Opinion BMJ 2025; 389 doi: https://doi.org/10.1136/bmj.r977 (Published 14 May 2025) Cite this as: BMJ 2025;389:r977

Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, write

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects around 250 000 people in the UK. Symptoms include fatigue, cognitive difficulties, pain, autonomic disturbances, disturbed sleep, and gastrointestinal upset. The National Institute for Health and Care Excellence (NICE) estimates that 25% of people with ME/CFS experience higher symptom levels and reduced function.1 These disabilities, and the patients’ belief that they won’t recover, can harm their mental wellbeing.2

Recovery is possible, but patients need help to find their path. A constructive starting point requires experienced practitioners to recognise that the evolved biological control systems responsible for maintaining safety can sometimes become dysregulated.34 This perspective offers patients a coherent explanatory model and, for some, a foundation for meaningful therapeutic progress.56

Guidance from NICE in 2021 on managing ME/CFS states that “recovery” may be only “a long period of remission” and that “many will need to adapt to living with ME/CFS.”7 For severe and very severe ME/CFS, the guidance states that patients may be in bed all day; may be unable to eat or digest; and may require a low stimulus environment in a dark, quiet room with little or no interaction because of hypersensitivity to light, sound, touch, movement, and smells.1 A government consultation with charities and patients about implementing the NICE guidance concluded that doctors must understand that people with severe symptoms need palliative care.7

Death directly from ME/CFS is unlikely. Neither somatic pathology nor specific physiological disturbance has been reliably and consistently identified.6 However, functional impairment may lead to malnutrition and dehydration—described as the cause of death of Maeve Boothby O’Neill, who died in 2021 at age 27.8 The coroner at her inquest highlighted that the NHS had no specialist units for severe ME/CFS.9 However, several specialist regional services for ME/CFS diagnose and treat mild and moderate presentations.

One specialist unit in the UK is at the Leeds National Inpatient Centre for Psychological Medicine. Some of the patients admitted have severe and complex ME/CFS. The Leeds centre delivers multidisciplinary inpatient care based on a biopsychosocial approach. This underpins much general practice in the UK, where symptoms and illness are considered not just in terms of the biology of a disease but also psychological (the influence of thoughts and emotions) and social dimensions (a person’s family, relationships, and societal beliefs).10

The Leeds unit employs highly trained and experienced staff in nursing, liaison psychiatry, occupational therapy, physiotherapy, cognitive behavioural therapy, dietetics, and pharmacy.11 Although their numbers are small, the improvements are seen across all groups of patients and are consistent. In nine of the past 10 years, everyone discharged had shown improvement, with over 50% each year reporting a major improvement, and the Care Quality Commission rated the service as “outstanding” on effectiveness and praised its holistic approach.12