Cracking The Conundrum Of Chronic Fatigue Syndrome

Sep 5, 2011
Originally published on September 6, 2011 8:07 am

Nearly three decades have passed since the debate began about a series of symptoms that have come to be known as chronic fatigue syndrome. Its cause is still unknown, but over the years, researchers have identified various brain, immune system and energy metabolism irregularities involved. Some patients describe the syndrome as feeling like an "unrelenting, unremitting flu."

Doctors say some treatments can help. Arthur Barsky, a psychiatrist at Brigham and Women's Hospital in Boston and a professor at Harvard Medical School, says patients need to change how they experience symptoms — typically pain, insomnia and anxiety. When patients adopt a more positive attitude, Barsky points out, it often translates into greater confidence and more energy.

A study published this year in the Lancet found that a form of talk therapy, as well as exercise, offered relief for some patients. Researchers from the United Kingdom looked at cognitive behavior therapy, or CBT.

In the study, over 600 patients with chronic fatigue syndrome were assigned to different treatments. All of them received medical care for symptoms like pain, insomnia or anxiety.

One group got counseled about how to pace activities. Another took part in an exercise program. And a third received the cognitive behavioral talk therapy. The therapy and the exercise group improved the most, reporting less fatigue, insomnia and anxiety.

Barsky says his patients do best when cognitive behavior therapy is also combined with gradually increased exercise. "People need to begin to push themselves in the face of their fatigue, because if you don't, you become deconditioned and you get caught in a cycle which ... makes fatigue worse," says Barsky.

But he cautions against overdoing it. People should start with mild, gentle exercise like clearing the table, doing the dishes, or taking the dog for a short walk. Then, slowly build up to longer and more frequent walks, he says.

Lucinda Bateman is a doctor at the Fatigue Consultation Clinic in Salt Lake City who specializes in chronic fatigue syndrome.

She's skeptical about the Lancet study, pointing out that patients improved only moderately, and not much more than those who were counseled about pacing themselves. Bateman suggests her patients pace themselves, and try to do only as many activities as they can manage.

She says some patients get caught in a "push and crash" cycle. When symptoms abate and they feel better, they may go all out, exercising, doing errands and socializing. But soon that level of activity often comes to a crashing end and patients can relapse dramatically, even becoming bedridden for several days or longer.

Bateman takes also issue with CBT's implication that chronic fatigue syndrome is psychosomatic. We still don't know what exactly causes the syndrome. And, like most professionals who treat patients, Bateman eagerly awaits the day when science can finally pinpoint its cause.

With additional reporting from Joanne Silberner

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Even if we don't know the cause of chronic fatigue syndrome, doctors say that some treatments can help. As NPR's Patti Neighmond reports, researchers from England recently found that talking - as well as exercise - reduced symptoms for certain patients.

PATTI NEIGHMOND: Researchers looked at cognitive behavior therapy. It's a form of psychotherapy, but it doesn't delve too deeply into the past. It's not psychoanalysis. It's all about the here and now. It teaches patients to sort of shift gears in how they view things.

Psychiatrist Arthur Barsky, with Brigham and Women's Hospital in Boston, says when it comes to chronic fatigue syndrome, that means helping patients change how they experience their symptoms.

Dr. ARTHUR BARSKY (Brigham and Women's Hospital): To try to respond to them differently; to try to act differently when the symptoms are bothering them, in ways that actually lessen the symptoms and improve their ability to function.

NEIGHMOND: For example, he says, patients often think...

Dr. BARSKY: This is never going to go away; this is only going to get worse; this could ruin my entire life.

NEIGHMOND: As opposed to...

Dr. BARSKY: I've learned to cope with things like this in the past, and I can learn to overcome it again. I've had symptoms like this before and they turned out to be nothing lethal, and so they probably are not going to be lethal this time, either.

NEIGHMOND: And when patients adopt a more positive attitude, it often translates into more confidence and more energy, says Barsky.

That's what a recent study from England found. Over 600 patients with chronic fatigue syndrome were assigned to different treatments. All of them received standard medical care for symptoms like pain, insomnia or anxiety. One group also got counseled about how to pace activities. Another took part in an exercise program. And a third received the cognitive behavioral talk therapy. The therapy and the exercise group improved the most, reporting less fatigue, less insomnia and less anxiety.

Barsky says his patients do best when cognitive behavior therapy is also combined with exercise.

Dr. BARSKY: People need to begin to push themselves in the face of their fatigue because if you don't, you become de-conditioned and you get caught in this cycle in which you do - you're physically less active, which de-conditions you, which makes the fatigue worse, which makes you cut back further on your activity. And it just cycles on itself.

NEIGHMOND: Barsky cautions patients shouldn't overdo it. They should start where they are, with mild, gentle exercise if that's all they can do.

Dr. BARSKY: Clearing the table after dinner; doing the dishes; walking up and down stairs; take the dog for a walk, for a short walk in the evening.

NEIGHMOND: And slowly build up to walking longer distances more frequently, to increase tolerance.

Dr. Lucinda Bateman is an internist in Salt Lake City who specializes in chronic fatigue syndrome. She's skeptical about the studies, pointing out that patients improved only moderately and not that much more, she says, than those who were counseled about pacing themselves.

Dr. LUCINDA BATEMAN (Internist): And the counsel I give my patients is try to do as much as you can every day that you will be able to fully recover from by the next day.

NEIGHMOND: If not, Bateman says, patients are at risk for what she calls the push and crash cycle.

Dr. BATEMAN: What they do is when the symptoms abate and they start to feel better, they think oh, I'm better, I'm better; I've got to go - I've got a lot I want to do. They'll go out and they'll sort of do as much as they can get in before it all comes to a crashing end. And then they withdraw and crash, and they may be bedridden or in their home for several days or longer.

NEIGHMOND: Bateman takes issue with cognitive behavior therapy in general. She says it implies that chronic fatigue is psychosomatic. The fact is, we just don't know what causes the syndrome, she says. And like pretty much everyone who treats patients with chronic fatigue syndrome, Bateman eagerly awaits the day when science finally pinpoints its cause.

Patti Neighmond, NPR News.

INSKEEP: And that's "Your Health" for this Monday morning.

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