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This post will link threads for members to discuss sections of the guideline in preparation for the S4ME submission. Section 1.1 Principles of care for people with ME/CFS pages 4-8 Sections 1.2 Suspecting ME/CFS; 1.3 Advice for people with suspected ME/CFS; 1.4 Diagnosis pages 8-11 Section...

Here's the link to the draft guideline and associated documents: Draft guideline document https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline Also Evidence review A - Information for people with ME/ CFS Evidence review B - Information for health and social care...

Earlier this week we sent this letter to Dr Karla Soares-Weiser, the new editor of Cochrane, who in this article, https://www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome, has promised Dear Dr Soares-Weiser, re: Publication of Cochrane Review...

Added October 2021 A member noted in September 2019: "Sometimes when I'm in a crash (either due to overexertion, or to a different, unidentified factor), I experience an unpleasant taste in my mouth. This makes water taste rather unpleasant. It's weird. Does anyone else get this?"

We had a further response on this and I think its also useful to look at the response we had to taking the first letter to the NICE complaints review process which is here...

We took this to a stage 2 review and received a response which basically says they followed due process which I think is all their complaints procedure looks at.

Reply from Peter Barry

This is a letter we sent from S4ME to NICE as discussed in a voting thread for those members who have posted enough to have voting rights. Sorry I forgot to post it here earlier

Response from NICE Dear Sir/Madam Thank you for your recent email to the National Institute for Health and Care Excellence (NICE), in which you express concern about the membership of our ME/CFS guideline committee. It is important that our guideline committees have the experience and...

Response from Peter Barry Dear Members of Science for ME, Thank you for your email. I appreciate your concerns and am grateful to you for bringing them to my attention. All members of the Guideline Committee have conflicts of interest, and these will be declared and dealt with in line with...

This is a letter we sent from S4ME to NICE as discussed in a voting thread for those members who have posted enough to have voting rights. We are posting here so that it and the responses are available publicly. To: Dr Peter Barry Chair, NICE ME/CFS Guideline committee cc...

The S4ME Management Committee have considered the suggestions raised in this thread. We have decided that we cannot support the idea of a "naming and shaming" thread or subforum here on S4ME. One of our major concerns is the risk of legal action against S4ME or its members. The forum itself...

This briefing was prepared by a Science for ME working group of patients, most with a background in science and mathematics. The authors, including Tom Kindlon, Sean Kirby and Graham McPhee, have published over twenty papers and letters of expert commentary on the PACE trial and related matters...

Science for ME are pleased to announce that we have today submitted another critique to the NIH/CDC review (following our earlier submission on the Chalder Fatigue Scale). All credit for this submission should go to the authors, and we are very grateful for all their hard work. The post below...