Index
Prognosis of CFS
What is the Prognosis of CFS?
Money being spent on CFS Research
Positive Prognosis but still dangerous



Prognosis of CFS

Taken from the MEssenger by M.R. Hiller, Special to the Guardian dated May 1997.

Studies are under way investigating causes, possible treatments and duration of CFS. At this time, reports show the syndrome can last from months to a lifetime. Currently there are no cures and most treatment is confined to combatting the array of symptoms associated with the disease. Research is increasing and new information should be generated during the next four years.

What is the prognosis for CFS?

Very little is known about the clinical course of CFS. It is among the most important areas of CFS research by both CDC and the National Institutes of Health (NIH). The course of this illness differs widely among patients. Some patients recover completely with time, while others seem to get progressively worse. Often, the illness follows a cyclical course, alternating between periods of illness and relatively good health. Some patients improve to a certain extent but never fully recover.

Money being spent of CFS Research

Lindsey's CFIDS Page (Home Pages of Other CFS Sufferers) states:

"Here's something interesting that I found in a book I'm reading called 50 Things You Should Know About the Chronic Fatigue Syndome Epidemic by Neenyah Ostrom:

In July 1991, a CFS patient organization called CACTUS(which stands for CFIDS Action Campaign for the United States) compared the amount of federal research money spent to study various immune system illnesses.
CACTUS found that, for every AIDS patient, the U.S. government spends $750.00 in research money. For every patient with the autoimmune disorder Lupus, $79.00 is spent; for every patient with Multiple Sclerosis, another immune system disorder, $28.00 is spent. One dollar and thirty-three cents ($1.33) is spent in federal research dollars for each estimated CFS patient in the U.S."

She then states "I think that says a lot", and it does. It says that although there are hundreds of thousands of people with CFS, we are each worth only $1.33 in the attempt to find a cure.

Positive Prognosis but there is still danger

CFS is rarely if ever fatal. That knowledge may help you meet the challenge. Most get better in time, and many recover. Dr. Anthony Komaroff noted: "Not one patient that we have seen out of the hundreds that we have studied has had a chronic, progressive downhill course where they have gotten worse and worse and worse over time. No one has had that. So unlike some other illnesses that progress inexorably, this illness is quite different."

In confirmation, Dr. Andrew Lloyd, a leading CFS researcher in Australia, said: "When recovery occurs, and we believe that happens commonly, that recovery is complete. . . . That, therefore, implies that whatever this process is that produces this fatigue state is completely reversible." Apparently patients have no detectable damage to body organs after recovering.

Deborah, who had regularly prayed to die because she felt so sick, finally improved. She feels like her old self and said recently that she plans to rejoin her husband in the full-time ministry. Others have enjoyed similar recoveries. Yet, there is need for caution. Why?

Keith, who suffered a relapse, warned: "It's very important not to underestimate this problem, not to be too quick to think it has passed." When feeling well again, Keith reentered the full-time ministry and resumed his athletic activity, regularly running and lifting weights. But, tragically, the illness returned, and he was bedridden again!

This is the insidious nature of the illness; relapses are common. Yet, they are difficult to avoid. As Elizabeth explained: "It is so hard not to try to make up for lost time when you begin feeling better. You so badly want to forget about sickness you want to do things."

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