[CO-CURE] NOT: Garbage In, Garbage Out Hillary J. Johnson 19 July 2006

[Guest guest]

Women and Children of CFIDS

WACOC

 

~*A comment or two*~

 

A message from Science - - Published E-Letter Responses For Kaiser, 312

(5774) 669-671

http://www.sciencemag.org/cgi/eletters/312/5774/669

 

n-week:

 

Jocelyn Kaiser

Biomedicine: Genes and Chronic Fatigue: How Strong Is the Science?

Science 2006; 312: 669-671

 

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 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.

~

 

Research holds all our answers

Praying for world peace

How does a human heart hurt so deeply and still survive is beyond ME CFIDS

FM...

 

Enjoy the sunsets and sunrises,

 

Diana Saba

Retired Nurse

FM ME/CFIDS

Related Neurological Disorders

 

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