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Got Chronic Fatigue Syndrome?

You are visiting Barbara Feick Gregory's Chronic Fatigue Syndrome Site

Chronic fatigue syndrome was poorly named.

" 'Chronic fatigue syndrome'  has a real negative impact. The word 'chronic' is associated with chronic complainers, chronic whiners. And 'fatigue' is even worse.

"More profoundly, the name camouflaged the nature of the illness itself: the fatigue in 'chronic fatigue syndrome' was merely a symptom and, compared to the neurologic dysfunction resulting from the structural damage to the brain in the early phases of the disease, a sometimes unimportant one at that. Diseases, after all, are not primarily identified and defined by universal qualities they share with other diseases but rather for the qualities that distinguish them. If disease were named after symptoms, leukemia too might well be called 'chronic fatigue syndrome' and diabetes 'chronic thirst syndrome.' The government's choice of names was so inept, in fact, that many observers came to view it as a deliberate effort to defuse the potentially panic-inducing issue of the eruption of a life-altering infectious disease." 

from Osler's Web by Hillary Johnson, page 219

Chronic Fatigue Syndrome is similar to AIDS. One's ability to fight off disease can be destroyed so it is not CFS that kills you but other infections.

"In both AIDS and Chronic Fatigue Syndrome patients, natural killer cells are almost completely disabled. One study of CFS patients found that their natural killer cells' functioning was decreased by 86 percent.... Of all the conditions in which natural killer cell activity has been studied, only AIDS patients have been found to have natural killer cells as disabled as those of CFS patients. "

http://www.chronicillnet.org/CFS/Ostrom/book_ToC.html

CFS is often misdiagnosed.

I found it curious that MS was often confused with CFS according to Osler's Web. But the victims were better off with the wrong diagnosis because victims of CFS often lost their jobs and couldn't get any benefits. 

CFS sufferers are often told they're not actually sick.

"One of the most puzzling aspects of chronic fatigue syndrome, to casual observers, was the contrast between how sufferers claimed to feel and how they looked" 

from Osler's Web by Hillary Johnson, page 365

CFS sufferers are treated poorly by the allopathic medical community and then highly criticized again for seeking help elsewhere. 

CFS affects a huge number of people. Let's see....I go to a regular doctor and he says I'm a mental case, I should quit whining, hands me a huge bill and tells me to come back a a couple of weeks...or...I go to an alternative medical practitioner who listens to me, advises me to build up my immune system, and gives me some hope.... Somehow, it is not a difficult decision who gets my money. But now there are a number of M.D.'s who have gotten it, and found out they couldn't cure themselves until they looked at alternative treatments. 

CFS is more common among women than men.

When you read the history of the disease, you realize that the medical bias against women is alive and well.

http://www.cdc.gov/ncidod/diseases/cfs/info.htm

CFS destroys lives.

"And if CFS is hard on adults, it's disastrous for children, because it often affects the brain, and children may lose key developmental milestones."

Tired all the time by Ronald L. Hoffman, M.D. - page 210

Suicide rate is high among sufferers. So is the divorce rate. It can make an invalid out of a once active individual. 

"I've never known a single person with full-blown CFS who has not considered taking their own life."

Mark Iverson, president of a CFS association

Two of these patients committed suicide, which is all too common among CFS patients. But three of Dr. Cheney's patients who died, like AIDS patients, succumbed to overwhelming infections that their damaged immune systems just couldn't fight off.

http://www.chronicillnet.org/CFS/Ostrom/book_ToC.html

CFS is misunderstood by the public.

Because it was treated as a joke when it was called "Yuppie Flu", many people still think of it that way.

"...no one in Atlanta understood the disease to be a crippling, life-destroying condition; it was simply 'chronic fatigue,' and as one agency scientist said with a shrug, 'Hell, I'm tired!"

from Osler's Web by Hillary Johnson, page 238

Many people think the CFS epidemic was not due to natural viruses or bacteria.

An excellent on-line book that you can download: "America's Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS"

http://www.chronicillnet.org/CFS/Ostrom/book_ToC.html