From The One Click Group:
Professor Leonard Jason on CFS
Reeves of the CDC.
Professor Leonard Jason writes: "Measurement that fails to capture the unique characteristics of these illnesses might inaccurately conclude that only distress and unwellness characterize these illnesses, thus inappropriately supporting a unitary hypothetical construct called functional somatic syndromes."
One Click comments: "Are the glaring flaws in this CFS study carried out by William Reeves of the CDC et al either research fraud or the deliberate and cynical use of flawed and disreputable information garnering and analysis techniques guaranteed to provide a beneficial psychiatric outcome? It should be noted that psychiatrist Peter White, team leader of the scientifically fraudulent PACE trial that is squandering over £11.1m of British taxpayer's money for psychiatry industry benefit alone, is a close associate of CDC/William Reeves and sits on many CDC committees. This Reeves et al paper represents a disreputable and unethical attempt to falsely conflate somatoform disorder figures to garner further psychiatric funding."
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This has, in fact, been one of the big problems in CFS research.
In the mid-1980s, CDC painted the problem as psychological, sweeping under the rug all the biological facts that were already known to the doctors who were treating the epidemic. The book "Osler’s Web", thanks to research that included the government’s own documents, suggests that there was an ulterior motive in calling it psychological. AIDS had just appeared on the scene and neither CDC nor disability insurance carriers wanted another incurable virus so soon after that one.
Having stated in no uncertain terms that the patients were merely crazy, CDC has had to continue touting that theory so they won’t have to admit they made a mistake, and has structured their efforts to "find a cure" in ways that ensured they would not find any support for a biological cause – nearly two decades ago, Elaine DeFreitas found a retrovirus in CFS patients, CDC could not duplicate her research finding, and upon investigating, she found they were freezing the samples, which she had specifically told them not to do because it would kill the virus. The conclusion of a seasoned researcher was "they didn’t WANT to find anything."
Reeves, whose passion is "stress", was hand-picked to supervise CFS because of his bias that it’s caused by stress, not by a virus. Time and again, he has either completely ignored evidence or twisted it to imply it says what he wants it to say. Even at CDC’s own press conference last year announcing "the first biological evidence" of CFS, he managed to convey to the journalists that the whole problem was stress ... something which is proven inaccurate by 4000+ studies (according to Dr. Komaroff’s count, putting to lie CDC’s assertion that this was the first-ever biological evidence).
To believe Reeves’ version, you’d have to believe that I dealt successfully with the deaths of close family members and dear friends, and the stress of combining full-time work with being a full-time student, but years later, something as simple as cooking dinner (the last thing I did before getting sick) pushed me over the edge and turned me into a psychological basket case.
If coming home from my grandmother’s funeral to the news of my uncle’s death and hearing on the radio before my eyes were open the next morning that two friends (one since kindergarten, the other even longer) had been killed in a DUI accident didn’t push me over the edge as too much emotional stress in too short a time period, then, believe me, a simple day-to-day stressor like having to shop for groceries during the post-work crush or run for the bus wasn’t going to do it, either.
There was no extraordinary stress in my life at the time I got sick; in fact, my stress level was lower than it had been in years. I trace my CFS back to a severe virus with 105 fever; the day before that, I was perfectly healthy, and ever since, I’ve been hitting on four cylinders. Reeves can deny it all he likes, but I was there, I saw it. My boss saw it. The person who cared for me during the virus can describe in detail what he saw, and it wasn’t someone bursting into tears and screaming in an emotional meltdown: he noted objective signs of physical illness like vomiting, diarrhea and a 105 fever. Things that the "psychologizers" like Reeves would like to erase from his and my memory banks and replace instead with a false memory of a major emotional crisis to explain away the inconvenience of my insistence that what I have is biological in origin, triggered by a virus.
Unfortunately, there are those who believe that if they didn’t see it, it didn’t happen. (I’ve had doctors tell me that because I’m not throwing up at 2:30 PM in their office, I also don’t throw up at 7 AM every morning like clockwork; they know better than I do what happens in the privacy of my own home. Thankfully, my current doctor asked the right questions and figured out why "first thing in the morning, before I eat anything" made sense.)
Over the years, CDC has whittled away at the definition of CFS. Where the doctors treating it noted there was always an infectious onset reported by patients, that has been removed from CDC’s definition, which allows for a gradual onset (i.e., bringing patients with slowly worsening psychological problems into the circle). The hallmark symptom of CFS, exercise intolerance, is not in CDC’s definition – the easiest and cheapest way to differentiate between depression and CFS is to send the patient out to exercise and see if they return uplifted or physically collapsed.
There have been some concerns in the patient/activist community, voiced by the physicians and psychiatrists who are patients, that CDC’s patient selection for CFS studies is not selecting patients with CFS, but a large number of patients with psychologically-based fatigue, in order to prove Reeves’ pre-determined answer: that CFS is related to depression or stress or being a fragile female, rather than – as other scientists have proven, biologically linked to MS and polio.
That sort of "research" benefits no one, except Reeves’ ego, by ensuring that his erroneous theory will not be proven wrong.
Patients who didn’t even know they were sick until CDC enrolled them in the CFS study are not indicative of most patients with CFS. We know we’re sick, and often have engaged in a prolonged battle with doctors who think that if a few blood tests are normal, then there’s "nothing wrong", and therefore no necessity for the expensive sleep study, brain scans and neurological testing that would show something very wrong.
When I went for a clinical trial of sleeping pills and reported sleeping an average of 2 hours a night for several years, the doctor supervising the study couldn’t believe that no one had done a sleep study to determine why – it would have proved that I was tossing and turning in pain till 5 AM and disproved the doctors' "nothing wrong" theory. Like CDC, refusing to verify what the patients actually report as major problems is the easiest way to support psychological theories.
The only difference between the doctor supervising the clinicaltrial and my PCP was that one believed me when I said I wasn’t sleeping well because of untreated pain, and the other turned things around in his mind till he found an explanation he liked better, regardless if that explanation matched the facts he’d been given.
That’s also the only difference between CFS experts and CDC doctors: one group believes patient reports of medical history and symptoms, and the other group dismisses what the patients experience to substitute their own version of the facts, regardless if those facts accurately reflect what patients have told them.
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