Social support and the persistence of complaints in chronic fatigue syndrome

BACKGROUND: Several studies suggested that the surroundings of chronic fatigue syndrome (CFS) patients are of importance in the persistence of complaints. Contrary to what was expected, participation in support groups has not led to clinical improvement. The purpose of the present study was to describe social support in CFS patients as compared with other fatigued and non-fatigued groups. Further, changes in social support and the influence of social support on the course of CFS over a period of more than 1 year were studied in patients with and without treatment. METHODS: Baseline data were assessed in 270 CFS patients, 150 disease-free breast cancer patients, 151 fatigued employees on sick-leave and 108 healthy subjects using the Social Support List and Significant Others Scale. CFS patients were followed in cognitive behaviour therapy (CBT), guided support groups and natural course at 8 and 14 months. RESULTS: CFS patients and fatigued employees reported more negative interactions and insufficiency of supporting interactions than cancer patients and healthy controls. No differences in frequency of supporting interactions were found. Negative interactions decreased significantly after treatment with CBT, but did not change in support groups or natural course. In the natural course, higher fatigue severity at 8 months was predicted by more negative interactions at baseline. CONCLUSIONS: In CFS patients and fatigued employees, social support is worse than in disease-free cancer patients and healthy controls. Lack of social support was identified as a new factor in the model of perpetuating factors of fatigue severity and functional impairment in CFS.