Recent research has found xenotropic murine leukemia virus-related virus, or XMRV — a retrovirus in the same family of viruses as the AIDS virus — in nearly 98% of about 300 patients with so-called “chronic fatigue” syndrome. The study was performed and a paper co-authored by 14 scientists at the Whittemore Peterson Institute in Reno, Nevada, the National Cancer Institute, and the Lerner Research Institute (Cleveland Clinic). While the highly credentialed team cautioned that they had not yet proved that XMRV causes the syndrome, the lead researcher, Dr. Mikovits, said she thought the virus would turn out to be the cause of not just chronic fatigue but other illnesses, including being linked to particularly aggressive prostate cancers.
Since at least the 1980’s, this disease has been dismissed as ‘yuppie flu’, or a psychiatric condition. The CDC has been dismissive of the idea that there was an infectious cause.
… the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.
An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”
Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves.
As early as 1991 a researcher found a connection between the condition an retroviruses. Not stopping at mere dismissal, the CDC went on the offensive:
In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 chronic fatigue patients. The C.D.C. went so far as to try to replicate her effort, but refused to follow her exacting methods for finding the virus. In addition, the centers’ blood samples became contaminated, and some people at the agency said that administrators ended the research prematurely. Rather than admit any such failure, the C.D.C. publicly criticized Dr. DeFreitas’s findings. That episode had a chilling effect on other researchers in the field, and the search for the cause was largely abandoned for 20 years.
I clearly remember the controversy of the 1980’s and 90’s. One of the major concerns at the time was that sufferers would be eligible for social security disability and insurance benefits … a bunch of malingerers swelling the ranks of the disabled. And now, it seems, for the financial benefit of insurance companies and the social security benefit administration, a public health agency vigorously suppressed the results of legitimate scientific research, showing this is an infectious disease — transmitted in bodily fluids, just like HIV — with serious public health consequences.
I have fibromyalgia and chronic fatigue. I’ve been told, repeatedly, that what I experience in my body is really all in my head (when I’ve been thin), or a consequence of being overweight (when I’ve not been thin). I’ve been advised to diet, to take anti-psychotics and even to receive electroshock therapy … and, as a result, have not sought serious medical help for the condition for over two decades. During that time, as a good citizen, I’ve periodically given blood. Each time I’ve disclosed that I have fibromyalgia, and each time the blood donation center staff have said, “no problem.” How many thousands of people have fallen ill because of the CDC’s actions — and how many from mine, because I may have inadvertently spread the virus via blood donations?
(WSJ: Recent unpublished data shows “very strong possibility” XMRV is cause of CFS. Blood tests are needed to determine who has it and whether they should be blood donors – Bob)