NICE roundtable agenda


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.

A further document adds to the above information: Workshop notes:

ME/CFS Summary of issues

The following list is a summary of key themes that have been raised by stakeholders
regarding the content of the pre-publication version of the ME/CFS guideline.

  1. Diagnosis – Questions have been raised regarding the diagnostic criteria that
    the committee have recommended.
  2. Children and young people – There is concern that the recommendation potentially create risks for children and young people with ME/CFS.
  3. Graded Exercise Therapy (GET) – There are questions about the
    recommendation not to offer programmes that use fixed incremental
    increases in physical activity or exercise, for example GET. In particular the
    definition of GET, that positive evidence for GET has been downgraded, and
    removing GET as a treatment option may lead to a reduction in services
  4. Cognitive behavioural therapy (CBT) – There are questions about the place
    of CBT in individualised management. In particular that there is positive
    evidence which has been downgraded, and that the guideline downplays the
    effectiveness of CBT.
  5. Methodological approach – There are questions about the approach taken
    to the evidence, with suggestions that studies have been inappropriately
    excluded or downgraded.

see also

NICE’s briefing to DHSC on 17 August, the day before the guideline was due to be published. Obtained via FOI

Non-disclosure order for NICE 18 Oct Roundtable participants

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