Yesterday, the ME Association issued a brief statement in respect of the NICE CFS/ME guideline. Dr Charles Shepherd [MEA Medical advisor] also submitted a response to the BMJ’s Editorial and Review (published Friday 31 August) in which the MEA describes the NICE guidelines as being “unfit for purpose”. A detailed statement on the MEA’s position on the guideline is currently being drafted and will be published on the ME Association website next week.
You can read all Rapid Responses to the BMJ NICE CFS/ME Editorial and Review, including Dr Shepherd’s response, here
This initial response from the MEA that they consider the guidelines “unfit for purpose” is welcomed (compare Press releases from AYME and AFME) but has the MEA done any media work in the last two weeks vis a vis its concerns about NICE other than this response from Dr Shepherd via the eBMJ Rapid Responses pages?
Jill Moss of AYME, George Armstrong, co-chair of AfME and Sir Peter Spencer, CEO of AfME have co-authored the NICE Editorial in the BMJ with Peter Denton White (Barts CFS Clinic) and Maurice Murphy (Barts).
Because access to most material on the BMJ site now requires a paid subscription (£40 per annum or pay by article for temporary access) the majority of the ME community cannot actually read this Editorial or the Review in full – only the first 150 words.
It is intensely frustrating that the ME community cannot read what UK ME charities are publishing and cannot respond with the benefit of having sight of a full copy of this BMJ Editorial which two UK ME charities have co-authored.