Guidance
This guideline covers diagnosing and managing myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) in children, young people and adults. It aims to improve awareness and understanding about ME/CFS and when to suspect it, so that people are diagnosed earlier. It includes recommendations on diagnosis, assessment and care planning, safeguarding, access to care and managing ME/CFS and its symptoms.
These recommendations were developed based on evidence reviewed before the COVID-19 pandemic. We have not reviewed evidence on the effects of COVID-19, so it should not be assumed that these recommendations apply to people diagnosed with post-COVID-19 syndrome. NICE has produced a guideline on managing the long-term effects of COVID-19.
Last reviewed: 29 October 2021
This guideline updates and replaces NICE guideline CG53 (published August 2007).
Next review: This guideline will be reviewed if there is new evidence that is likely to change the recommendations.
Recommendations
This guideline includes recommendations on:
- suspecting ME/CFS and diagnosis
- information and support, including advice when ME/CFS is suspected
- assessment and care and support planning
- safeguarding
- access to care and support
- managing ME/CFS
- symptom management
- flare-ups and relapse
- care for people with severe or very severe ME/CFS
Who is it for?
- Health and social care professionals, including those working or providing input into educational and occupational health services
- Commissioners
- People with suspected or diagnosed ME/CFS, their families and carers and the public
Guideline development process
How we develop NICE guidelines
This guideline was commissioned by NICE and developed at the National Guideline Centre which is hosted by the Royal College of Physicians.
Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.