Behavioral health

Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) are commonly thought to be the only effective treatments for CFS/ME, mostly due to the influence of two meta-analyses of the treatment literature. (In actuality, these were the only two effective modalities that had been studied extensively, but other treatments may be helpful). Unfortunately, many practitioners concluded erroneously that psychiatric care and vigorous exercise were "the cure" for CFS/ME. Dr. Ellie Stein, a psychiatrist from Calgary, Canada, eloquently addressed this in her introductory remarks.

Stein pointed out that CFS/ME and FM are chronic, heterogeneous conditions that are unlikely to respond to any single approach. It is understandable that both have high rates of psychiatric co-morbidity (such as depressed mood and anxiety), yet neither is considered a psychiatric disorder. Since no medication is known to cure CFS/ME or FM, behavioral interventions are a reasonable consideration.

The earliest CBT/GET programs were based on the false assumptions that avoidance of activity, illness severity, increased attention to symptoms, and autonomic arousal ("hyper," or hyper-excitable behavior) were causing or perpetuating symptoms, when in actuality they were the result of the illness. Of seven controlled studies using early CBT techniques, only 4 were positive and most were inconclusive or poorly done.

Five studies of graded exercise in CFS/ME showed a modest decrease in fatigue, but improvement in pain, sleep, autonomic, immune, and cognitive symptoms have not been shown.

It has long been suspected that persons with "pure FM" (i.e., less fatigue and cognitive dysfunction) can exert more easily, and several studies have shown temporary improvement in pain and quality of life, but many effects have worn off within a year. CBT has not been proven helpful in "pure FM."

No study has measured the effect of CBT or exercise in the severely ill.

Stein points out that CBT and GET don't work well because many patients do not have dysfunctional illness beliefs, many are already functioning at maximum activity levels, and the exercise makes some people worse! She recommends "The Stanford Model," a program for persons with chronic illness that is based on education, encouragement, and shared responsibility between patient and professional. The Stanford Model addresses low level exercise, cognitive symptom management, nutrition, energy and sleep management, the use of medication and community resources, managing emotions, and dealing with health care professionals. This program has proven success in MS, rheumatoid arthritis, and other chronic illnesses. Dr. Pat Fennell has also developed a proprietary chronic illness approach, based on her proposed Four Phases of Coping in CFS/ME. This model encourages patients to collect data, take control of symptoms, grieve losses, and search for a new identity.

Comment: Dr. Bruce Campbell's CFIDS and FM Self Help Book and his online CFIDS and FM Self Help Course are based on the Stanford Model, and highly recommended! Patricia Fennell's books are available from Barnes & Noble and other booksellers.

Stein went on to point out that self-efficacy (that is, the perceived ability to control illness) and acceptance of illness are both associated with positive physical and psychological outcomes. Therefore, CBT and GET are the most studied behavioral interventions, but results are short-lived and many do not benefit. Stein urges alternative approaches such as the Stanford Model that are more patient friendly and have a good record of success.

Professor Fred Friedberg (Stony Brook University) presented a short course on CFS/ME and FM to his students, and found that even a brief exposure to factual information about these illnesses led to more favorable attitudes by fourth-year medical students. Two points that students endorsed strongly were, "It is important for physicians to understand CFS," and "Patients are [NOT] to blame for their illness."