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1.5 Assessment and care planning by a specialist ME/CFS team p.11 line 13: There should be a clear statement in section 1.5 that people with ME/CFS should not be referred to MUS or fatigue clinics for assessment and care planning or at any other stage in the diagnosis, assessment and care of...

1.4 Diagnosis ————————————————- 1.4.1 p.11 line 3: We suggest a list of common conditions that should be excluded as part of the diagnostic process and a list of tests that should be carried out be specified, so that GPs have guidance on this for cases where specialist referral is not...

1.3 Advice for people with suspected ME/CFS 1.3.1 p.10 lines 15-21: The advice to people with suspected ME/CFS to rest and not to use more energy than they perceive they have is good and should be retained. We suggest the term 'symptom-contingent pacing' be used throughout the guideline, to...

1.2 Suspecting ME/CFS --------------------- 1.2.1 ——————— 1.2.2: p. 8 lines 5-9: We suggest addition of a bullet point in 1.2.2 stating the person with ME/CFS should keep an activity and symptom diary for review as part of this assessment. This should be compared with premorbid activity...

1.1.6 - 1.1.11 ------------------- 1.1.6 ------------------- 1.1.7 ------------------- Awareness of severe and very severe ME/CFS and its impact 1.1.8 p.6 lines 7-27: We think this section represents a significant advance in clearly stating the needs of people with severe and very severe...

Section 1.1 Principles of care for people with ME/CFS 1.1 - 1.5 1.1.1 p.4 line 5: The word ‘complex’ should be deleted. The underlying pathology is unknown so cannot validly be described as 'complex'. 'Complex' can be misunderstood to imply inaccurately that there are complex...

General Introduction to our submission Our submission is based on extensive discussions of the guideline by members of a science-focused ME/CFS online forum (Science for ME), which has a diverse membership that includes people with ME/CFS of all severity levels, carers, scientists and...

General Medical care models and the use of evidence. NICE guidance for the management of conditions for which there is no effective treatment must be based on the best available evidence, just as it is for conditions for which there are effective treatments. Where the guideline cannot make...

General We have made comprehensive and detailed suggestions for changes to the draft guideline and we are only one of many stakeholders making a submission. The total amount of feedback for the Guideline Committee to consider will be large, with some points likely to provoke strongly opposing...

Here is the Science for ME submission to NICE (The UK National Institute for Health and Care Excellence) consultation on its draft guideline: ME/CFS: diagnosis and management The following posts were copied to the NICE template and submitted on 20th December 2020. A PDF version of the...

Thanks to everyone who participated in the discussion threads on the NICE Guideline draft for your thoughtful comments. We will be closing those threads now. A small team is working on the draft which will be shared with you for final comment before it is submitted on 22 December.

A reminder to anyone interested in adding comments to the individual discussion threads about each section of the guideline - the threads will be closed this Friday (27th November). After that you will have to wait until the draft submission is ready a couple of weeks later to have your final...

From the committee news forum: Dear members, The forum is working collectively to develop a submission on the NICE ME/CFS Guideline draft. We have separate threads for each section of the guideline where you can post your comments. In these threads, we are maintaining running summaries of...

Trish here. I have been drafting the summary for the weekly News in Brief and thought this list of links to documents and responses so far might be useful. They have all been posted on this thread: Draft Guideline here NICE consultation page (including links to Evidence Reviews and Supporting...

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.