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NICE committee to review special #MECFS issue of Journal of Health Psychology

Jonathan Edwards


I suspect Coyne organized this whole thing from the beginning after he saw that PACE authors were unwilling to admit any mistakes. The timing is surely a lucky coincidence though!

I think this may be a slight over interpretation of the situation. The NICE committee will have a copy. That may be all we can say.

I think Keith organised the whole thing actually! Something to rightly be proud of.

charles shepherd

Senior Member
@charles shepherd David Tuller rported that the Countess of Mar had a negative reply to the FoI on who makes up the NICE committee.

Assuming you get the same reply, does the MEA intend to appeal & go to the Information Commissioner's Office (ICO) if necessary?

Below is the negative response from NICE to the MEA request for details of membership of the expert group that concluded that there is no need to update the NICE guideline on ME/CFS

I suspect that the same line will now be taken with the FoI request for details of the membership of this group….

I'm not sure how we will proceed at this point - I need to speak to the person who has submitted the FoI request

The Countess of Mar tabled a PQ in the House of Lords

The MEA wrote to NICE and politely asked for the names

The FoI is the third part of this investigation!


Dear Dr Shepherd,

Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (CG53).

In reaching our provisional decision the surveillance review team undertook extensive searches to identify any new primary and secondary studies, including any economic studies. The focus is on the scope of the published guideline, but any additional areas or changes in practice that are identified during the process are also considered, if they fall within the referral of the published guideline. A literature search is conducted across a range of sources, selected according to their relevance to the topic and are based on those used in the published guideline.

We can’t provide the names of the surveillance team but it is made up of a Technical Analyst, Technical Adviser, Clinical Adviser and the Associate Director – Surveillance.

Topic experts, including members of the original guideline committee, are asked for their opinion, in their personal capacity, on the relevance of the published guideline, recent developments in the topic area and their knowledge of any new important evidence since publication of the guideline. Guideline committees are responsible for the development of guidelines and we publish the membership of them. We do not routinely publish the identities of topic experts because, while they may express an opinion, they are not part of the decision making body.

The review proposal is made by the review team and the decision on whether to update the guideline is made by our Guidance Executive. The Guidance Executive considers and signs off guidance and implementation for publication. It meets every week and is made up of NICE executive directors, guidance centre directors and the communications director. Its current membership can be found on the NICE website.

I hope this information has answered your question.

Kind regards,


Alexander Smith

Communications Executive (Corporate Communications)

National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom


This is extremely important situation for all ME community in all EU and rest of continents. If also UK changes the guidelines, we will move forward much faster.
So any legal / formal resource we can take, will go long ways. Let us know how we can assist. And what can be done to keep pressuring. I think after reading all this, is that the ME is under physiologist instead of a Physical department. So you know where the effort has to go to (move ME to neuroinmune diseases).