Chronic Fatigue, Fibromyalgia, and a willful CDC failure


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)

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  • Pre-existing condition.

  • Sue

    Yes, indeedy.

  • DownandOut

    Jesus Keyrist. The Red Cross told me “no problem” about the Fibro, also. They said the CDC said it was genetic. I give “double red” donations. I may be making people sick SIX AT A TIME.

  • It is disturbing that so many in the medical system are quick to dismiss what they are unable to currently explain. Though scientific validation of concepts is important to validate a theory, every theory starts out as an idea in someone’s mind that must be proven to some level that confirms it is accurate. If only more doctors would start from the symptoms and work toward a cause, then the medical community would have much more knowledge of this condition at this point. At least some curious researchers are interested in seeking knowledge…

  • DJ

    One wonders how much of the current medical position is due to the influence of insurance companies who don’t want to cover what can’t be cured…

  • Sue, right on!!!! It’ long overdue that we expose doctors for what they are – modern day snake oil salemen or circus clown performers – I haven’t seen science based medicine from them in more than two years – just clown shenanigans.

    Me and my brother here in Hawaii have had a relapsing flu like illness for more than two years and recently found out from a non-practicing doctor that it is likely borrelia bacteria infection, often referred to as chronic lyme disease. For two years, the clowns in the state of Hawaii who call themselves doctors gave us one false excuse after another (it’s the thyroid, it’s the medicine you’re taking, it’s mononucleosis, it’s typhus, it’s chronic fatigue, it could be fibromyaelgia, it’s the stomach flu, etc.). They each did a few lab tests, announced their conclusion and gave up on us. They think patients are stupid and can’t see through their nonsense. Why are they given medical licenses – they should have clown licenses.

    I have been reading that often people infected with borrelia bacteria (from tick bites, infection can be dormant for years) are mistakenly given the labels “chronic fatigue syndrome”, “fibromyaelgia”, and even other labels. Chronic fatigue and fibromyaegia are labels doctors can give you so they can dump you or keep throwing drugs at you instead of doing the job we expect of them, which is to find the infection and cure it.

    I have no medical background, but through my own research, found that borrelia bacteria is visible under a simple inexpensive microscope. So I am getting a microscope to look at my blood to see if I can find the distinctively spiral shaped borrelia, to confirm that’s what it is. I encourage EVERYONE with long term unexplained illness to do the same thing. The virus you talk about may be a secondary infection – the borrelia bacteria is suspected of being the main cause also. Bacteria is visible under an inexpensive microscope – learn how to use one or find a student to help you. Astoundingly, in more than two years, not one doctor did this – don’t they learn the basics in medical school anymore?

    There is much more incompetence and corruption in the medical field in Hawaii and related to borrelia infection nationally than explained above and I plan to set up a web site to expose it world wide. As soon as I learn how to set up a web site, I have two years of astonishing documentation of American medical doctor incompetence and corruption to share world wide.

    One piece of that is that medical doctors cannot deal with these long term infections, because for years they have not made the effort to cure these and they are unfortunately stuck in their little world of perscription drugs. You must use alternative medicine, because it is the alternative medicine practictioners that actually practice curing you of these difficult infections, not medical doctors. There are many books available on it too. Medical doctors are a disaster and should never be allowed to represent themselves as knowing anything about these long term infections – they should immediately refer sick people to alternative medicine instead of lying to them and leaving them sick and suffering.

    With the current national health care debate, I believe it is time for me (AND YOU!!) to step in and expose this nationally before people are sucked into more of this broken American medical system. Where are the “doctors”? – if they’re the “professionals”, why aren’t they shouting out to stop the shenanigans? We must all rise up NOW and put an end to the doctor shenanigans. WE CAN REALLY ACOMPLISH THAT NOW, BECAUSE EVERYONE IS PAYING ATTENTION TO THE NATIONAL HEALTH CARE DEBATE!!!

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