This public thread is for general discussion of the much anticipated NICE 2021 ME/CFS Guideline including media and social media responses and other organisations' press releases. The NICE ME/CFS Guideline Project documents page gives links to: the Final Guideline the Evidence Review the Stakeholder Feedback on the Draft Guideline Thread here the Draft Guideline NICE guidelines website aimed at healthcare professionals - summarises new ME/CFS guideline The Science for ME submission on the draft Science for ME submission to the NICE draft ME/CFS guideline consultation, December 2020, and submission on substantive errors, August 2021 The drafting team for the Science for ME submission had early access to the embargoed final version of the guideline and has prepared the following documents: A press release - See the following post. [This press release has been approved by the forum committee. It can be used in part or in full, in commentary about the guideline. It has been prepared with United Kingdom audiences in mind, but people elsewhere may find material useful for local advocacy. If you do use it, please let us know.] A feedback document for NICE on substantive errors in the embargoed August version sent 11 August sent: Science for ME submission to the NICE draft ME/CFS guideline consultation, December 2020, and submission on substantive errors, August 2021 A series of Members Only threads for analysis and comment on guideline sections. At the beginning of each thread are posts analysing the changes from the draft version and providing commentary from the submission drafting team. The commentary does not necessarily reflect the view of the whole forum committee. Click through to see the analysis and add your views. 1.1 - Principles of Care Discussion thread here ___________ 1.2 - Suspecting ME/CFS 1.3 - Advice for people with suspected ME/CFS 1.4 - Diagnosis Discussion thread here ______________ 1.5: Assessment and care and support by an ME/CFS specialist team 1.6 - Information and support, needs an outline 1.8: Access to care and support 1.9: Supporting people with ME/CFS in work, education and training 1.10: Multidisciplinary care needs outline review by S 1.13 - Managing co-existing conditions 1.15 - Review in primary care Discussion thread here _______ 1.7 - Safeguarding Discussion thread here _______ 1.11 - Managing ME/CFS - physical activity 1.14 - Managing flare-ups in symptoms and relapse Discussion thread here ______ 1.12 part 1 - Symptom management for people with ME/CFS - sleep, diet etc Discussion thread here _______ 1.12 part 2 - Symptom management for people with ME/CFS - CBT Discussion thread here _________ 1.17 - Care for people with severe or very severe ME/CFS Discussion thread here _________ Terms used Discussion thread here ________ 1.16 - Training for health and social care professionals Recommendations for research Context Discussion thread here The final guideline has some disappointing aspects when compared with the draft. Nevertheless it represents a significant advance over the preceding 2007 Guideline, and it will make a positive difference in the lives of many people with ME/CFS. The Evidence Review, which found no reliable evidence for physical activity programmes and CBT as treatments of ME/CFS, is a sound unbiased analysis that will be very useful in advocacy. We, the forum drafting team, would like to thank everyone who contributed to the guideline, including those who campaigned for it to be done, provided expert testimony, took part in surveys and research, the NICE staff, and especially to those who volunteered and spent over two years working hard and doing their best to contribute usefully on the guideline committee. We thank particularly the people with ME/CFS on the guideline committee who worked selflessly on behalf of the whole patient community.