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People with M.E. must be heard, says NICE committee

May 29, 2018

Action for M.E. joined stakeholders from patient groups, charities, and professional bodies to take part in Friday's workshop on the scope of the National Institute of Health and Care Excellence (NICE) guideline on M.E/CFS.

The event was part of NICE’s ongoing process to revise its M.E./CFS guideline, with a focus on topics and themes that should be considered for inclusion, rather than the content itself. These included the need for:

  • specific consideration to be given to children, young people and adults who are severely affected
  • objective outcome measures to be prioritised by the committee when reviewing evidence about what to include
  • a section about prevention, risk factors and deterioration to be included in the guideline scope.

“Points raised in my particular discussion group included the clear need for the guideline to reflect our current understanding regarding the aetiology of M.E. – and be clear on what M.E. is not, eg. deconditioning, or Medically Unexplained Symptoms,” says Clare Ogden, Head of Communications and Engagement, Action for M.E., who attended the workshop. “We also asked that the consultation period on the draft scope be extended from four weeks, so that everyone with M.E. has the chance to have a say, including those severely affected.”

Those attending the workshop were introduced to the Chair of the guideline development committee for M.E./CFS, Dr Peter Barry, and the Vice-Chair, Baroness Ilora Finlay. Dr Barry, who chairs two other guideline committees, said he was not an expert in M.E./CFS, and that coming to the topic without any preconceptions would be helpful. He also stressed the importance of recruiting the right professionals and lay members – or “experts by experience,” the term preferred by Baroness Finlay – to the committee.

“There was a clear commitment from Dr Barry to ensure that the voices of people directly affected by M.E. are not just heard, but listened to, as part of guideline development,” says Clare. “One of the key points raised at my discussion table was the need for committee members to be recruited on the basis of their commitment and integrity – not their job title. It was also suggested that an expert in internal medicine and/or clinical or molecular science might be useful.”

The NICE team managing the guideline revision will now produce a draft scope based on discussions at the workshop, and consult on this with registered stakeholders from Thursday 21 June; recruitment for committee members will begin at the same time. Action for M.E. will be launching a survey to inform our response to this consultation, ensuring it is led by the views and experience of people affected by M.E.