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==<div id="NICEreview">NICE Guidelines Review for CFS/ME (2017-2021)</div> == NICE initially announced that the 2007 guidelines would not be updated as a result of the 2017 review, but then changed this decision in September 20, 2017; the new ME/CFS guideline were due in April 2020 but were finally published in October 2021. The new guidelines refer to [[ME/CFS]] rather than CFS/ME.<ref name="MEAJul2017" /><ref name="MEApetition" /> ===Reasons for the update=== * Out of 38 stakeholders, 32 wanted to update the guidelines - the [[Royal College of General Practitioners]] plus 31 patient-representative bodies.<ref name="Dec4Meet">{{Cite web|url=https://meassociation.org.uk/2017/12/forward-me-meeting-with-professor-mark-baker-director-of-guidelines-nice-04-december-2017/ | title = Forward-ME Meeting with Professor Mark Baker, Director of Guidelines, NICE {{!}} 04 December 2017 {{!}} The ME Association | last = The ME Association | first = | authorlink = The ME Association | date = 2017-12-04 | website = [[The ME Association]]|language=en-GB|archive-url=|archive-date=|access-date=2021-10-30}}</ref> * The reanalysis of the data from the UK's 2011 £5 million [[PACE trial]] was hugely influential, with the full release of patient data in 2016 clearly showing no clinically significant improvements from [[graded exercise therapy]] (GET) or [[cognitive behavioral therapy]] (CBT, a psychological and behavioral treatment) which were the two key treatments in the 2007 NICE guidelines * New scientific evidence was published, including the U.S. [[Institute of Medicine report]] (2015), and the [[International Consensus Criteria]] (2011)<ref name="SEID2015">{{Citation | last = Institute of Medicine | authorlink = Institute of Medicine | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness|location=Washington, DC|publisher=The National Academies Press | date = 2015 | url=https://www.ncbi.nlm.nih.gov/books/NBK284902/}}</ref><ref name="Smith2016">{{cite journal | vauthors = Smith ME, Nelson HD, Haney E, Pappas M, Daeges M, Wasson N, McDonagh M | title = Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome No. 219| journal = Evidence Report/Technology Assessment | pages = 1–433 | date = December 2014 | pmid = 30313001 | doi = 10.23970/AHRQEPCERTA219 | url = https://www.ncbi.nlm.nih.gov/books/NBK379582/ | publisher = Agency for Healthcare Research and Quality (US) | quote = }}</ref><ref name="ICC2011primer">{{citation | last1 = Carruthers | first1 = BM | authorlink1 = Bruce Carruthers | last2 = van de Sande | first2 = MI | authorlink2 = Marjorie van de Sande | last3 = De Meirleir | first3 = KL | authorlink3 = Kenny de Meirleir | last4 = Klimas | first4 = NG | authorlink4 = Nancy Klimas | last5 = Broderick | first5 = G | authorlink5 = Gordon Broderick | last6 = Mitchell | first6 = T | authorlink6 = Terry Mitchell | last7 = Staines | first7 = D | authorlink7 = Donald Staines | last8 = Powles | first8 = ACP | authorlink8 = A C Peter Powles | last9 = Speight | first9 = N | authorlink9 = Nigel Speight | last10 = Vallings | first10 = R | authorlink10 = Rosamund Vallings | last11 = Bateman | first11 = L | authorlink11 = Lucinda Bateman | last12 = Bell | first12 = DS | authorlink12 = David Bell | last13 = Carlo-Stella | first13 = N | authorlink13 = Nicoletta Carlo-Stella | last14 = Chia | first14 = J | authorlink14 = John Chia | last15 = Darragh | first15 = A | authorlink15 = Austin Darragh | last16 = Gerken | first16 = A | authorlink16 = Anne Gerken | last17 = Jo | first17 = D | authorlink17 = Daehyun Jo | last18 = Lewis | first18 = DP | authorlink18 = Donald Lewis | last19 = Light | first19 = AR | authorlink19 = Alan Light | last20 = Light | first20 = KC | authorlink20 = Kathleen Light | last21 = Marshall-Gradisnik | first21 = S | authorlink21 = Sonya Marshall-Gradisnik | last22 = McLaren-Howard | first22 = J | authorlink22 = John McLaren-Howard | last23 = Mena | first23 = I | authorlink23 = Ismael Mena | last24 = Miwa | first24 = K | authorlink24 = Kunihisa Miwa | last25 = Murovska | first25 = M | authorlink25= Modra Murovska | last26 = Stevens | first26 = SR | authorlink26 = Staci Stevens | title = Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners | date = 2012| isbn = 978-0-9739335-3-6| url = http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf }}</ref> * [[Post-exertional malaise]] was increasingly shown to be the hallmark symptom, not [[fatigue]]<ref name="CDC-IOM-SEIDcriteria">{{Cite web|url=https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html | title = IOM 2015 Diagnostic Criteria {{!}} Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|website=[[Centers for Disease Control and Prevention]] | date = Jan 27, 2021|access-date=2021-02-25}}</ref> * A petition by the [[ME Association]] showed extremely widespread support for change by patients, carers, and the general public * Patient surveys reported consistently that the GET and CBT treatments were ineffective, and had caused wipespread unexpected harm to the physical and mental health of a significant proportion of patients<ref name="survey">{{Cite web|url=https://meassociation.org.uk/2019/04/forward-me-and-oxford-brookes-university-announce-results-of-patient-survey-on-cbt-and-get-in-me-cfs-03-april-2019/ | title = Forward ME and Oxford Brookes University Announce Results of Patient Survey on CBT and GET in ME/CFS {{!}} 03 April 2019 {{!}} The ME Association | last = The ME Association | date = 2019-04-03|language=en-GB|access-date=2021-11-06 | website = The ME Association | first = | authorlink = The ME Association|archive-url=|archive-date=}}</ref><ref name="Nodecisions">{{Cite web|url=http://www.meassociation.org.uk/wp-content/uploads/2015-ME-Association-Illness-Management-Report-No-decisions-about-me-without-me-30.05.15.pdf | title = ME/CFS Illness Management Survey Results - “No decisions about me without me” Part 1 | last = The ME Association | first = | date = May 2015 | website = [[The ME Association]]|publisher=|archive-url=|archive-date=|access-date= | authorlink = The ME Association}}</ref><ref name="OxfordBrookesSurvey">{{Cite web|url = https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf | title = Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes. FINAL REPORT | last = Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS) | date = Feb 27, 2019}}</ref> * Since the publication of the previous guidelines, the [[Netherlands]] and [[United States]] had both abandoned the UK's prominent treatment approaches, and moved from using a underlying [[biopsychosocial model]] to a [[biomedical model]] of ME/CFS<ref name="CDC-IOM-SEIDcriteria" /> * A number of doctors diagnosed with ME/CFS including [[Robin Brown]] and [[Nina Muirhead]] became increasingly critical of the NICE guidelines and the NHS treatment offered to patients, and became involved in advocacy and developing NHS-focused ===<span id="committee">Authors</span>=== List of the NICE ME/CFS Guideline Development Group (GDG) review panel members: * [[Peter Barry]] - Chair, pediatrician * [[Ilora Finlay]] - Vice chair, Baroness Finlay of Llandaff * [[Theo Anbu]] - secondary care pediatrician - clinical lead for Alder Hey pediatric CFS/ME clinic, Liverpool * [[Joanne Bond-Kendall]] - physiotherapist, worked on the Magenta and FITNET trials * [[Mike Beadsworth]] - physician with a special interest in CFS/ME, on the [[BACME]] executive * [[Susan Watson]] - occupational therapist, Leeds and West Yorkshire CFS/ME clinic * [[Jo Daniels]] - psychologist for CFS/ME clinic * [[Luis Nacul]], [[Chris Burton]] - GPs * [[Tony Crouch]] - social worker * [[Alan Stanton]] - community pediatrician * [[Gabrielle Murphy]] - physician with a special interest in ME/CFS, also [[BACME]] Chair, see [[PACE trial]] * [[Charles Shepherd]] - doctor, co-opted member (no voting rights), [[ME Association]] medical advisor * [[William Weir]] - doctor * [[Caroline Kingdon]] - nurse with special interest in ME/CFS<ref>{{Cite web|url=https://twitter.com/mecfsbiobank/status/1093094544009244672 | title = We're delighted to announce that our Research Fellow & Biobank Coordinator Caroline Kingdon has also been appointed to the NICE #MECFS Guideline Committee.<br>While this is yet to be announced on NICE's website, we are sharing the news here now as meetings are beginning.<br>#pwME pic.twitter.com/OH9JPTMARo pic | last = CureME | first = | authorlink = CureME | date = 2019-02-06 | website = Twitter|language=en|archive-url=|archive-date=|url-status=|access-date=2019-02-06}}</ref> ** Dietician - role not filled * Children's community nurse - role not filled (removed from final list) * Lay members - Saran Bonsar, [[Sally Burch]], Nicola Kidby, [[Adam Lowe]], and Dorinda Jack<ref name="gid-ng10091-members">{{Cite web|url=https://www.nice.org.uk/guidance/gid-ng10091/documents/committee-member-list | title = Committee member list {{!}} NICE CG53 CFS/ME guidance update | last = [[NICE]] | first = | date = 16 October 2018 | website = nice.org.uk|archive-url=|archive-date=|url-status=|access-date=20 October 2018}}</ref> * Expert witnesses - [[Greg Crowhurst]] and [[Jonathan Edwards|Dr. Jonathan Edwards]] - invited to give evidence on particular topics<ref name="MEANov2018">{{Cite web|url=https://www.meassociation.org.uk/2018/11/me-association-statement-re-nice-me-cfs-guideline-review-and-committee-appointments-09-november-2018/ | title = ME Association Statement re: NICE ME/CFS Guideline Review and Committee Appointments {{!}} 09 November 2018 | last = Shepherd | first = Charles | authorlink=Charles Shepherd | date = 2018-11-09 | website = [[The ME Association]]|language=en-US|archive-url=|archive-date=|url-status=|access-date=2018-11-15}}</ref> === Stakeholders === A large number of organizations registered as stakeholders, and stakeholder meetings began in 2018.<ref name="interimstake">{{Cite web|url=https://www.nice.org.uk/guidance/gid-ng10091/documents/interim-findings | title = Stakeholder Engagement Meeting Interim Findings {{!}} NICE CFS/ME guidelines review | last = [[NICE]] | first = | date = May 24, 2018 | website = nice.org.uk|archive-url=|archive-date=|url-status=|access-date=}}</ref> ===NICE ME/CFS Diagnostic criteria (from Oct 2021)=== <ref name="MECFSguidelines2021" /> ====Suspected ME/CFS==== *the person has had all of the persistent symptoms in the box below for a minimum of 6 weeks in adults ''(4 weeks in children and young people)'' '''and''' *the person's [[ability to engage in occupational, educational, social or personal activities is significantly reduced from pre‑illness levels]] '''and''' *[[symptoms are not explained by another condition]]. '''All''' the following symptoms are required for suspected ME/CFS: *Debilitating [[fatigue that is worsened by activity]], is not caused by excessive cognitive, physical, [[mental health|emotional]] or social exertion, and is not significantly relieved by rest. *[[Post-exertional malaise]] after activity in which the worsening of symptoms: **is often delayed in onset by hours or days **is disproportionate to the activity **has a prolonged recovery time that may last hours, days, weeks or longer. *[[Unrefreshing sleep]] or [[sleep dysfunction|sleep disturbance]] (or both), which may include: **feeling exhausted, feeling [[flu-like symptoms|flu-like]] and stiff on waking **[[sleep dysfunction|broken or shallow sleep]], altered sleep pattern or [[hypersomnia]] *[[cognitive dysfunction|Cognitive difficulties]] (sometimes described as 'brain fog'), which may include [[word-finding problems|problems finding words or numbers]], difficulty in speaking, slowed responsiveness, short-term [[memory problems]], and [[concentration problems|difficulty concentrating]] or multitasking.<ref name="MECFSguidelines2021" /> Definitions: *'''Activity'''<br /> Any effort that uses energy, which includes cognitive, emotional and social activity as well as physical activity. Different activities combine and interact to cause a cumulative impact for the person. *'''Fatigue'''<br />Fatigue in ME/CFS typically has the following components: ** feeling [[flu-like symptoms|flu-like]], especially in the early days of the illness ** restlessness or feeling 'wired but tired' ** low energy or a [[lack of stamina|lack of physical energy to start or finish activities]] of daily living and the sensation of being 'physically drained' ** cognitive fatigue that worsens existing difficulties ** [[muscle fatigability|rapid loss of muscle strength]] or [[lack of stamina|stamina]] after starting an activity, causing for example, sudden weakness, clumsiness, lack of coordination, and being unable to repeat physical effort consistently. *'''Post-exertional malaise''' The worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks, sometimes leading to a relapse. Post-exertional malaise may also be referred to as post-exertional symptom exacerbation. *'''Unrefreshing sleep'''<br /> Unrefreshing sleep means sleep that is non-restorative. Even after a full night's sleep, people do not feel refreshed. People with ME/CFS often report waking up exhausted and feeling as if they have not slept at all, no matter how long they were asleep.<ref name="MECFSguidelines2021" /> ===Treatments=== ====Neurological disease==== The revised ME/CFS guideline clearly states that ME/CFS is a physical illness: {{Quote2|text=Be aware that ME/CFS... is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated | author=NICE guideline for ME/CFS 2021 [NG206] p.9}} Near the end in the guideline, the ''Context'' section also states it is classified as a Disease of the Nervous System using [[International Classification of Diseases#ICD10|ICD-10]] code G93.3 by the [[World Health Organization]], and by SNOWMED, the GP's computer system.<ref name="MECFSguidelines2021" />{{Rp|84}} ====Management, not a cure==== The new guideline states that no treatments should be regarded as a cure, and that treatments are for symptom management.<ref name="MECFSguidelines2021" /> ====No graded exercise therapy ==== The new guideline states that [[graded exercise therapy]] or any other approach using fixed increases in physical activity or exercise should not be used.<ref name="MECFSguidelines2021" /> ===Criticism and controversies === ====Three month "pause"==== Hours before the new ME/CFS was due to be published, NICE took the extraordinary step of halting publication as a result of several Royal Colleges, including the [[Royal College of Paediatrics and Child Health]] and the [[Royal College of Physicians]], circumventing the guideline review process by complaining to NICE and demanding changes to the final, approved guideline.<ref name="Guardian-17Aug2021">{{Cite news | work=The Guardian | url =https://www.theguardian.com/society/2021/aug/17/uk-health-watchdog-nice-delays-new-me-guidance-therapy-row-chronic-fatigue? | title = UK health standards body delays new ME guidance in therapy row | first = Natalie | last = Grover | date = Aug 17, 2021}}</ref> The delay was heavily criticised by guideline stakeholders including [[Doctors with M.E.]] who accused NICE of acting unlawfully, and all the national patient groups, who had not been aware of the private discussions taking place.<ref name="sense">{{Cite web|url=https://www.senseaboutscience.org.uk/doctors-with-m-e-medical-unlawfulness-and-the-nice-me-cfs-guideline-delay/ | title = Doctors with M.E. : Medical unlawfulness and the NICE ME/CFS Guideline delay | date = 2021-08-18 | website = Sense About Science Blog|language=en-US|access-date=2021-12-09}}</ref> In the UK news coverage, NICE was accused of "capitulating to vested interests" and "putting patients at risk" over the delays.<ref name="Independent-pause">{{Cite web|url=https://www.independent.co.uk/news/health/nice-chronic-fatigue-exercise-therapy-covid-b1904127.html | title = Health watchdog accused of ‘capitulating to vested interests’ over chronic fatigue as it delays new advice | date = 2021-08-17 | website = The Independent|language=en|access-date=2021-12-09}}</ref><ref name="Times-pause">{{Cite news | url=https://www.thetimes.co.uk/article/delays-to-me-guidelines-are-putting-patients-at-risk-s5bzfhxjl | title = Delays to ME guidelines ‘are putting patients at risk’ | last = | first = | date = Aug 2021|work=The Times|access-date=2021-12-09|archive-url=|archive-date=|url-status=|language=en|issn=0140-0460|quote=}}</ref> During the three month "pause" in publication, NICE invited a limited number of guideline stakeholders to a roundtable meeting, and communicated directly with a number of Royal Colleges and other stakeholders.{{citation needed | date = Oct 2021}} ====Patient court case==== After NICE halted publication of the guideline in Aug 2017, a patient began a legal proceedings to challenge NICE over the delay, and find out the reasons for the delay. NICE did not respond to the publication deadline set by the patient's lawyer, but published the guideline soon after.<ref name="LegalChallenge">{{Cite web|url=https://www.thecanary.co/uk/analysis/2021/10/02/nice-is-facing-a-legal-challenge-over-its-me-guidelines-delay/ | title = NICE is facing a legal challenge over its ME guidelines delay | date = 2021-10-02 | website = The Canary|language=en-GB|access-date=2021-12-09}}</ref><ref name="court2021">{{Cite web|url=https://twitter.com/petertodd_/status/1443887167055581188 | title = Peter Todd | last = | first = | authorlink = | date = |website=Twitter|language=en|archive-url=|archive-date=|url-status=|access-date=2021-12-09}}</ref> ====Forward-ME response ==== Forward-ME welcomed the new guideline and highlighted the introduction of [[energy management]] as a new treatment approach in the NICE guideline, including [[pacing]], and the significant improvements made to child safeguarding, stating that "some parents of children with ME have been subjected to inappropriate child protection orders, and threatened with the removal of their children, in the belief that the parents had caused a [[Fabricated Induced Illness|‘fabricated or induced illness’]]." Forward-ME started that "the recommendations on ‘Energy Management’ will also help people with [[Long COVID|LongCovid]] who experience [[Post-exertional malaise|Post-Exertional Malaise]] (PEM), many of whom have reported that [[graded exercise therapy|‘Graded Exercise Therapy’]] worsened their condition, and their symptoms were dismissed as anxiety."<br />"This recommendation is a clear break from the past. Previously, people with ME were offered ‘Graded Exercise Therapy’ (GET), based on a hypothesis that they were [[deconditioning|deconditioned]]. NICE found the evidence for this to be poor quality, and many people with ME reported that GET caused serious harm. The new guideline on ME/CFS was due to be published in August, but NICE ‘paused’ the release following intervention from some clinicians. After a round-table with representatives from the ‘Royal Colleges’ and ME charities, NICE is now confident that the guideline can be fully implemented."<ref name="fwdmepub">{{Cite web|url=https://forward-me.co.uk/news-updates/ | title = NEW NICE GUIDELINES ON ME: FORWARD-ME STATEMENT & MEDIA SUPPORT - Oct 29th 2021 | date =Oct 29, 2021 | last = Forward-ME | authorlink = Forward-ME|access-date=2021-10-29}}</ref><ref name="fwdme-improved">{{Cite web|url=https://forward-me.co.uk/news-updates/ | title = NICE Publishes new Guideline on ME/CFS, driving major improvements in care | date = Oct 29, 2021 | last = Forward-ME | authorlink = Forward-ME|access-date=2021-10-29}}</ref> ====ME Association response==== <ref name="MEA-published">{{Cite web | last = The ME Association | authorlink = The ME Association | url =https://meassociation.org.uk/2021/10/the-new-nice-guideline-on-me-cfs-is-published/? | title = The new NICE guideline on ME/CFS is published! | date = October 29, 2021}}</ref> ====Invest in ME Research response==== Invest in ME Research stated that they welcomed the changes in the new guideline, but felt that undoing the harmful therapies used during the last 14 years was not enough, and the result was a fudge resulting in a guideline that could, and should, have been written in 2007.<ref name="IiMER">{{Cite web | last = Invest in ME Research | authorlink = Invest in ME Research|url=https://investinme.org/ng206-guidelines-publication-oct2021.shtml? | title = NICE GUIDELINES - TAKING US FORWARD TO 2007 | date = October 29, 2021}}</ref> ====Action for ME response ==== ====ME Research UK response ==== ME Research UK broadly welcomed the new guideline as "a significant step in both the acceptance of ME as a physical illness and the recognition of appropriate treatment needs of those affected by the condition" and highlighted the need for further research funding, especially to better establish clear diagnostic criteria.<ref>{{Cite web|url=https://www.meresearch.org.uk/response-to-updated-nice-guideline/ | title = Our response to the updated NICE guideline | date = October 29, 2021 | last = ME Research UK | author-link = ME Research UK}}</ref> ====25% ME Group response ==== ====BACME response ==== The [[British Association for CFS/ME]], the largest group of doctors and health practioners working in UK ME/CFS specialist clinics, welcomed the changes in the guidelines, stating that many of its members had wanted to offer treatments others than [[graded exercise therapy]] and [[cognitive behavioral therapy]] but had been prevented from doing so due to funding being tied to guideline recommendations.<ref name="BACME">{{Cite web|url=https://www.bacme.info/sites/bacme.info/files/BACME | title = Press Statement NICE Guideline publication Oct 2021 | date =Oct 2021 | last = British Association for CFS/ME | authorlink = British Association for CFS/ME}}</ref> ====Royal Colleges response==== The Royal Colleges issued a joint statement stating that the guideline contained some positive changes, but that it understated "the importance of activity and exercise in the management of ME/CFS and the connection between people’s mental and physical health", in particular mentioning their view of the importance of [[cognitive behavioral therapy]] and psychological therapies.<ref name="colleges">{{Cite web|url=https://www.rcplondon.ac.uk/news/medical-leaders-sign-joint-statement-response-nice-guidance-mecfs | title = Royal Colleges Joint Statement | date = Oct 29, 2021 | website = Royal College of Physicians}}</ref> {{collapse top}} Medical leaders sign joint statement in response to NICE guidance on ME/CFS Details 29 October 2021 We are pleased that NICE have now published their guidance for the management of ME/CFS which is a chronic, poorly understood condition and can be highly disabling and distressing. It is important that all patients with this condition are given access to the best possible services and treatments available. The published guideline contains some positive changes, but these do not go as far as we would have liked and understate the importance of activity and exercise in the management of ME/CFS and the connection between people’s mental and physical health. We also do not think the changes represent the positive discussions that have been had with patient groups. As in many chronic conditions, people’s mental and physical health are intrinsically linked. This guidance risks undermining the importance of these links by dismissing the potential of treatments such as Cognitive Behavioural Therapy (CBT) as of less value in alleviating symptoms than pharmacological interventions. There is considerable disquiet in the medical profession and some patient groups about the way the data and evidence have been assessed but the important thing now is that services are commissioned in a safe and effective way that does not disadvantage any patients being treated now or in the future. When commissioning services we would reiterate that: Graded Exercise Therapy) as defined in the guidance is not reflective of the personalised paced exercise programmes that are currently used in the NHS and termed GET. These have provided benefit to many patients and should not be discontinued. However, we recognise that the phrase GET is unhelpful and this terminology should be dropped to allow clinicians to work with their patients in a more productive way. CBT remains a valuable treatment for alleviating symptoms in ME/CFS and services should ensure patients have access to this and other psychological therapies. Specialist rehabilitation medicine services and exercise medicine services regularly look after patients with ME/CFS (and also provide complex care and long-term support for very severe ME/CFS) but are not specifically recommended in the guidance. There are very few dedicated ME/CFS specialist services either in the community or hospital setting and thus if commissioners do not use specialist rehabilitation medicine services and exercise medicine services, these patients will lose out. Commissioners must also take action to ensure training and support is available for the full range of specialist ME/CFS roles needed and are easily accessible for GPs and other clinicians across the NHS, so that this guidance can effectively be put into practice. Many patients with ME/CFS have other conditions including chronic pain and fibromyalgia which are improved with exercise as recommended in other NICE guidance. It is important that a holistic approach is taken to ensure that other conditions do not deteriorate. Royal College of Physicians Royal College of Physicians of Edinburgh Royal College of General Practitioners Royal College of Psychiatrists Academy of Medical Royal Colleges Faculty of Sport and Exercise Medicine Faculty of Occupational Medicine {{collapse bottom}} ====Prof. David Tuller==== ====Other patient groups==== ====Physios for ME response ==== <ref name="physios4me">{{Cite web | last = Physios for ME | authorlink = Physios for ME | title = NICE Publish New Guidelines | date = Oct 2021|url=https://www.physiosforme.com/post/nice-publish-new-guidelines}}</ref> ====Doctors with M.E. response ==== {{Quote box|quote=Doctors with M.E. considers the launch of this guideline to be a watershed moment in the history of ME/CFS medical care in the UK, with implications that extend to those Long Covid (PASC) patients who also meet ME/CFS diagnostic criteria. The new guideline discards discredited psychological theories and therapies in favour of a more patient centred approach, driven by improved scientific understanding. It represents a positive and total paradigm change, uniting around the science, official disease classification and medico-legal compliance implications. Harmful Graded Exercise Therapy is discontinued and must not be replaced with renamed or rebranded versions, which would be clinically, scientifically and legally unsustainable. Accounting for systemic exertion intolerance and post exertional symptom exacerbation is at the heart of the science and the new guideline.<ref name="DwME">{{Cite web | last = Doctors with M.E. | authorlink = Doctors with M.E.|url=https://doctorswith.me/nice-2021-a-triumph-of-science-over-discrimination/? | title = NICE 2021: A Triumph of Science over Discrimination | date = November 1, 2021}}</ref> | author = [[Doctors with M.E.]] | date = Nov 1,2021}} Individuals doctors gave different responses. ===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> ===NICE guidelines NG206 published 2021=== After a series of delays through the NICE guidelines review, including a three month "pause" in publication, the final '''Myalgic encephalomyelitis (or encephalopathy)/Chronic fatigue syndrome: diagnosis and management''' guidelines, known as NG206, were published on October 2021.<ref name="MECFSguidelines2021">{{Cite web|website=[[National Institute for Health and Care Excellence]] | date = Oct 29, 2021|url=https://www.nice.org.uk/guidance/ng206 | title = Myalgic encephalomyelitis (or encephalopathy)/Chronic fatigue syndrome: diagnosis and management {{{|}}} NICE guideline [NG206]}}</ref>
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