WAMES writes to NICE re ‘Roundtable event’

On 27th August, 10 days after publication of the ME/CFS guideline was ‘paused’, NICE made another announcement. Yet again this gave the bare minimum of information – their plan to invite stakeholders to a roundtable discussion in September ‘to better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation.

No information was given about the nature of the challenge or the people making the challenge, or the rules and regulations governing this unprecedented move.

In the media and on social media, the critics of the guideline have made it clear that:
they believe GET and CBT are the only valid evidence based interventions that can help patients
the PACE trial should be upgraded from low quality and that this could be done if the diagnostic criteria was widened.

NICE says they believe it is possible to reach an agreement. Whether that is realistic or wishful thinking remains to be seen.

It is now September, so WAMES has written to NICE to express our commitment to continuing to work towards publication of the guideline.

Dear Prof Leng, Mr Chrisp and Ms Stafford,
As a stakeholder in the ME/CFS NICE guideline revision process, and a charity working with the estimated 13,000 people with ME in Wales, we confirm our interest in being part of the Roundtable event. WAMES supports the publication of the guideline as soon as possible, as it was developed by following a search for best evidence and represents years of hard work and emotional investment from all involved.
We hope this will be an inclusive event…

WAMES (Working for ME in Wales) | Welsh Association of ME & CFS Support
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