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 with virtual participation from a wide range of stakeholders as we are concerned about the lack of transparency surrounding the challenge to the guideline and ‘pause’ in publication. This has severely damaged NICE’s credibility in the ME community and future openness will be critical in achieving ‘a guideline that will have the support of people living with ME/CFS’.

We therefore look forward to receiving the following in advance, so we have plenty of time to prepare:

• Full details of the challenge to the publication of the guideline
• Details of the procedure by which others can also challenge the publication of the guideline in its current form
• Details of any expert witnesses that are being called or further evidence being gathered
• A clear plan for the steps and timescale that will be followed until publication
• Details of all stakeholders invited and the role they will play in this, both in person and via written submission
• Details of any stakeholders who are not invited to the Roundtable and how they can contribute
• The plan of action if agreement cannot be achieved
• An assurance that ongoing delay to publication will be accompanied by a warning on the current guideline that GET can cause deterioration for people with PEM, thus preventing further harm.

Yours sincerely,

Jan Russell   Chair of WAMES