[Patients' experience with treatment of chronic fatigue syndrome]

Chronic fatigue syndrome is a highly debated condition. Little is known about causes and treatment. Patients" experience is important in this context.

828 persons with chronic fatigue syndrome (ICD-10 code: G93.3) were included in the study. They were recruited through two Norwegian patient organizations (ME-association and MENiN). The participants filled in a questionnaire on their experience with various approaches to alleviate their condition.

Pacing was evaluated as useful by 96% of the participants, rest by 97%, and 96% of the participants considered complete shielding and quietness to be useful. 57% of the participants who had received help to identify and challenge negative thought patterns regarded this useful. 79% of the participants with experience from graded training regarded this to worsen their health status. Overall, the results were similar, irrelevant of the severity of the condition.

Most participants in this study evaluated pacing, rest and complete shielding and quietness to be useful. The experience of the participants indicate that cognitive behaviour therapy can be useful for some patients, but that graded training may cause deterioration of the condition in many patients. The results must, however, be interpreted with care, as the participants are not a representative sample, and we do not know the specific content of the approaches.