Action for M.E. are attending a National Institute of Health and Care Excellence (NICE) meeting today to inform the scope of the updated NICE guideline on M.E.

The NICE guideline offers guidance, information and advice for health professionals and practitioners, and is being reviewed in light of evidence submitted to NICE by stakeholders in 2017, including Action for M.E. and other patient organisations.

The meeting is the first stage in the review process for the NICE guideline, and stakeholders have been invited to consider what topics ought to be included in the updated guidance.

Clare Ogden, Head of Communications and Policy at Action for M.E., is attending and will be highlighting the importance of including patient-reported evidence in the guideline. Currently, the guideline prioritises evidence from randomised control trials. Patient surveys have indicated that the treatments recommended in the guideline, cognitive behavioural therapy (CBT) and graded exercise therapy (GET), can worsen the symptoms of some people with M.E.

Once the scope of the new guideline has been finalised, a committee will be established which will be responsible for developing the review questions, reviewing the evidence relevant to the guideline, and drafting the proposed new guideline. Stakeholders will be consulted again on this draft before the guideline is finalised and published. NICE expect this process to be completed by October 2020.

Action for M.E. will continue engaging with NICE as the guideline is developed, and will post updates to share any information going forward. 

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