November 29, 2001 (Cox News Service) - Chronic fatigue syndrome is a puzzling illness that affects more women than men, and that's about as much as can be said with surety.
It has a medical definition: Patients are required to have experienced more than six months of debilitating fatigue plus four of eight other symptoms, including sore throat, tender or swollen lymph nodes, joint aches, muscle aches, headaches, memory problems, and sleep disturbances.
Researchers and scientists have been trying for years to determine what causes it and produces a basket of symptoms that can vary from person to person.
And patients have struggled to find treatments that can alleviate their suffering.
(The Centers for Disease Control and Prevention - www.cdc.org - estimates 500,000 Americans have symptoms similar to CFS.)
Recent research on treatments, published in the Journal of the American Medical Association, found that cognitive behavioral therapy - where doctors try to redirect patients' thinking more positively - and graded exercise therapy - where CFS patients' physical activity is increased a little at a time - produced "promising results."
But wait. This is not generally thought to be a mental illness, although cognitive behavioral therapy is often used for that type of condition.
"Behavioral therapy educates patients about their illness, rather than thinking they have something that will go away with a pill. It's a way of adapting to an ill state, rather than resolving it," says allergist and immunologist James Jones, who has studied the syndrome for 20 years.
(Jones, a senior staff physician at the National Jewish Medical and Research Center in Colorado, didn't participate in the JAMA article.)
He has long been an advocate of education for patients, and acceptance that this condition, although perhaps temporary, isn't one that will go away overnight.
Information from the CDC supports that; half of patients surveyed reported recovery after five years.
But ruling out physical illness is "paramount" before even assuming that a patient has chronic fatigue, he said.
And he is candid in admitting that many doctors don't take the time to do a decent evaluation.
He said probably 50-60 percent of the 350 patients he sees a year as a consultant are misdiagnosed as having chronic fatigue.
"When we see people, the first visit takes an hour and a half. We ask about how (the illness) began, what symptoms they have, when they occur, what they do for them. One of the things I rarely ever see is a good history regarding sleep," he said.
And doctors rarely ask a patient to describe what fatigue means. Treatment without an accurate diagnosis, he said, may prevent an adequate diagnosis.
And the rush to find treatments has now outpaced knowledge of the syndrome, he warns.
"Therapy for patients appears to be evolving at a faster rate than an understanding of this (illness,)" Jones wrote in a 1999 scientific paper.
Adds the CDC, "Be wary of information that points to sure cures."
Copyright 2001 Cox News Service. All rights reserved.