MICHELE NORRIS, host:
There's news today about an illness that affects millions of Americans: chronic fatigue syndrome. Researchers in Britain compared different treatments for chronic fatigue, and they said two stood out: psychotherapy and carefully increasing daily exercise.
But NPR's Richard Knox reports that chronic fatigue patients and their advocates aren't entirely pleased with the study's results.
RICHARD KNOX: Patients with chronic fatigue syndrome or CFS have disabling fatigue, sleeplessness, problems with memory and concentration and other symptoms. The cause is unknown, and there's no proven treatment.
The large British study published by The Lancet tested four treatments over six months: regular visits to a specialist; counseling patients on how to recognize their limits and live within them; a type of psychotherapy called cognitive behavioral therapy, it tries to change the way patients see their symptoms and reduce their fear of overexerting themselves; and exercise therapy, patients gradually step up their physical activity.
Dr. MICHAEL SHARPE (Director, Psychological Medicine Research, University of Edinburgh): The results were quite clear. Those of the treatments where a therapist worked with the patient to help them try gradually doing more over a period of time produced not only better functioning, they actually reduced the patient's fatigue.
KNOX: That's Dr. Michael Sharpe, the senior author of the study. He says 60 percent of patients with moderate CFS substantially improved with psychotherapy and exercise versus 40 percent who only got the counseling on living within their limits.
But Sharpe expects the results to be controversial, and he understands why.
Dr. SHARPE: If you have a condition that people decry and criticize you for, saying it's not really real, it's just psychological, then if someone tells you you need a psychological treatment, it seems like rubbing it in that people don't believe they're ill.
KNOX: On this side of the Atlantic, advocates for chronic fatigue patients like Kim McCleary say that's just it. She worries about the conclusions some people will jump to. McCleary leads the Chronic Fatigue and Immune Dysfunction Syndrome Association.
KIM McCLEARY (President and CEO, CFIDS Association of America): If these things are effective, then it must mean that the condition is all in my head. If you can make it better by changing my illness beliefs, then what you're also saying to me is that I don't have a real illness or a physical illness.
KNOX: That's a notion that's plagued chronic fatigue patients for nearly 30 years, and it still colors what the public thinks about the disease.
McCleary's group agrees the British study does show cognitive behavioral and exercise therapy do produce some benefit, but it criticizes the research for not attempting to find a biological cause of the illness.
Bruce Campbell struggled for years with chronic fatigue syndrome. Now, he counsels other victims. He seems like a walking advertisement for gradually increasing exercise.
Dr. BRUCE CAMPBELL (Executive Director, CFIDS/Fibromyalgia Self-Help Program): Early on with chronic fatigue syndrome, I was able to walk maybe 20 minutes a day. And two years later, I was able to walk maybe 25 or 30 minutes a day. But then I had an idea that maybe I could do better if I walked a little bit and then sat a little bit and then walk some more. And almost immediately, I was able to double the length of my hikes.
KNOX: And recently, 13 years after he came down with chronic fatigue, he celebrated his 65th birthday by hiking the Sierra Mountains in California.
Dr. CAMPBELL: I went on a 12-day hiking trip and walked 162 miles.
KNOX: Campbell says his recovery is not typical, and he's afraid the new study will encourage patients to push beyond their limits and suffer relapses, which can be devastating.
Dr. CAMPBELL: Far and away, the bigger danger is overdoing.
KNOX: He also worries the study will raise frustrations that patients have struggled with for years.
Dr. CAMPBELL: They can't understand who I am if they don't understand how increasing my activity has led - so often, in the past - to my having to spend so much time in bed.
KNOX: But Campbell acknowledges his own experience shows that pushing the envelope in chronic fatigue can pay off.
Dr. CAMPBELL: Yes, for me, gradual expansion of activity turned out to work. So there may be some definition problems here.
KNOX: Maybe it all depends, he says, on how carefully and slowly it's done so people don't overdo it.
Richard Knox, NPR News.
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