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NICE guidelines on CFS/M.E. to be reviewed

September 20, 2017

The National Institute for Health and Care Excellence (NICE) has decided to review its clinical guideline on M.E. following consultation with M.E. charities and other stakeholders, including Action for M.E. You can read all the stakeholder responses on the NICE website.

In a statement released today, NICE said: “After considering all the evidence and views of topic experts, we decided that a full update with modified scope is necessary for this guideline.”

This will entail following the guideline development process set out in its Developing NICE guidelines manual, including consulting on a draft scope for the guideline, and then consulting on the content of the guideline itself. It is not yet clear when this process, likely to take around two years, will begin.

NICE had originally proposed not updating the guideline, which recommends that patients are offered CBT and GET, based on their surveillance review of evidence published since 2007. Action for M.E. responded by telling NICE that the guideline CFS/M.E.: diagnosis and management must be reviewed in full and updated. 

We are thrilled to hear that the evidence submitted by us and other advocates has been taken into consideration, and look forward to not only contributing to this update, but also ensuring that people with lived experience of M.E. take a central role in developing new guidance.