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1.11 pt I Managing ME/CFS Energy management, Physical maintenance, physical activity 1.11.1 - 1.11.3 (1 of 4) 1.11.1 p.24 lines 4-5: We agree with this statement and its inclusion in the guideline. ————————————————— Energy management 1.11.2 p. 24 line 7: We suggest substantial revision...

Section 1.10 Multidisciplinary care p.22 line 13: We suggest changing the heading of section 1.10 from 'Multidisciplinary care' to 'Coordination of care', as referred to in Evidence Review I (p.23 line 46) and to reflect use in the NICE clinical guideline, 'Multiple sclerosis in adults...

Section 1.9 Supporting people with ME/CFS in work, education and training 1.9.1 page 21 lines 4 - 5 Many people with ME/CFS will not be able to return to work or education at all, or may gradually deteriorate due to doing more than can be sustained. Therefore the advice needs to be realistic...

Section 1.8 Access to Care page 17 line 20 Access to Care: Overall section 1.8 is helpful. We are concerned that there will be a wide gap between what is recommended and what happens in practice. We recommend that the importance of this section be emphasised in the guideline. Many people with...

1.7 Safeguarding p.16 line 5 (General): Move the content of 1.7 Safeguarding ME/CFS to the Section 1.2 Suspecting ME/CFS. The reason safeguarding requires comment in this guideline is because there have been failures on the part of doctors to recognise ME/CFS, and to convey that diagnosis and...

1.6 Information and support p. 13 line 14: We appreciate that section 1.6 sets out the major impact of the illness on the lives of people with ME/CFS and makes it clear how important accurate and up-to-date information on financial and social support for people with ME/CFS and their families...

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...