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NICE round table agenda now published

October 13, 2021

On Monday, Action for M.E. will attend a roundtable meeting hosted by the National Institute for Health and Care Excellence (NICE). NICE has invited representatives from a range of patient and professional organisations to discuss the concerns that were raised about the guideline for M.E./CFS due to be published in August, but now paused.

Following requests from charities including Action for M.E., NICE has now published the agenda for the meeting, as follows:

  1. Introduction and rules of the meeting – Dame Carol Black
  2. Guideline production at NICE – Dr Paul Crisp, Director of the Centre for guidelines at NICE
  3. Aim of the Myalgic Encephalomyelitis: diagnosis and management guideline – Dr Peter Barry, chair of the ME/CFS guideline committee
  4. Discussion of issues raised: diagnosis, graded exercise therapy (GET), children and young people, and cognitive behaviour therapy
  5. Summary – Dame Carol Black

Professor Gillian Leng, NICE Chief Executive, says:

“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.”

Some people have also contacted us to share their concerns about the impartiality of the Chair of the round table, Dame Carol Black. There has been communication with NICE on this matter; now we are focusing on getting the guideline published as soon as possible, and working as part of Forward-ME to achieve this.

House of Lords

Yesterday, oral questions were tabled in the House of Lords to discuss the delay in publishing the planned guideline.

Baroness Thornton led the questions with a quote from one of her constituents, the parent of a child now bedbound as a result of GET, a story which will resonate with some within the M.E. community: “No treatment is better than harmful treatment.”

There was also concerns raised that the GET model would be repeated with patients experiencing Long Covid. Lord Kamall said:

We are making huge progress on the syndrome called Long Covid, and I note the encouraging progress that NICE is making on guidance for post-Covid syndrome. But does the Minister accept that this shines a clear spotlight on how far behind and wrongheaded we are with the diagnosis and management of M.E. and CFS? In particular, does he accept that, in the interests of health equality and national productivity, we need to rethink the way that people are got back on their feet after they have been hit by these horrible viruses?

You can read the full transcript from the session in Hansard.