Mapping the Symptom Profile and Burden of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS): Insights from the TIMES Survey.

Objective: To characterise the symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Method: 1028 adults with ME/CFS completed The Index of ME Symptoms (TIMES) online. Raw ordinal data were Rasch transformed into interval data so parametric statistics were used. Results: Mean TIMES score was 57.2/100 (sd 5.4) indicating a severe symptom burden affecting multiple body systems. The correlations between symptom burden, age and duration were negligible, and moderate with ME/CFS severity. Women had a greater symptom burden than men. All participants experienced fatigue, neurological symptoms and dysautonomia. The mean Fatigue Scale score was severe (67.7 (sd 19.9)) and moderate for the Neurological Scale (mean 45.11 (sd 9.45)) and Dysautonomia Scale (43.98 (sd 8.42)). Over 90% experienced cognitive, pain, motor-sensory, sleep, cardio-respiratory, cranial nerve and gastro-intestinal symptoms to some degree. They were mild-moderately troublesome overall, except cognitive symptoms which were severe. Conclusions. ME/CFS causes a heavy multi-system symptom burden. Although most individual symptoms were mild-moderately troublesome, the cumulative effect was severe or very severe. Fatigue was the most common and troublesome problem followed by cognitive symptoms, sleep disturbance and pain. Women experienced a greater symptom burden than men, and there was a moderate relationship between symptom burden and disease severity.