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Forward-ME on NICE guideline roundtable

August 31, 2021

Last week, the National Institute of Health and Care Excellence (NICE) announced that, following the pause to the publication of it guideline on diagnosing and managing M.E./CFS, it will host a roundtable to "better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation [...] The meeting, which will be held in September 2021, will have an independent chair and will include representatives from patient organisations and charities, relevant professional societies and from NHS England and NHS Improvement, NICE and the guideline committee."

Forward-ME, the group bringing together most of the M.E. charities in the UK including Action for M.E., has now had a number of direct communications with NICE regarding the delay, in which we have shared the concerns of the wider M.E. community.

The guideline development process was robust and there is broad recognition that it stands up to scrutiny. It is clear that any guideline produced by this method should be published in full, and we are committed to achieving that. Forward-ME does recognise that the support of all stakeholders would benefit the roll-out of the new guideline, and we understand the challenges that NICE have in achieving this.

While we remain cautious about the situation, we are confident that any roundtable event will be conducted in good faith, and are reassured by the discussions we have had so far. If the roundtable event does not reach the desired outcome with full publication of the new guideline, Forward-ME and its members will take every possible step to ensure the final guideline in their current form are published in full. Plans are in development to ensure we can act robustly if needed. People with M.E. deserve better, and we will continue to work together to achieve that.