#MEAction UK shares the dismay and confusion of many in the ME community about the decision by NICE to pause the publication of the ME/CFS guideline at the very last minute.  Our volunteers have been working hard to gather information and exert pressure on NICE.  We wanted to let the ME community know that #MEAction UK have taken up an invitation to attend the NICE roundtable on 18th October, to discuss the issues raised that led to the pause in publication.

We have thought long and hard about the best position to take in these unprecedented circumstances and decided that we need to be at the roundtable to counter any misinformation and represent the grassroots community.  Janet Sylvester will attend the roundtable on behalf of #MEAction UK.  Janet has been volunteering with #MEAction UK and #MEAction Scotland since 2017 and her daughter, Emma, has had ME for 9 years.

NICE have been meeting with all invited organisations on a one-to-one basis, in order to understand the concerns different organisations have. They will use the information gathered to collate an agenda for the roundtable. This will be sent to invitees, along with a broad description of the issues raised prior to the roundtable. 

A small group of volunteers have taken part in a pre-meeting call with NICE.  We objected in the strongest terms to the delay in the publication of the guideline and emphasised that the guideline must be published without any changes. We discussed the ongoing harm caused by graded exercise therapy, the lack of transparency of the current process and the uncertainty caused by the pause in publication of an evidence based guideline that has already been delayed multiple times. 

We also raised, once again,  our concern about Dame Carol Black being appointed chair of the roundtable. 

According to NICE, minutes of the discussion will be published, however the representative we met with couldn’t give any further information as to how extensive these minutes would be. 

We have since been assured in writing that this will not be a decision-making forum and any decisions will be made by the NICE guideline executive team after the roundtable. No further information on timescales for decisions was given, but the representative we spoke with hoped we would be given more information at the end of the roundtable. We again emphasised our difficulty engaging in a process that is apparently being made up as we go along. 

We are now waiting to see what the agenda and discussion points for the roundtable will be and, where possible within the confidentiality agreements we have signed, will continue to update our community. 

n the meantime, please keep signing and sharing the petition to #PublishThatGuideline: https://www.change.org/p/the-national-institute-for-health-and-care-excellence-publish-the-nice-me-cfs-guideline-now