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===NICE Guideline revision process (2018-2021)=== The public pressure from ME patients, including a petition by the [[ME Association]], led to the decision to fully revise the guideline and which would not be concluded until around October 2020.<ref name="MEAJul2017" /><ref name="MEApetition" /> NICE held a Stakeholders Engagement Workshop on 16 January 2018 and a summary of the day has been produced by the ME Association <ref name="MEAreport2017">{{Cite web|url=https://meassociation.org.uk/2018/01/reviewing-the-nice-guideline-for-me-cfs-the-stakeholders-engagement-workshop-a-report-by-dr-charles-shepherd-17-january-2018/ | title = Reviewing the NICE guideline for ME/CFS: The Stakeholders Engagement Workshop – A Report by Dr Charles Shepherd | last = | first = | authorlink = | date = 2018-01-17 | website = [[The ME Association]]|language=en-GB|archive-url=|archive-date=|url-status=|access-date=2021-10-30}}</ref>. [[Invest in ME Research]] wrote to Professor Mark Baker, Centre for Guidelines Director, on January 15th 2018 asking NICE to urgently remove or add an addendum or correction for the recommendation of [[Cognitive behavioral therapy|CBT]] and [[Graded exercise therapy|GET]] now to avoid harm to patients<ref name="IMER1801">{{Cite web | last = Invest in ME Research | first = | authorlink = Invest in ME Research | date = Jan 2018|url=http://www.investinme.org/IIMER-Newslet-1801-01.shtml#IiMER-letter | title = Correspondence with Professor Mark Baker - Centre for Guidelines Director, National Institute for Health and Care Excellence}}</ref>. Prof. Baker responded that they could not remove such recommendations for CBT and GET and had to wait for the full review of the guidelines which would be due in 2020. Invest in ME wrote back on 16 January repeating that they should at least add an addendum about CBT/GET. Patient advocates have commented that the right to refuse CBT/GET treatment as stated by Prof Baker is an offer you can't refuse.<ref name="cantrefuse">{{Cite web|url=https://spoonseeker.com/2018/01/28/an-offer-you-cant-refuse/ | title = An Offer You Can’t Refuse | last = Spoonseeker | first = | authorlink = | date = 2018-01-28 | website = spoonseekerdotcom|language=en|archive-url=|archive-date=|url-status=|access-date=2021-10-30}}</ref> An unprecedented proactive open letter to Sir Andrew Dillon was sent on January 12th 2018 by ME sufferers regarding the composition of the new guideline committee due to the history of the CFS/ME NICE guideline and committee and an ''Appeal to NICE concerning the Guideline Committee for ME/CFS'' petition was also launched to support this.<ref name="s4me2018">{{Cite web|url=https://www.s4me.info/threads/grahams-finalised-letter-to-nice-january-2018.1885/ | date = Jan 2018 | website = [[Science for ME]] | title = Graham's finished letter to NICE January 2018}}</ref><ref name="andrewdillonpet">{{Cite web|url=https://www.change.org/p/sir-andrew-dillon-we-call-on-nice-to-ensure-the-guideline-committee-for-me-cfs-is-transparently-unbiased | title = The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision | date = 2017 | last = The ME Association | first = | authorlink = The ME Association |website=Change.org|language=en-US|archive-url=|archive-date=|url-status=|access-date=2021-10-30}}</ref> ME sufferers led by [[Graham McPhee]] from [[MEAnalysis]] produced a video to accompany the letter and petition <ref name="why-PACE-trial-matters">{{Cite web | title = The PACE trial: A Short Explanation {{{|}}} Part 3: Why It Matters|url=https://www.youtube.com/watch?v=7Y6XFipQigE|website=YouTube | last = MEAnalysis | authorlink = MEAnalysis | date = Jan 14, 2018}}</ref>. An unprecedented third petition was launched to NICE ''Stop harming ME/CFS patients - take CBT/GET out of NICE guidelines NOW'' which asked that NICE immediately remove CBT/GET from the guidelines in the face of evidence of harm amounts to medical abuse and violation of human rights.<ref name="stop-harm">{{Cite web|url=https://www.change.org/p/nice-stop-harming-me-cfs-patients-take-cbt-get-out-of-me-cfs-guidelines-now | title = NICE: Stop Harming ME/CFS patients - take CBT and GET out of the CFS guidelines now | last = Brown | first = Robin | authorlink=Robin Brown | date = 2017 | website = Change.org|language=en-US|archive-url=|archive-date=|url-status=|access-date=2021-10-30}}</ref> In a BBC Newsround article it was again stated by patient groups that the guideline for CBT/GET should be withdrawn immediately but this was refuted by a statement by the "country's leading ME researchers" that they should not. It was later clarified that many of the proponents were involved in the PACE trial. The article stated that in 2018 "NICE admits there is "controversy" around existing treatments" <ref name="BBC44004882">{{Cite web| title = Chronic fatigue syndrome treatment 'should be withdrawn' | date = May 8, 2018 | url=https://www.bbc.co.uk/news/newsbeat-44004882 | website = BBC Newsbeat}}</ref>. A scoping workshop was undertaken on May 25th, 2018. It was announced that the new Chair of the GDG would be Dr [[Peter Barry]] and the Vice Chair [[Ilora Finlay]]. A draft scope consultation was also produced <ref name="draft-scope">{{Cite web|website=[[National Institute for Health and Care Excellence]] | date = 2018 | url=https://www.nice.org.uk/guidance/ng206/documents/final-scope | title = Guideline scope (draft)|access-date= | last = | first = | authorlink = |archive-url=|archive-date=|url-status=|edition=}}</ref>. The name of the illness was changed from CFS/ME to ME/CFS and the new guideline was called ''Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management''.<ref name="gid-ng10091">{{Cite web|website=[[National Institute for Health and Care Excellence]] | date = Jun 27, 2018|url=https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents | title = Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management GID-NG10091|url-status=usurped}}</ref> Some stakeholders were not notified until the night before of the workshop.<ref name="IiMEMay2018">{{Cite web | last = Invest in ME Research | first = | authorlink = Invest in ME Research | date = May 25, 2018|url=http://www.investinme.org/Documents/NICE/NICE%20May%202018.pdf | title = NICE GUIDELINES FOR MYALGIC ENCEPHALOMYELITIS (ME)}}</ref> Others raised some concerns with the stakeholder workshop.<ref name="MEAct-notheard">{{Cite web|url=https://www.meaction.net/2018/05/30/listened-to-but-were-we-heard-the-nice-guidelines-scoping-workshop/ | title = “Listened to but were we heard?” The NICE guidelines scoping workshop | date = 2018-05-31 | website = #MEAction Network|language=en-US|access-date=2021-10-30}}</ref> Positive Health magazine reported on ''What Can We Expect from the Current Review of NICE Guideline CG53'' and concluded that the [[Biopsychosocial model|biopsychosocial (psychiatric) model]] proponents would still try to influence the guidelines to retain the status quo.<ref>{{Cite web|url=http://www.positivehealth.com/article/cfs-me/what-can-we-expect-from-the-current-review-of-nice-guideline-cg53 | title = What Can We Expect from the Current Review of NICE Guideline CG53 | last = | first = | authorlink = | date = | website = Positive Health Online|archive-url=|archive-date=|url-status=|access-date=2021-10-30}}</ref>
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