Index
Acknowledging CFS
Value of Acknowledging CFS
CFS Receives Recognition
Problem with Name

Acknowledging CFS

Although the CDC is currently assessing the prevalence of CFS, several large medical practices that treat a lot of CFS patients report that two to three out of every four patients with CFS are white women in their 30's to 50's.


A study from the University of Sydney found an increase in a chemical in the urine of CFS patients called "aminohydroxy-Nmethylpyr-rolidine" that correlated with CFS symptom severity. This was described in the April 1996 issue of Biochemical and Molecular Medicine. A study assessing the effects of exercise on a specific arm muscle found that people who were depressed or had CFS had significantly reduced muscle function, compared to people who were healthy. This was documented in the September 1996 issue of the Journal of Medical Virology.

Many studies have proven that patients with CFS definitely show differences in various parts of their bodies compared to healthy people.
This would indicate that CFS is finally being acknowledged and more and more evidence indicates that CFS is becoming a recognized illness.

The Value of Acknowledging Illness

"Doctors who spend a lot of time talking to patients with CFS hear a story that is absolutely repeatable; it's a classic," noted Dr. Allan Kind, an infectious diseases specialist. "I can tell you that Chronic Fatigue Syndrome is real."

More and more doctors now agree. The Female Patient thus encouraged physicians: "Until a definite diagnosis and an appropriate treatment can be established, the physician has a special responsibility to tell these patients that they do indeed have a real illness, and that it is not 'all in their heads.'"

The benefit of validating a patient's illness can be tremendous. When a doctor told one woman she had CFS, she said: "The tears just welled up." To hear a doctor say her illness was real, and that it had a name, was such a relief to her.

CFS Receives Recognition

"CFS (chronic fatigue syndrome) is "a major health and economic threat, second only to that of AIDS."

THAT is what Dr. Byron Hyde of Canada said during the world's first CFS symposium, in Cambridge, England, in April 1990. In fact, Dr. Jay Levy, a San Francisco AIDS researcher, called CFS "the disease of the 90's."

Emergency Medicine explained that CFS is "a multisystem disease that affects the central nervous and immune systems and often the musculoskeletal system." Concern over the disease has become great. When the U.S. magazine Newsweek ran a cover story on it in November 1990, the issue became the publication's biggest seller of the year.

The CDC (U.S. Centers for Disease Control) in Atlanta has taken the illness seriously. In 1988 this leading U.S. health agency officially recognized this mysterious ailment by providing physicians criteria, or a set of signs and symptoms, for diagnosing it. The agency named the disorder chronic fatigue syndrome because its common, major symptom is fatigue.

Problem With the Name

Many, however, feel that the name is unfortunate. They say that it minimizes the illness, since the fatigue that characterizes CFS is different from ordinary tiredness. "Our fatigue," one patient explained, "is to ordinary tiredness what lightning is to a spark."

Dr. Paul Cheney, who has treated hundreds of CFS patients, says that calling it chronic fatigue is "like calling pneumonia 'chronic cough syndrome.'" Dr. J. Van Aerde, who himself was stricken by CFS, concurs. A short time ago, this doctor held two full-time jobs--he was a physician at night and a scientist during the day, besides being a husband and a father. Last year he told of his experience with CFS, and Canada's Medical Post published his account:

"Imagine a disease that zaps all your energy, making lifting the covers to get out of bed a real effort. Walking around the block, even at a snail's speed, has become a major undertaking, picking up your toddler a breathtaking experience. You avoid your study in the basement because you cannot make it back up the stairs without having to sit and rest half way. Imagine, you can read the words and sentences of a newspaper article, but you can't put it all together . . .

"Imagine feeling like you were receiving hundreds of intramuscular injections simultaneously in all your muscles, making it painful to sit, impossible to move, making a hug no longer pleasurable. . .. Imagine frequent chills, cold sweats, often accompanied by low-grade fever. Combine all the symptoms and compare it with the worst flu you have ever fought, except it is much worse and lasts for a whole year, perhaps longer.

"Imagine the anguish and the bottomless disappointment when you relapse again and again, just when you thought you had beaten this thing. Imagine being scared, panicking because you feel imprisoned in a foreign body, and you don't know when or even if it all will end."--September 3, 1991.

The name given the illness in the United Kingdom and Canada underscores the seriousness of the ailment. There it is called myalgic encephalomyelitis, or ME for short. "Myalgic" draws attention to the muscle pain, and "encephalomyelitis" to the effect the disorder has on the brain and the nerves.

Since the disorder affects the immune system, patient support groups in the United States, of which there are now hundreds, have named it CFIDS (chronic fatigue immune dysfunction syndrome).

There are still so many unanswered questions. What causes CFS?; how CFS affect us; the emotions of CFS; coping with CFS, treatment of CFS and some various studies that although prove why the symtpoms exist, still cannot cure it. Why?

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