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