
The contest is being held by Direct Debit, who manage automated bill payments in the UK. They’re running a fresh contest each month until June, each with a top prize of £2,000 ($3,100), a second prize of £1,000 ($1,500) and £2,000 ($3,100) divided equally between a small number of runners-up.… Read More
Joel (Snowathlete) talks with Dr Blanco, from IrsiCaixa, about the Spanish AIDS Research Institute‘s latest research on ME/CFS
T-lymphocyte (T-cell)
Back in 2009 when XMRV hit the headlines a number of groups around the world took an interest in ME/CFS for the first time. One of these groups was the AIDS Research Institute IrsiCaixa, in Spain. Then XMRV tripped itself up and ME/CFS became invisible again…Except, it didn’t…
IrsiCaixa were still interested. Dr Blanco and his colleagues had taken a look at ME/CFS in 2010 and spotted a bunch of problems in the immune system. These guys really know their stuff when it comes to immunology and they knew that they were on to something.… Read More
Jody Smith continues her review of INIM’s Patient Conference with a look at Dr Irma Rey’s presentation.
In the fourth video of the Institute for Neuro Immune Medicine’s Patient Conference in January, Dr. Klimas introduced Dr. Irma Rey, Assistant Professor of Medicine, of the Department of Clinical Immunology. Dr. Rey is also Director of Medical Education, Nova Southeastern University, College of Osteopathic Medicine, Institute of Neuro-Immune Medicine.
Without Dr. Rey, none of what is happening at NSU for Chronic Fatigue Syndrome and Gulf War Illness would be possible, Dr. Klimas said.
Lymphocytes the main focus of study
Dr. Rey said that lymphocytes are the main focus of study.… Read More
Joel (snowathlete) talks with Dr Derek Enlander about a range of topics including Ampligen, the FDA, GcMAF, Methylation, and the various research programs at the Mt. Sinai MEC.
Dr Derek Enlander
Dr Derek Enlander is an internationally recognized expert in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Fibromyalgia. Born in Belfast, Northern Ireland, he became a fellow of Stanford University Medical School in the USA and later took up other prestigious positions including Physician-in-Waiting to the British Royal Family on their visits to New York, and it was here that he set up his private practice, in Manhattan.
His interest in ME/CFS began when a childhood friend in Ireland contracted the illness and asked him for help.… Read More
As the FDA Stakeholder Meeting approaches, we explore the various ways that patients can get involved – and offer some suggestions on how to make the most of this unprecedented opportunity.
On April 25-26, 2013, the United States Food and Drug Administration (FDA) is holding a workshop in Bethesda, MD to discuss how best to facilitate and expedite the development of safe and effective drug therapies to treat signs and symptoms related to CFS and ME. This meeting is expected to attract not only patients and ME/CFS expert clinicians, but also other groups including pharmaceutical companies and the FDA. This is an unprecedented opportunity for us to get the attention and interest of the pharmaceutical industry and to bring a patient perspective to the development and review of drugs for ME/CFS.… Read More
Dr. Maria Gjerpe, an ME patient for 30 years, explains how and why MEandYou are going to crowdfund a Rituximab study.
Within 90 days we are going to raise 7 million Norwegian krone ($1.2 million) to fund a study on 140 ME/CFS patients at Haukeland Hospital in Bergen, Norway.
Will we – the patients, relatives, friends – be the first in the world to crowdfund a clinical trial?
And can we engage both sides of the Atlantic to make it happen?
Yes!
Background
In 2012, a study at Haukeland Hospital on the use of the immunosuppressive medication Rituximab against ME attracted international attention.… Read More
by Sasha
Real mud flying while we’re neck and neck! Photo by Paolo Camera on flickr.
Quick! You have 27 seconds to win $5,000 for an ME/FM charity!
So please – don’t think! – do this now and then come back and read about why you did it:
- Click on ‘N’ to get the list of charities beginning with ‘N’.
- The second one down is the National ME/FM Action Network. Click on the ‘Vote’ button.
- Enter your email address in the box that pops up, do the Captcha thing to prove you’re not a robot, tick the box accepting the terms and conditions and hit the ‘Vote’ button.
… Read More
by Sasha
Photo by Sirsnapsalot: best name on flickr
The internet! Full of lovely free stuff. Until recently, we expected to get our news, expert advice, gossip – pretty much everything on the web – without paying.
Some content providers write for fun and don’t seek payment, but others need an income from their work. They get that via click-through advertising or because their content is advertising their goods and services. Some providers, notably newspapers, thought they could rely on advertising to pay for their free content but it didn’t work, and they have now set up paywalls. In other words, what looks free actually has to be paid for somehow or it will fold.… Read More
