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This paper reports the experiences of a group of 19 severely incapacitated CFS patients on a multi-faceted rehabilitation program administered at a London hospital. The program included a low-dose sedative antidepressant at night for sleep, an individualized, graded activity program, diet for weight loss, cognitive behavior therapy or occupational therapy, relaxation therapy, biofeedback, supportive counseling, and extensive family meetings and care planning before discharge. The researchers noted that previous trials supporting cognitive behavior therapy and graded exercise used patients without extreme disability. For this study, 13 of the patients were either bed-bound or wheelchair dependent outside their homes. Seventeen patients improved by discharge. The 14 who were followed up a year later all had maintained or exceeded their improvement. The two patients who did not improve by discharge were the same or worse a year later. The researchers report factors that appeared to influence outcome positively were strong “motivation to change” and a supportive network of caregivers/relatives. Treatments that seemed most useful were the graded exercise/activity program with negotiated weekly goal setting, pharmacological treatment of psychiatric disorders, and family/partner meetings. On the other hand, a “strong belief in the physical etiology of the illness” was among factors that hindered improvement. They note that a controlled trial is needed to confirm the efficacy of this treatment. The number of patients was small and the functional assessment was not blind. They also noted that no patients regarded themselves as cured.
The Chronicle asked Dr. Peter White, the corresponding author, to comment on a number of potential criticisms to this paper, which he described as essentially an “audit” of the hospital’s treatment experience with CFS. With regard to the references to “motivation to change” and the patients belief that the illness was physical, Dr. White noted those factors have been found to be significant in previous studies. “The motivation seemed to us to be related to willingness to explore the possibilities of trying new approaches and new life experiences and having an open mind to all possible ways of treatment, including the psychological treatments as much as the physical ones.” The Chronicle asked whether the study might have been inadvertently biased in favor of psychological treatments by selecting patients who actually had comorbid psychiatric conditions. Dr. White responded: “This is a fair criticism, although there is good evidence that the more ill you are with CFS, the more likely you are to suffer from psychiatric illnesses, which is hardly surprising given the nature of the illness and its consequent disability.” He noted that the Oxford criteria, which were used in diagnosing subjects in the study, do exclude people with severe psychiatric illness.
Essame, C.S., Phelan, S., Aggett, P., and White, P.D. (1998). Pilot study of a multidisciplinary inpatient rehabilitation of severely incapacitated patients with the chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome, 4:2, 3–22.