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Action for M.E. to NICE: guideline must be reviewed

July 10, 2017

Action for M.E. will respond to a National Institute of Health and Care Excellence (NICE) consultation to say that the clinical guideline for M.E. must be reviewed in full.

Having considered recent published research with a view to potentially reviewing its guideline CFS/M.E.: diagnosis and management, NICE has decided that there is insufficient evidence to do so. NICE is now asking registered stakeholders for their views on this, with their consultation on the decision running from today until Friday 21 July.

As a registered stakeholder, Action for M.E. will respond to the proposal highlighting the experiences of people with M.E.

We will also argue that:

  • the guideline undergo a full and immediate review
  • this full review must include a thorough consideration of significant evidence on CBT and GET
  • stakeholder organisations and the patient community be included in the consultation to ensure that the guideline recognises and takes into account the voices of people with M.E.

Considering the guideline’s current recommendations on cognitive behaviour therapy (CBT) and graded exercise therapy (GET), NICE notes that “controversy surrounds the PACE trial.” It concludes that in a surveillance review of current evidence, “most studies generally show better outcomes with CBT and GET.” NICE also notes that PACE data analysed according to the original definition of recovery “found recovery rates with CBT and GET to be less than in reports published by the trial investigators, and not significantly different from control.”

NICE is also, as part of this consultation, asking for feedback on a proposal to remove the NICE guideline from its static list. While this would ensure it is reviewed at two-year intervals, we believe it does not sufficiently recognise the growing body of evidence that challenges the current recommendations of the guideline, and that action is needed now.

Action for M.E. will discuss the consultation with other M.E. charities at tomorrow’s Forward M.E. meeting, including the M.E. Association, who have set up a petition calling for a full review of the guideline. At the meeting, we will discuss how we can work collaboratively to give the most robust response possible to the consultation.