The ME Association funded a study led by Prof Sarah Tyson from the University of Manchester, to develop a clinical assessment toolkit in collaboration with people with ME and clinicians in NHS ME/CFS specialist services.
As part of Phase I of the project, Prof Tyson and team conducted an online survey – The Index of ME Symptoms (TIMES) – and the result from 1028 adults with ME/CFS helped produce this preprint paper ‘Mapping the Symptom Profile and Burden of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS): Insights from the TIMES Survey‘ (Tyson & Fleming 2026)
Currently, the ME Association is funding Phase II – The ME Association Clinical Assessment Toolkit Dissemination and Implementation – which is an 18 month study that commenced August 2025.
Abstract
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.
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Comments from Prof Tyson
It is great to see this paper in print. It describes, in detail, the symptoms that people with ME experience which, surprisingly has not been published before. It shows that ME/CFS causes a heavy multi-system symptom burden, illustrating that ME ‘is not just fatigue' and that ‘chronic fatigue syndrome' is a misnomer that fails to capture the breadth of the issues that people with ME live with.
As well as validating people with ME's experience, it provides objective information regarding the difficulties people face which will inform future research and service developments.