help spread the biggest news in ME/CFS history
Hi Friends & fellow revolutionaries,
As some of you may know, the biggest news to hit the ME/CFS community — ever — just dropped a couple of days ago on October 9, 2009. Stories quickly appeared in the New York Times, the Wall Street Journal, and around the world. A retrovirus called XMRV was discovered in myalgic encephalomyelitis/chronic fatigue syndrome patients — it is the fourth known retrovirus to affect humans (the most famous human retrovirus being HIV). That’s right: ME/CFS is quite possibly an AIDS-like illness.
I am emailing this to writers, disability activists, and people who have been directly touched by ME/CFS or AIDS, with the hope some of you will take the time to write or blog about this issue. How big is it? As the Wall Street Journal reported, “the National Cancer Institute was sufficiently concerned to convene a closed-door workshop in July to discuss the public-health implications of XMRV infection. ‘NCI is responding like it did in the early days of HIV,’ says Stuart Le Grice, head of the Center of Excellence in HIV/AIDS and cancer virology at NCI and one of the organizers of the July workshop.”
After publishing their groundbreaking research in Science, researchers at the Whitemore Peterson Institute for Neuro-Immune Disease at the University of Nevada, Reno, the National Cancer Institute and Cleveland Clinic believe this retrovirus is closely linked to Chronic Fatigue Syndrome (though they have not claimed definitive causality) , also known as CFIDS or myalgic encephalomyelitis (or ME/CFS). Continuing unpublished studies by scientist Judy Mikovits have found that as many as 95% of ME/CFS patients have this retrovirus. Mikovits states, “Just like you cannot have AIDS without HIV, I believe you won’t be able to find a case of CFS without XMRV.” Preeminent ME/CFS doc Paul Cheney, MD agrees with this assertion of probable causality: “The finding of antibody or active virus in 95% of CFS and 4% of controls is a result that argues for causality, in my opinion, especially with the associated RNAse-L corruption and NK functional impairment that might predict such an infection,” he writes. Antiretroviral therapies already approved for AIDS are being tested for XMRV.
This research might also apply to other illnesses. As Osler’s Web author Hilary Johnson writes on her blog: “Mikovits and her collaborators may have changed the course of medical history. This discovery may lead in many important directions, explaining, for instance, why immune system cancers—lymphoma and leukemia—have been on the rise for the last twenty years. It may explain why inflammatory cancers of the breast, prostate and pancreas are becoming more common, too. ”
In 17 years of being sick, I have never seen any ME/CFS research receive anything close to this level of media storm. The implications are of course huge: does this explain some of those HIV-negative AIDS-like cases found in the 80s and early 90s that were quickly shuffled under the rug? Is this the reason the government health agencies misspent almost all of their ME/CFS funds in the 90s? Is ME/CFS actually a relative of AIDS? As I wrote in my blog:
Perhaps most astonishing to me now is this quote I read in [Neenyah] Ostrom’s book [America’s Biggest Cover Up], in which she talks about Dr. Paul Cheney’s observations at the time about his ME/CFS patients who were dying of opportunistic, AIDS-like infections:
“Dr. Cheney described the immune system damage seen in CFS patients for the Food and Drug Administration in May 1993. Dr. Cheney told the FDA that five of his CFS patients had died during the preceding six months. Two of these patients committed suicide, which is all too common among CFS patients. But three of Dr. Cheney’s patients who died, like AIDS patients, succumbed to overwhelming infections that their damaged immune systems couldn’t fight off. But Dr. Cheney’s CFS patients, like the ICL patients [those with HIV-negative, AIDS-like disease], appeared not to be infected with HIV, even though they developed AIDS-like immunodeficiencies and, in some cases, life-threatening opportunistic infections.”
Dr. Cheney has since elaborated on his blog about his early research/observations into an HIV-like involvement in ME/CFS:
“Dan Peterson MD, a long time resident of Incline Village, NV (Lake Tahoe) and I worked for over eight years (1984-1992) to link CFS to a retrovirus. Dan first sent five patient samples to Specialty Labs in 1985 to test for HTLV-1 and 4 of 5 were positive. We did this due to incredible disturbances on flow cytometry of peripheral mononuclear cells producing elevated CD4/CD8 ratios due to CD8 depletion as well as scatter patterns (debris patterns) that the laboratory flow cytometrist said she had only seen in HIV infections. A radiologist at UC San Diego, on review, said our MRI brain scans done on CFS cases showing UBO’s (1988), looked exactly likes AIDS cases.”
Ostrom’s book reported in 1993 that Stephen Straus — the long-time government villain/head of the ME/CFS program — also noticed dramatic, AIDS-like abnormalities in ME/CFS. Straus published data that T4 cells were abnormally low in ME/CFS patients — as in AIDS patients (T-cell levels as most people know are cited as a marker for AIDS progression). Get this — Straus explained these findings away by stating that, while ME/CFS patients had abnormally low T4 cells, the cells were not actually depleted: they were just hiding in tissue. He had no proof of this — and never presented any — but his claim of the hide and seek T-cells successfully kept this finding from being noticed! This was of course just one small act in the government’s smoke and mirrors. Dr. Cheney at the time announced that he had some ME/CFS patients with T4 cells so low they could be considered non-HIV AIDS cases.
It’s really strange that as I was fighting tooth and nail for my life most months of this year, trying to outlive this life-destroying illness trapped in my bedroom (which I was unable to even crawl across for many months, after losing most of my ability to move, speak, and even breathe from complications of ME/CFS), I kept hearing the song “Magic” by Olivia Newton John in my head. Anyway, it’s funny because ME/CFS may now be called “XAND” (for XMRV-associated neuro-immune disease) which reminds me of the movie Xanadu and takes me back to that Olivia Newton John song, in which we “have to believe we are magic — nothing can stand in our way.” Can ME/CFS actually start to envision a Xanadu free from this horrible illness? Oh God, I hope so.
Please spread the word.
My blog post: “ME/CFS and the Retroviral Elephant” | Wall Street Journal | Scientific American | The Independent (UK) | The Age Australia | Health Zone (Canada) | Las Vegas Sun | Nature News | Breakthrough Digest Medical News | Hilary Johnson post “Our Vietnam War Ended Today” | Dr. Cheney’s blog