The CSFAC (Chronic fatigue syndrome adivsory committee) meeting was fun! I met people whose pictures I'd seen and some new people too. I was pleased that Dan Peterson came to speak about the new finding of the Whittemore-Peterson Institute: they are finding a new retrovirus called XMRV in over 95% of people with CFS and Fibromyalgia. Very little is known about this retrovirus as it was only discovered about 2 years ago, where it was associated with certain advanced prostate cancers. The strain in people with ME/CFS seems to be slightly different genetically from the prostate cancer strain. The working hypothesis is that the virus infects various immune system cells such as B cells, T cells, and NK cells, weakening their ability to mount an effective response to infections. Consequently, people with ME/CFS end up with multiple chronic infections such as HHV6, Coksackie virus, Epstein Barr Virus, Lyme, Enteroviruses, and so forth.
Although retroviruses are contagious (one of their patients got it from a blood transfusion -- they have before and after samples to prove it), no one knows how this one is transmitted. The researchers did, however, extract plasma from blood and use it to infect cells in vitro indicating that virus particles (Peterson called them virions ) are definitely infectious when they get into blood.
The Whittemore-Peterson Institute has recently partnered with VIP Diagnostics to offer XMRV testing. I contacted the lab and learned that two tests are offered: one checks for the presence of the virus by PCR. The other cultures the blood to see if there is a latent or an active viral infection. I spoke with the lab and learned that it's best to get both tests done. If you test positive for XMRV and have symptoms of ME/CFS, you'll be able to say you have XAND: XMRV Associated Neuro-immune Disease.
I have a test kit on order.
David is terrified every time he feels tired that he's catching it from me, poor guy. According to the research study published in Science, 3.7% of the population carries the retrovirus without symptoms of disease.
After Peterson answered questions, John Coffin, a retrovirologist from Tufts University, spoke to the committee, to [put the WPI findings into the broader context of retrovirology. He seemed to emphasize how much we don't know, and he seemed skeptical that the XMRV-CFS connection would turn out to be causative. Still, I was pleased to hear that retrovirologists all over the world are interested now in studying XMRV because it is one of only 3 retroviruses that infect humans. Although we've lost nearly 20 years (since government research funding closed the door down on viral CFS etiology studies in 1993), so much research in the last two decades on HIV will make it easier for retrovirologists to make rapid progress in discovering how XMRV spreads and causes disease.
There was much excitement about XMRV. Many patients wore lime-green tee shirts stating FUND WPI. Every speaker lauded their accomplishment. Everyone criticize the government for spending sums 20 times higher than WPI without accomplishing anything useful in 20 years. Not a single person spoke up in favor of the two 'therapies' the CDC currently recommended for CFS: graded exercise and cognitive behavioral therapy.
Anne Whittemore, the philanthropist funding the WPI research, who is the mother of a young adult with ME/CFS, got a standing ovation after testifying. Many questions for Peterson and Coffin revealed a high level of excitement that the WPI findings will prove to be the major breakthrough we've all been waiting for.
Mercifully, the villain in our story, Bill Reeves, was physically absent. He was criticized hundreds of times for every aspect of his leadership. People railed into him for publicly criticizing the WPI study in an article in the NY Times. Hostility was great towards his 2005 redefinition of CFS as a 'fatigue syndrome' without any physical markers. Several speakers suggested we christen it "Reeves syndrome" and go back to the name "myalgic encephalomyelitis" (ME) which was used for the neuro-endocrine-immune disease before the CDC ever went out to Lake Tahoe to investigate. Patients unabashedly called for his dismissal. The physicians and researchers who spoke were more polite, but their dislike of his leadership was palpable.
I left feeling that CSFAC was on our side (the side of patients, that is) and that their recommendations were not being implemented by the Department of Health and Human Services or the CDC.
During the afternoon session, I had a wonderful nap at my mother's house, which ended my self-pity at being unable to stay for the entire day.
I came home with a huge pile of papers -- the printed testimonies of everyone who spoke and many who were unable to speak for lack of time. Here are some of the gems of public testimony:
\Basically, they created a new, unveritifed definition which definied a new, much larger data set, but they still used the name, CFS... This is outrageous! This isn't science -- it's a shell game." [Joan Grobstein, MD]
"I have treated more than 2,000 AIDS and CFS patients in my career, and the CFS patients are more sick and more disabled every single day than my AIDS patients are, except for the last two months of life!"
[Mark Loveless, MD]
"My fellow practitioners are frustrated by an illness that is complicated, has no visible signs, no diagnostic marker....At the 2009 IACFS Meetings in Reno, at least six new potential markers were suggested [for ME/CFS], none of which are being explored by the CDC....And while the CDC is busy with epidemiology and sociological studies that have little potential for improving the lifestyle of CFS patients, there are a half dozen reasonable theories that could be tested including the RNaseL Theory, the Nitrous Oxide Theory, the Hydrogen Sulfide Theory, and Glutathione Depletion." [Charles Lapp, MD]
"...a simple internet search reveals that for 2009, NIH was allocated $681 million for obesity, $412 million for depression, $252 million for asthma, $62 million for Attention Deficit Disorcer, $40 million for West Nile virus - compared to a mere $4 million for CFS, with a reduction to $3 million estimated for 2010. It is a cause for despair that psoriasis ($8 million) and hay fever ($6 million) received double the funding made available for CFS research."
[Anonymous ME/CFS patient]
"How could our government and the governments of other nations dismiss and then ignore millions who suffered from "an infectious disease of the brain, as Hilary Koprowski of the Wistar Institute called [ME/CFS] publicly in 1992. Koprowski was an expert in neurological diseases -- he knew one when he saw one." [quoted by a patient from Hillary Johnson's blog, Inside the Labyrinth ]
"The fact that the CDC recommends no tests or treatments other than GET... and CBT.. has had financial repercussions for me. And for everyone else I know with this disease. What it meant to me is that my long-term disability insurance would not pay...my medicines...are not recognized by Medicare as medically necessary." [Cathleen Connor, patient]
"Continuing to use the term CFS is analogous to calling diabetes a minor sugar sensitivity, cancer, a few fast growing cells, or MS, a little balance problem. Obviously, such names would be ludicrous in their failure to portray anything close to a complete picture of these illnesses. Yet that is exactly what has been done by giving us the name CFS." [Tammie Page, patient]
"If the American public knew the true facts of CFS/ME -- that it affects over a million people in the U.S. and the numbers are continuing to climb, that it costs the US taxpayers $17-25 billion in medical expenses and lost productivity each year, that it's likely to be infectious at some point in time, that there are very few physicians trained to diagnose or treat CFS/ME patients, that the effects are so devastating that people not only lose their physical and cognitive abilities but also lose their jobs, homes, and in many cases, their family and friends -- people would be demonstrating in the streets..." [Pat Sonnett, patient]
"When I recommend MRI and immune testing with immunoglobulin levels, T and B cell evaluation, cytokines, and viral titers, I am told that those are esoteric tests and why would I want to order them... It is a rare medical student who has heard of CFS." [Janet Smith, MD, patient]