NICE releases further details of ME/CFS roundtable meeting.

Ahead of the roundtable meeting on 18 October, NICE has today (12 October 2021) released details of the agenda and how the meeting will be run.

Publication of the NICE guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) was paused after several professional organisations contacted NICE to say they had serious concerns about some aspects of the guideline.

NICE has invited representatives from a range of patient and professional organisations to discuss the concerns that were raised.

The discussion will be chaired by Dame Carol Black, who is independent from NICE and from the guideline development process. She will chair the discussion only and no decisions will be made at the meeting.

Following the meeting, minutes will be available and NICE aims to reach a swift decision on the future publication of the guideline.

Professor Gillian Leng, NICE chief executive, said: “We understand that patient groups are anxious to see the guideline published as soon as possible. We are holding this roundtable to explain how the guideline was developed and the rationale behind the recommendations made and to hear and understand the concerns that have been raised. We hope there will be an open and honest discussion about these concerns to ensure that the final guideline will be effectively implemented across the system.”

The agenda for the meeting is as follows:

  1. Introduction and rules of the meeting – Dame Carol Black
  2. Guideline production at NICE – Dr Paul Chrisp, director of the Centre for Guidelines at NICE
  3. Aim of the Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management guideline – Dr Peter Barry, chair of the ME/CFS guideline committee
  4. Discussion of issues raised: diagnosis, graded exercise therapy, children and young people, and cognitive behaviour therapy.
  5. Summary – Dame Carol Black.

We hope there will be an open and honest discussion to ensure that the final guideline will be effectively implemented across the system.

Professor Gillian Leng, NICE chief executive