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NICE open consultation on updating ME guidelines

For Chronic fatigue syndrome

The National Institute for Health and Care Excellence (NICE) have started the consultation phase to update the guidelines for the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome.

The update will be published in 2020 and will refresh the previous guidelines published in 2007.

Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness.

CFS is also known as ME, which stands for myalgic encephalomyelitis. Many people refer to the condition as CFS/ME.

CFS/ME can affect anyone, including children. It's more common in women, and tends to develop between your mid-20s and mid-40s.

NICE need evidence from the areas listed in the main article.

Studies that evaluate:
Management strategies that are adopted while someone is being assessed for a diagnosis of ME/CFS.
Methods of monitoring and/or reviewing people with a diagnosis of ME/CFS
NICE are looking for trials that compare different strategies or different methods of monitoring and review. Systematic reviews, randomised controlled trials, non- randomised trials that are prospective or retrospective cohort studies will be considered for inclusion in the guideline.

NICE would like studies that report measurable outcomes on:
  • Mortality
  • Quality of life
  • Fatigue /fatiguability
  • Physical functioning
  • Cognitive function
  • Psychological status
  • Pain
  • Sleep quality
  • Treatment-related adverse effects
  • Activity levels
  • Return to school or work
  • Exercise performance measures.
  • Care needs
  • Impact on families and carers
NICE are also seeking evidence on the experience of people who have had interventions for ME/CFS.

They are looking for evidence that explores and evaluates people’s experience of interventions for ME/CFS. Qualitative studies evaluating focus groups and interviews and surveys will be considered for inclusion in the guideline.

NICE are particularly interested in information promoting equality of opportunity relating to age, disability, gender, gender identity, ethnicity, religion and belief, sexual orientation or socio-economic status.

NHS website for chronic fatigue syndrome
Contains public sector information licensed under the Open Government Licence v3.0.
Accessed 25/09/19
Links available in External Resources

© NICE [2019]

Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. In development [GID-NG10091]. Expected publication date: 14 October 2020 
Available from: See Link below. All rights reserved. Subject to Notice of rights
NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication.

The information provided by NICE was accurate at the time this article was issued.

NICE information on updating of ME guidelines

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