"I could not lift my arm holding the fork...". Living with chronic fatigue syndrome

Abstract

Objectives: To explore and describe symptoms and their consequences for patients suffering from chronic fatigue syndrome (CFS).

Design: Qualitative data from a group interview, written answers to a questionnaire and a follow-up meeting analysed in accordance with Giorgi's phenomenological approach.

Subjects: Purposeful sample of 10 women and 2 men of various ages recruited from the local self-help patient organisation.

Main outcome measures: Descriptions reflecting the nature, extent and consequences of symptoms regarded as the most substantial by the informants across the group.

Results: Extreme exhaustion exceeding the nature of everyday weariness was reported as the worst symptom. The informants perceived reduced muscular strength, continuous weakness and recurrent pain, problems related to memory and concentration, sleep disturbances and excessive sensitivity towards smell, light and sound. Learning abilities had deteriorated, and housework, conversation, reading and watching TV were characterised as exhausting, leading to an unpredictability of everyday life-disturbing social relations.

Conclusion: The extent and nature of symptoms suggest that CSF is an essentially different and far more serious condition than the strains of everyday life. Our findings suggest immunological processes affecting the neuromuscular and central neural system comparable to the effects of cytostatic medication.