Wednesday, August 2, 2006

Garbage In, Garbage Out

Thanks to Diana for providing this article from Hillary Johnson, who has repeatedly exposed CDC’s laxity in dealing with CFS. My comments follow.

Garbage In, Garbage Out

Hillary J. Johnson 19 July 2006

I applaud Science, and Jocelyn Kaiser, for refusing to take the Center for Disease Control's latest foray into elucidating chronic fatigue syndrome (CFS) at face value. In doing so, you distinguished your journal from most newspapers and wire services who covered the agency's press conference on the subject.

I am the author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Crown 1996), which first broke the story of the agency's fiscal malfeasance regarding CFS and launched two federal investigations of the agency, both of which fully corroborated my own investigative reporting on the subject.

The Atlanta agency's history with this disease has been much more destructive than the misuse of millions of dollars of Congressionally-earmarked money and the CDC’s subsequent lies to Congress, however. Things started to go terribly wrong when two inexperienced epidemiologists from CDC went to Lake Tahoe in 1987, two years after an outbreak of an unusual disease occurred there. With the publication of their first paper on the subject in 1988, which suggested that what they had newly named "chronic fatigue syndrome" was probably mass hysteria, the agency in effect declared war on those who suffer from this disease.

Soon after, the CDC compounded the damage by issuing a wildly off-base "research definition" that defined the illness according to degrees of "fatigue." Fatigue, as the agency labels the profound exhaustion approaching paralysis that is characteristic of CFS, is only one symptom among many in this multi-system disease. In doing so, the agency set serious medical investigation back by years.

Still, in the successive two decades more than 2,000 peer-reviewed articles have been published in the medical literature documenting evidence for the biological basis for this disease, according to Harvard CFS expert Anthony Komaroff. The self-serving CDC, desperately trying to bolster its tarnished reputation in this field, conveniently turned this fact on its head by claiming its new gene study was the first evidence. Traditionally, and in this latest research, CDC avoids studying patients who actually have been diagnosed by clinicians with CFS on the absurd theory that these patients probably don't have the disease. The logic is reflective of the agency's powerful belief that only its epidemiologists know what the disease is or how to define it. In this case, they avoided looking to clinicians for patients but instead sought out study subjects in a random digit-dialing effort, identifying "patients" by their degree of fatigue. But, as clinical CFS specialists will tell you, fatigue alone is hardly a legitimate marker for CFS. Very likely, the patients included in this study either don't have CFS, or they have some extremely mild form of CFS, if such a thing even exists. Even excluding the scientific failures exhibited by CDC in its highly controversial research definition, there are other reasons to disregard this latest study. Simple logic dictates that people who have avoided seeking medical help for their condition are unlikely to suffer from a severe disease like CFS, one that has been shown in peer reviewed studies, again and again, to rival end-stage AIDS and severe congestive heart failure in its degree of morbidity.

The likelihood that the CDC was even studying bona fide CFS sufferers is slim to none. As they used to say in the computer industry, GIGO -- garbage in, garbage out. Expect more of the same from the CDC where this disease is concerned.

* * * *

CDC has an even longer history of "garbage" where CFS is concerned than Johnson cites.

In 1975, there was an outbreak of a CFS-like illness here locally at Mercy San Juan Hospital. The task of investigating initially fell to Dr. Ryll. He personally knew these people to be hard-working doctors and nurses. Eventually an investigator came for one day, claimed not to be able to find anything in a cursory investigation, and CDC tried to tell Dr. Ryll that his respected colleagues were simply faking because they were too lazy to work.

In isolation, that may not be remarkable, but it starts to look suspicious when you realize that a decade later CDC also went to Tahoe for only one day and claimed not to be able to find anything, again accusing hard-working people of being too lazy to work. Once again, the total strangers from CDC (who didn’t even meet the patients!) claimed to know what the patient’s character and work ethic were like better than the people who’d known the patient for years.

Granny always told you "a leopard doesn’t change its spots", and I’ll tell you, a dedicated professional doesn’t overnight become a lazy bum. A hard worker might chuck the rat race to dedicate himself to becoming a top athlete or best-selling author, but their innate competitiveness prevents them from becoming couch potatoes. There’s nothing in lying on the couch half-watching endless bad TV to feed the competitive spirit.

Not to mention the painfully obvious: laziness is not contagious, while CFS generally occurs in epidemic form.

With the majority of CFS patients reporting it started with "the worst flu ever", it’s hard to put any credence in CDC’s claim (both at Mercy and at Tahoe) that it’s simply mass hysteria. Objective symptoms like 105 fever are pretty hard to fake; you might be able to psychosomatic a low-grade fever of 99, but not all the way up to 105. Although most patients assume it’s just the flu and don’t seek medical help, there have been many cases occurring within hospitals (including the Royal Free Hospital and Mercy San Juan) where the entire course of the disease is observed by people who verify the objective signs such as fever and have no doubt that they are seeing a contagious physical illness.

Dr. Starlanyl, who is both a doctor and a patient, suggests "if all tests are normal, maybe the correct tests haven’t been done". Dr. Ryll eventually found post-viral physical problems he called "infectious venulitis". CFS researchers have found innumerable physical problems that CDC has swept under the carpet: visible damage to the brain, viral damage in heart biopsies, verifiable immune dysfunctions, abnormal proteins in spinal fluid.... Perhaps the reason CDC couldn’t get positive test results for CFS is the same reason they couldn’t get positive test results in the early days of AIDS: there isn’t yet a blood test for the correct virus.

For reasons known only to themselves, CDC refuses to acknowledge any outside research verifying a physical origin for CFS, and continues to focus their own studies on patients who, more likely, have the symptom of "chronic fatigue"as a result of psychological problems, and not the post-viral disease known as CFS. (In fact, the disease was known as Myalgic Encephalomyelitis for decades before the CDC stuck this derogatory name on it; the World Health Organization still calls it ME, and recognizes it as being neurological in nature.)

CFS is such a unique illness that patients with no medical training are easily able to differentiate it from other fatiguing conditions when a new member joins their support group. Yet CDC, with all its MDs and PhDs, seems incapable of making the same distinctions that laypeople can – they seem to be convinced that all "chronic fatigue" is CFS, and that doing studies on depressed people who sleep a lot will produce a cure for the post-viral physical exhaustion that I (and millions of others) suffer.

I really am not sure which is worse: that government funding earmarked for CFS research has repeatedly been misused for wholly unrelated research, or that the funding that has been used for CFS research has been wasted testing patients who don’t have a CFS diagnosis. In the end, the result is the same.

CDC had a cure for SARS in 8 days;

          after 18 years, I’m still waiting!