Mind-body: Inside chronic fatigue
February 23rd, 2011
01:54 PM ET

Mind-body: Inside chronic fatigue

Dr. Charles Raison, CNNHealth's Mental Health expert and an associate professor of psychiatry and behavioral sciences at Emory University, writes regularly on the mind-body connection for better health.

Every Wednesday afternoon for the last 10 years I’ve slung a government ID badge around my neck and walked up to the Centers for Disease Control and Prevention, where I set aside my identity as a psychiatrist who studies meditation and take on the role of guest researcher in a group of scientists charged by Congress with studying chronic fatigue syndrome, or CFS.

If ever there was a condition in which the mind and body give rise to disease and acrimony it is CFS. Everyone involved in the disorder is angry. Patients are mad because they are catastrophically disabled by a condition for which no one can find a convincing cause. Researchers are mad because when their findings suggest that CFS has a strong emotional/mental component, patients and their advocacy groups get even madder, reading in these findings everything from government conspiracy to the simple insult that their illness is “all in their head.”

Into this fray comes the largest and most definitive study of how to treat CFS ever done, published last week in the journal Lancet. As one who works in the field I find its results important, hopeful and disappointing. Still, for anyone who struggles with chronic exhaustion, pain or other physical symptoms for which doctors can’t find a cause, the study provides clear guidance about how to best proceed in dealing with your symptoms.

The study randomly assigned 641 people with CFS to receive cognitive behavioral therapy, also known as CBT, in which subjects were guided in thought processes and behaviors including fear of symptoms and helped to succeed in activities;   graded exercise training, in which the participants gradually increased their activity levels to achieve specific goals; adaptive pacing therapy,  in which activity is paced specifically to reduce fatigue, achieve specific goals and provide the best environment for natural recovery; or medical care by a specialist in chronic fatigue syndrome.

A year later all the subjects were evaluated to see which of these treatments had the best long-term effect. More important than the details of the treatments is the fact that the graded exercise training and CBT gently pushed patients to increase their levels of activity and functioning, whereas the adaptive pacing therapy focused on helping the CFS patients live better within the limits of their illness by restricting their activities so as not to become overly exhausted.

The findings were clear. The patients who challenged themselves to improve their condition within the context of CBT or graded exercise got much better on the whole than did those who accepted their disabled fate and tried to live with it within the guidelines of the adaptive pacing therapy. If you’ve got CFS you’ve got to fight for your health by pushing against your pain and exhaustion to get in better mental and physical shape.

But before proceeding, an important caveat. This does not mean that if you have CFS, fibromyalgia or a related condition you should hop up and train for a marathon. A hallmark of both CBT and graded exercise is that they increase activity gradually and require close monitoring to ensure success. These interventions require time and patience and can be completely destroyed by the types of over-eagerness that lead to disease relapse.

So the good news is that even though we don’t understand what causes CFS, it can be treated with behavioral interventions that anyone with the illness can, at least in theory, avail themselves of. This is a cause for some hope.

But there is bad news on at least two fronts. First, despite all the hoopla this study has gotten in the press recently, none of the treatments worked very well. In fact, only one out of three patients improved with either CBT or graded exercise. This means that the majority of people did not improve, despite all their time and effort.
The second piece of bad news derives directly from the first, and that is the fact that the best treatments we have for CFS and related conditions are completely non-specific, which is probably we they don’t work so well. After all, increasing our sense of mental control through CBT and our physical fitness through graded exercise would probably help most of us. Compare this to an antibiotic. If you are well an antibiotic does nothing. If you are in mortal agony from a bacterial infection it saves your life.

What’s the difference between an antibiotic and the treatments studied for CFS? Antibiotics strike directly at the cause of the disease in question. That is why they are so specific and so powerful.

Reading the study I was, in the end, left with a sense of solidarity with patients suffering with CFS and other devastating conditions without a known cause. When you’re sick you’ll take an aspirin if that’s all you’ve got, but you long nonetheless for a treatment that cures the problem. The search for such cures is one of the great challenges facing mind-body medicine in the 21st century.

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