NICE will publish the guideline following a meeting of its Guidance Executive next week.

October 20, 2021

NICE has today (20 October 2021) announced the next steps for publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).

Today’s announcement follows a roundtable meeting held earlier this week involving representatives from a range of patient and professional organisations, to discuss concerns raised about some aspects of the guideline that had led to the publication of the guideline being paused.   

“We would like to thank all those who took part in the meeting earlier this week for their contributions to what was an extremely open and positive discussion.

“During the meeting we had a constructive conversation about all the key issues that had been raised – those concerning the criteria for diagnosing ME/CFS, the decision not to recommend graded exercise therapy, the role of CBT, and the particular challenges of treating children and young people with the condition, as well as the approach taken to identifying and considering the evidence.

“We are now confident that the guideline can be effectively implemented across the system and we will discuss the input from the meeting at our Guidance Executive next week with a view to publication of the guideline.”   

Professor Gillian Leng, NICE chief executive

This is a very welcome and rapid statement from NICE following what I felt was an extremely constructive roundtable meeting on Monday with representatives from the Royal Colleges.

The ME patient community can now look forward to publication and implementation of the new NICE guideline on ME/CFS and all the recommendations it contains.

Dr Charles Shepherd
Hon Medical Adviser, MEA
Former member of the NICE guideline development committee

See statement on the NICE website

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