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The NICE guidelines for the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) were published in August 2007. They are used by the [[NHS]] and other medical professionals in the [[United Kingdom|UK]] for diagnosing and treating [[ME/CFS]].
The '''NICE guidelines''' are the [[United Kingdom|UK]]'s [[National Health Service|National Health Service]] (NHS) diagnostic and treatment guidelines for [[ME/CFS|myalgic encephalomyelitis/chronic fatigue syndrome]] (ME/CFS), but are written only for use in [[England]] and [[Wales]]. In 2018, NICE began appointing a committee of professionals and lay members to [[NICE_guidelines#committee|NICE guidelines review committee]] to rewrite the guidelines.<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> The new ME/CFS guidelines were published in October 2021, and include changes to the diagnostic criteria and recommended treatments.<ref name="MECFSguidelines2021" />


==Authors==
NICE, the [[National Institute for Health and Care Excellence]]''',''' is a [[United Kingdom|UK]] government body that approves and recommends treatments for use within the NHS with the mission to improve health and social care through evidence-based guidance.<ref name="nice">{{Cite web|url=https://www.nice.org.uk/ | title = NICE {{!}} The National Institute for Health and Care Excellence | website = National Institute for Health and Care Excellence|access-date=2019-01-13}}</ref>  
The CFS/ME guideline development group consisted of the following members: [[Richard Baker]], [[Jessica Bavinton]], [[Esther Crawley]], [[Tony Downes]], [[Richard Eddleston]], [[Ute Elliot]], [[Richard Grünewald]], [[William Hamilton]], [[Judith Harding]], [[Frederick Nye]], [[Amanda O'Donovan]], [[Alastair Santhouse]], [[Julia Smedley]], [[David Vickers]], [[Gillian Walsh]], [[Carol Wilson]], [[Philip Wood]], [[Gary Britton]], [[Stefanie Kuntze]], [[Elizabeth Shaw]], [[Nancy Turnbull]], and [[Tanya Harrison]].<ref>[https://www.nice.org.uk/guidance/CG53/documents/chronic-fatigue-syndrome-myalgic-encephalomyelitis-gdg-members-declaration-of-interests2 GDG Members' Declaration of Interests]</ref>


==Definition==
==<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>
 
==NICE Guidelines for CFS/ME - CG53 (2007) ==
The NICE guideline for CFS/ME (CG53) for the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) were published in August 2007. They are used by the [[NHS]] and other medical professionals in the [[United Kingdom|UK]] for diagnosing and treating [[CFS/ME]].
 
===Authors===
The CFS/ME guideline development group consisted of the following members: Richard Baker, [[Jessica Bavinton]], [[Esther Crawley]], Tony Downes, Richard Eddleston, Ute Elliot, Richard Grünewald, William Hamilton, Judith Harding, Frederick Nye, Amanda O'Donovan, [[Alastair Santhouse]], Julia Smedley, David Vickers, Gillian Walsh, Carol Wilson, Philip Wood, Gary Britton, Stefanie Kuntze, Elizabeth Shaw, Nancy Turnbull, and [[Tanya Harrison]].<ref name="CG53members">{{Cite web|url=https://www.nice.org.uk/guidance/CG53/documents/chronic-fatigue-syndrome-myalgic-encephalomyelitis-gdg-members-declaration-of-interests2 | website = [[National Institute for Health and Care Excellence]] | title = GDG Members' Declaration of Interests}}</ref>
 
===<span id="2007">NICE Definition (2007-Oct 2021)</span>===
Healthcare professionals should consider the possibility of CFS/ME if a person has:
Healthcare professionals should consider the possibility of CFS/ME if a person has:


Line 24: Line 226:
**[[cognitive dysfunction]], such as difficulty thinking, [[attention deficit|inability to concentrate]], [[memory problems|impairment of short-term memory]], and difficulties with word-finding, planning/organising thoughts and information processing  
**[[cognitive dysfunction]], such as difficulty thinking, [[attention deficit|inability to concentrate]], [[memory problems|impairment of short-term memory]], and difficulties with word-finding, planning/organising thoughts and information processing  
**[[post-exertional malaise|physical or mental exertion makes symptoms worse]]
**[[post-exertional malaise|physical or mental exertion makes symptoms worse]]
**[[general malaise]] or [[flu-like symptoms|‘flu-like’ symptoms]]
**general malaise or [[flu-like symptoms|"flu-like" symptoms]]
**[[dizziness]] and/or [[nausea]]
**[[dizziness]] and/or [[nausea]]
**[[palpitations]] in the absence of identified cardiac pathology
**[[heart palpitation|palpitations]] in the absence of identified cardiac pathology


Healthcare professionals should be aware that the symptoms of CFS/ME fluctuate in severity and may change in nature over time.
Healthcare professionals should be aware that the symptoms of CFS/ME fluctuate in severity and may change in nature over time.
Line 34: Line 236:
*signs and symptoms of inflammatory [[arthritis]] or connective tissue disease  
*signs and symptoms of inflammatory [[arthritis]] or connective tissue disease  
*signs and symptoms of cardiorespiratory disease   
*signs and symptoms of cardiorespiratory disease   
*significant weight loss  
*significant [[weight loss]]
*[[sleep apnoea]]
*[[sleep apnea]]
*clinically significant lymphadenopathy
*clinically significant lymphadenopathy


Line 46: Line 248:
*[[cognitive dysfunction|cognitive difficulties]]   
*[[cognitive dysfunction|cognitive difficulties]]   
*[[sleep disturbance]]
*[[sleep disturbance]]
*[[chronic pain]]<ref>[https://www.nice.org.uk/guidance/cg53/evidence/full-guideline-196524109 Full NICE Guidelines for CFS/ME (pdf)]</ref>
*[[chronic pain]]<ref name="CG53-evidence">{{Cite web|url=https://www.nice.org.uk/guidance/cg53/evidence/full-guideline-196524109 | title = NICE Guidelines for CFS/ME: diagnosis and [CG53]}}</ref>


==Criticism==
===Criticism and controversy===


Add criticism from 2007 here.
Charities and patient groups condemned the guidelines as "unfit for purpose".


The submissions were from:
The submissions were from:


''Invest in ME'
====[[Invest in ME]] Submission====
 
*[http://www.investinme.org/IIME%20Campaigning-NICE-Clinical-Guidelines.shtml IIME Response to draft guidelines November 2006]  
*[http://www.investinme.org/IIME%20Campaigning-NICE-Clinical-Guidelines.shtml IIME Response to draft guidelines November 2006]  
*[http://www.investinme.org/Documents/PDFdocuments/Invest%20in%20ME%20-%20CFSME%20Consultation%20Stakeholder%20Comments%20Form%20-%20Official%20IiME%20Response.pdf IIME  Stakeholder Submission Response to full Guidelines]
*[http://www.investinme.org/Documents/PDFdocuments/Invest%20in%20ME%20-%20CFSME%20Consultation%20Stakeholder%20Comments%20Form%20-%20Official%20IiME%20Response.pdf IIME  Stakeholder Submission Response to full Guidelines]
*[http://www.investinme.org/Documents/PDFdocuments/IiME%20Official%20Response%20Final%20to%20CG53%20Full%20Guidance.pdf IIME  Respone to Final August 2007 NICE Guidelines CG53]
*[http://www.investinme.org/Documents/PDFdocuments/IiME%20Official%20Response%20Final%20to%20CG53%20Full%20Guidance.pdf IIME  Respone to Final August 2007 NICE Guidelines CG53]


[[ME Association]]  
==== [[ME Association]] Submission====
[http://www.meassociation.org.uk/2007/09/nice-guideline-on-mecfs-mea-statement/ August 2007 Submission]
*[http://www.meassociation.org.uk/2007/01/nice-guideline-mea-response/ MEA Submission on draft NICE guidelines]
[Comment on draft NICE guidelines http://www.meassociation.org.uk/2007/01/nice-guideline-mea-response/]
*[http://www.meassociation.org.uk/2007/09/nice-guideline-on-mecfs-mea-statement/ MEA August 2007 Comments]


*[[Action for ME]]
====[[25 Percent ME Group]] Submission====


* [[Tymes Trust]]
*[http://www.25megroup.org/Campaignging/ME%2520TOPICS/NICE/NICE%2520draft%2520Response%25202.10.06.doc 25% ME Group Response to NICE]


==NICE Judicial Review Court Case (2009)==
====[[Tymes Trust]] Submission====


Add the court case background and links here.
Tymes Trust [http://www.tymestrust.org/txt/view200611nicesubmission.txt November 2006 Submission]


Some links here http://www.angliameaction.org.uk/NICEJR/
====[[Action for ME]] Submission====


==Move to static list (2011)==
====Agreed statement from all ME Charities====
 
An agreed statement was also put out by all ME Charities.<ref>{{Cite web|url=http://www.25megroup.org/Campaignging/ME%20TOPICS/NICE/Consultation/NICE%20Guidelines%20Agreed%20Statement%20by%20Charities.doc | title = NICE Guidelines Agreed Statement by Charities|website=[[25 Percent ME Group]]|url-status=dead}}</ref>
 
====Criticism of the York Review by Professor Hooper====
 
The NICE guidelines were based on the evidence presented by the 2005 [[York Review]], produced by the [[Centre for Reviews and Dissemination]] (CRD). Prof. [[Malcolm Hooper]] submitted written criticism of the York Review to UK Parliament, stating that this supposedly independent review was strongly influenced by the [[Wessely school]]'s [[biopsychosocial model]]. Hooper & Reid published an analysis of the failings in the York Review.
 
Professor Hooper also submitted written evidence to the House of Commons Select Committee on NICE and the CFS/ME guidelines.<ref name="hooperparliament">{{Cite web | title = Select Committee on Health Written Evidence {{!}} Evidence submitted by Professor Malcolm Hooper (NICE 07) | date = 2007 | url=https://publications.parliament.uk/pa/cm200607/cmselect/cmhealth/503/503we79.htm | website = Parliament UK}}</ref>
 
====MEActionUK Submission and Reports====
 
[[MEActionUK]] published their ''Concerns and Submission'' about the draft NICE guidelines in October 2006.<ref name="Concerns2006">{{Cite web | date = 2006 | url-status=dead|website=MEActionUK | title = Concerns re: NICE|url=http://www.meactionuk.org.uk/MW/2006/concerns-re-nice.pdf}}</ref> MEActionUK also published comment on the final draft of the August 2007 guidelines.<ref name="comments2007">{{Cite web | date = 2007 | url-status=dead|website=MEActionUK | title = Comments on the NICE guidelines|url=http://www.meactionuk.org.uk/MW/2007/comments-on-nice-guidelines.pdf}}</ref>  The failure by NICE to fulfil its remit and the biomedical evidence that NICE ignored in its production is also investigated and reported on.<ref name="GETfacts">{{Cite web | date = 2008|url-status=dead|website=MEActionUK | title = Facts re: GET|url=http://www.meactionuk.org.uk/MW/2008/facts-re-get.pdf}}</ref><ref>{{Cite web | date = 2008|url-status=dead|website=MEActionUK | title = Immunological and Neuroendocrine evidence|url=http://www.meactionuk.org.uk/MW/2008/immunol-and-neuroendo.pdf}}</ref> MEAction UK have published a number of other reports into the criticism of the NICE guidelines on their website.
 
===NICE Judicial Review Court Case (2009)===
 
In 2009, two ME patients launched a court case against NICE and against the newly-published NICE guidelines, leading to a judicial review which was not successful.<ref name="IIMER-JR">{{citation | date = Mar 2009|url=https://www.investinme.org/IIME%20Campaigning-NICE-Whats-Next.shtml | title = Post-Judicial Review Comment | last = Invest in ME Research | authorlink = Invest in ME Research}}</ref><ref name="DwME-NICE2021">{{Cite web|url=https://doctorswith.me/nice-2021-a-triumph-of-science-over-discrimination/? | title = NICE 2021: A Triumph of Science over Discrimination Post | last = Doctors with M.E. | authorlink = Doctors with M.E. | date = Nov 1, 2021|quote=2009: Quasi-extrajudicial termination of Judicial Review, leveraging unusually aggressive and tenuous grounds against both plaintiff and their lawyer to ensure process could not proceed}}</ref>
 
==Move to static list (2013)==
 
On September 2013 NICE placed the CFS/ME guidelines CG53 on a static list and confirmed they won't be reviewing them,<ref>{{Cite web|url=https://meassociation.org.uk/2013/09/nice-confirm-they-wont-be-reviewing-their-guideline-on-mecfs-any-time-soon-unless-26-september-2013/ | title = NICE confirm they won’t be reviewing their ME/CFS Guideline any time soon, unless... {{!}} 26 September 2013 | last = The ME Association | first = | authorlink = The ME Association | date = 2013-09-26 | website = |language=en-GB|archive-url=|archive-date=|access-date=2021-12-09}}</ref> this then led to protests from patients, researchers and clinicians; and a guideline review was announced in September 2017. There were considerable concerns raised on 2013.
 
The [[Countess of Mar]] and [[Forward-ME]] said "We express our extreme concern over this proposal and strongly feel that the guideline must remain on the active list for the following reasons. Medical and scientific advances in relation to ME and CFS are taking place very rapidly." This was a joint letter was signed by a number of ME Charities.<ref name="MEA2013">{{Cite web|url=https://meassociation.org.uk/2013/10/countess-of-mar-group-joins-chorus-of-condemnation-against-nice-plan-to-do-nothing-28-october-2013/ | title = Countess of Mar group condemn NICE plan to do nothing with ME/CFS Guideline review {{!}} 28 October 2013 | last = The ME Association | first = | authorlink = The ME Association | date = 2013-10-28 | website = [[The ME Association]]|language=en-GB|archive-url=|archive-date=|access-date=2021-12-09}}</ref>
 
The [[ME Association]] opposed the plan to place it on static list and wrote a submission with four reasons including that "Along with most other ME/CFS charities, and people with ME/CFS, we have been unable to endorse the current NICE guideline."<ref name="MEAOct2013">{{Cite web|url=https://meassociation.org.uk/2013/10/mea-opposes-plan-to-put-review-of-nice-mecfs-guideline-on-hold-23-october-2013/ | title = MEA opposes plan to put review of NICE ME/CFS Guideline on hold {{!}} 23 October 2013 | last = The ME Association | first = | authorlink = The ME Association | date = 2013-10-23 | website = [[The ME Association]]|language=en-GB|archive-url=|archive-date=|access-date=2021-12-09}}</ref>
 
Patients and patient advocacy groups are not in favor of the NICE guidelines and on June 25th 2014 the [[Forward-ME]] Group met with Prof Mark Baker, Director of the Centre for Clinical Practice at the  National Institute for Health and Clinical Excellence (NICE)]. Professor Baker that the [[ME/CFS]] Guideline did not meet patient needs nor those of NICE. He said the Guideline did not promote innovation and only a "passive" intervention such as CBT and Graded Exercise. "There was not much of an evidence base to go on, and in NICE it was evidence that drove guidance."<ref name="wames2014">{{Cite web | last = Welsh Association of ME & CFS Support | authorlink = Welsh Association of ME & CFS Support|url=http://wames.org.uk/cms-english/2014/07/nice-admits-cfsme-guideline-does-not-meet-the-need/|quote=On June 25th 2014 the Forward ME Group met with Prof Mark Baker, Director of the Centre for Clinical Practice at the National Institute for Health and Clinical Excellence (NICE). | date = Jul 2014 | title = NICE admits CFS/ME guidelines don't meet the needs of patients}}</ref>
 
[[Doctor Speedy]] weighs in with ''Is it NICE guidelines or NONSENSE guidelines?'' and the [[ME Association]]'s Dr. [[Charles Shepherd]] pointed out during a meeting with Dr. Martin McShane of [[National Health Service|NHS]] England "that graded exercise therapy was causing harm to patients and that if a drug was causing harm, guidelines would be reviewed immediately."<ref>{{Cite web|url = http://niceguidelines.blogspot.com/2007/09/is-it-nice-guidelines-or-nonsense.html | date = Sep 2007| title = Is it NICE guidelines or NONSENSE guidelines?}}</ref><ref>{{Cite web|url=https://www.meaction.net/2015/10/10/forward-me-turn-up-the-heat-on-the-mecfs-nice-guideline/ | title = Push to change ME/CFS NICE guideline | date = 2015-10-10 | last = The MEAction Network|url-status=dead|website=The MEAction Network|language=en-US|access-date=2021-11-06}}</ref>
 
A FOI request to NICE about the US developments was submitted to NICE in 2016 and they responded to it in 2016 in which they dismissed foreign work on ME/CFS.<ref name="MEA2016">{{Cite web|url=https://meassociation.org.uk/2016/10/nice-takes-a-dim-view-of-foreign-work-on-mecfs-robin-ellis-freedom-of-information-request-24-october-2016/ | title = NICE takes a dim view of foreign research into ME/CFS {{!}} Robin Ellis Freedom of Information request {{!}} 24 October 2016 | last = The ME Association | first = | authorlink = The ME Association | date = 2016-10-24 | website = [[The ME Association]]|language=en-GB|archive-url=|archive-date=|access-date=2021-12-09}}</ref>


==NICE 10 year surveillance (2017)==
==NICE 10 year surveillance (2017)==


In June 2017 stakeholders were advised that NICE would consider reviewing the guidelines <ref> http://www.meassociation.org.uk/2017/06/the-nice-guideline-saga-how-we-got-to-where-we-are-24-june-2017/
In June 2017 stakeholders were advised that NICE would consider reviewing the guidelines.<ref name="MEAsaga2017">{{Cite web | last = ME Association | authorlink = ME Association | title = The NICE guideline saga: how we got to where we are now {{!}} 24 June 2017 | date = 2017-06-24|url=http://www.meassociation.org.uk/2017/06/the-nice-guideline-saga-how-we-got-to-where-we-are-24-june-2017/}}</ref> In July NICE stated they decided not to review the guidelines.<ref name="MEA2017-noupdate">{{Cite web | last = ME Association | authorlink = ME Association | title = Breaking news: ME Association has heard back from NICE about the guideline review and it's not good news {{!}} 5 Jul 2017 | date = 2017-07-05|url=http://www.meassociation.org.uk/2017/07/breaking-news-me-association-has-heard-back-from-nice-about-the-guideline-review-and-its-not-good-news-05-july-2017/}}</ref>
</ref>. In July NICE stated they decided not to review the guidelines <ref> http://www.meassociation.org.uk/2017/07/breaking-news-me-association-has-heard-back-from-nice-about-the-guideline-review-and-its-not-good-news-05-july-2017/NICE proposed to not update the guidelines</ref>.


A petition to NICE [https://www.change.org/p/petition-the-nice-guideline-for-cfs-me-is-unfit-for-purpose-and-needs-a-complete-revision 'The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision'] gathered over 15,000 signatures
A petition to NICE, ''The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision'', gathered over 15,000 signatures.<ref name="unfit-petition">{{Cite web|website=Change.org | title = Petition: the NICE guideline for CFS/ME is unfit for purpose and needs a complete revision | date = 2017 | url=https://www.change.org/p/petition-the-nice-guideline-for-cfs-me-is-unfit-for-purpose-and-needs-a-complete-revision}}</ref>


All patient stakeholders requested that guidelines be reviewed.  
All patient stakeholders requested that guidelines be reviewed.  


*[[The MEAction Network]]'s [http://www.meaction.net/2017/07/23/nice-2017-response response to NICE] stated the NICE guidelines be reviewed and "Given the context of this discrimination, we ask that the updated NICE guidelines be made clearer to account for the limitations of the evidence, patient reports of long term relapse following graded exercise, and the importance of genuine patient choice without reprisal" <ref>http://www.meaction.net/2017/07/23/nice-2017-response/ </ref>.
*[[The MEAction Network]]'s response to NICE stated the NICE guidelines be reviewed and "Given the context of this [[discrimination]], we ask that the updated NICE guidelines be made clearer to account for the limitations of the evidence, patient reports of long term relapse following graded exercise, and the importance of genuine patient choice without reprisal."<ref name="MEA-nice-response">{{Cite web | last = MEAction | authorlink =  The MEAction Network | title = NICE response 2017 | date = Jul 23, 2017|url=http://www.meaction.net/2017/07/23/nice-2017-response/|access-date= | website = | first = |archive-url=|archive-date=|url-status=dead}}</ref>
 
*[[Invest in ME Research]]'s response to NICE stated the NICE guidelines be reviewed.<ref name="IMER-comments-form">{{Cite web | last = Invest in ME Research | authorlink = Invest in ME Research | title = Comments form from Invest in ME Research 23-7-2017 | date = Jul 23, 2017|url=http://www.investinme.org/Documents/NICE/comments-form-2%20-%20from%20INVEST%20in%20ME%2023-7-2017.pdf}}</ref>
 
*[[Forward-ME]]'s response to NICE stated the NICE guidelines be reviewedand included "Because the current guideline directs patients squarely towards behavioral management, it clearly does obstruct patients’ access to biological testing, treatment and support. To avoid this [[Ethical issues|ethical violation]], we request that the guideline be revised to present a truthful, neutral picture of the current debate about the nature and management of CFS/ME."<ref>{{Cite web | authorlink =Forward-ME | last = Forward-ME | title = 10 year surveillance report (2017) | date = 2017 | url=http://www.forward-me.org.uk/Reports/10%20year%20surveillance%20(2017).pdf}}</ref>


*[[Invest in ME]]'s [http://www.investinme.org/Documents/NICE/comments-form-2%20-%20from%20INVEST%20in%20ME%2023-7-2017.pdf response to NICE] stated the NICE guidelines be reviewed <ref>http://www.investinme.org/Documents/NICE/comments-form-2%20-%20from%20INVEST%20in%20ME%2023-7-2017.pdf</ref>.
*[[Hope 4 ME & Fibro NI]]'s response to NICE stated the NICE guidelines need to be reviewed.<ref name="hope4-comments">{{Cite web| title = NI Comments form 2 | last = Hope 4 ME and Fibro NI | date = Jul 2017|url=http://hope4mefibro.org/wp-content/uploads/2017/07/Hope-4-ME-Fibro-NI-comments-form-2.pdf}}</ref>


*[[Forward ME]]'s [http://www.forward-me.org.uk/Reports/10%20year%20surveillance%20(2017).pdf response to NICE] stated the NICE guidelines be reviewedand included "Because the current guideline directs patients squarely towards behavioural management, it clearly does obstruct patients’ access to biological testing, treatment and support. To avoid this ethical violation, we request that the guideline be revised to present a truthful, neutral picture of the current debate about the nature and management of CFS/ME. "<ref> http://www.forward-me.org.uk/Reports/10%20year%20surveillance%20(2017).pdf</ref>.
*[[ME Association]]'s response stated the NICE guidelines be reviewed.<ref name="MEAJul2017">{{Cite web | last = ME Association | authorlink = ME Association | title = MRA Submission to NICE re: Guideline Revise {{!}} 21 July 2017 | date = Jul 21, 2017|url=http://www.meassociation.org.uk/wp-content/uploads/MEA-Submission-to-NICE-re-Guideline-Review-21-July-2017.pdf}}</ref>


*[[Hope for ME Fibro]] [http://hope4mefibro.org/wp-content/uploads/2017/07/Hope-4-ME-Fibro-NI-comments-form-2.pdf response to NICE] stated the NICE guidelines be reviewed <ref>http://hope4mefibro.org/wp-content/uploads/2017/07/Hope-4-ME-Fibro-NI-comments-form-2.pdf</ref>.
*[[Action for ME]] stated the NICE guidelines be reviewed and "strongly disagrees with the proposal not to update the guideline for the following reasons...There is not, at the present time, a conclusive evidence base for treatments for CFS/M.E., including those recommended in the guideline, such as CBT and/or GET."<ref name="AfMEconsultant">{{Cite web | title = NICE consultation response | last = Action for ME  | authorlink = Action for ME  | date = 2017 | url = https://www.actionforme.org.uk/uploads/pdfs/NICE-consultation-response.pdf}}</ref>


*[[ME Association]]'s [http://www.meassociation.org.uk/wp-content/uploads/MEA-Submission-to-NICE-re-Guideline-Review-21-July-2017.pdf response to NICE] stated the NICE guidelines be reviewed.<ref>http://www.meassociation.org.uk/wp-content/uploads/MEA-Submission-to-NICE-re-Guideline-Review-21-July-2017.pdf </ref>.
* [[Tymes Trust]]'s response to NICE stated the NICE guidelines be reviewed.<ref name="TT-2017">{{Cite web | last = Tymes Trust | authorlink = Tymes Trust | date = Jul 2017| title = Tymes Trust NICE 2017 | url = http://www.tymestrust.org/pdfs/ttnice201707.pdf}}</ref>


*[[Action for ME]] [https://www.actionforme.org.uk/uploads/pdfs/NICE-consultation-response.pdf response to NICE] stated the NICE guidelines be reviewed and  "strongly disagrees with the proposal not to update the guideline for the following reasons...There is not, at the present time, a conclusive evidence base for treatments for CFS/M.E., including those recommended in the guideline, such as CBT and/or GET."<ref> https://www.actionforme.org.uk/uploads/pdfs/NICE-consultation-response.pdf</ref>.
The ME Association described the public response to its petition as "The biggest expression of no confidence in a NICE guideline ever recorded".<ref name="MEApetition">{{Cite web|url=https://meassociation.org.uk/2017/07/me-association-petition-represents-biggest-expression-of-no-confidence-in-a-nice-guideline-ever-recorded-26-july-2017/ | title = ME Association petition represents biggest expression of no confidence in a NICE guideline ever recorded | authorlink = The ME Association | first = | last = The ME Association | date = 2017-07-26 | website = |language=en-GB|archive-url=|archive-date=|url-status=|access-date=2021-10-30}} </ref>


* [[Tymes Trust]] [http://www.tymestrust.org/pdfs/ttnice201707.pdf response to NICE] stated the NICE guidelines be reviewed  <ref>http://www.tymestrust.org/pdfs/ttnice201707.pdf</ref>.
A letter was also sent to the Chief Executive of NICE Sir Andrew Dillon.<ref name="Dillon2017">{{Cite web| title = Letter to Sir Andrew Dillon 24.07.17|url=http://www.meassociation.org.uk/wp-content/uploads/ME-Association-Letter-to-Sir-Andrew-Dillon-24.07.17.pdf | date = Jul 24, 2017 | last = The ME Association | authorlink = The ME Association|website=[[The ME Association]]}}</ref>


[http://www.meassociation.org.uk/2017/07/me-association-petition-represents-biggest-expression-of-no-confidence-in-a-nice-guideline-ever-recorded-26-july-2017/ The ME Association petition represents biggest expression of no confidence in a NICE guideline ever recorded]. <ref>http://www.meassociation.org.uk/2017/07/me-association-petition-represents-biggest-expression-of-no-confidence-in-a-nice-guideline-ever-recorded-26-july-2017/ </ref>
Prof. [[David Tuller]] in his investigation stated NICE did not disclose the names of the topic experts to the Countess of Mar and the ME Association and himself were also awaiting for a response to the names.<ref name="tuller201707">{{Cite web | last = Tuller | first = David | authorlink = David Tuller|website = [[Virology blog]] | date = 2017-07-24 | title = Trial by Error: NICE declines to disclose names of experts|url=http://www.virology.ws/2017/07/24/trial-by-error-nice-declines-to-disclose-names-of-experts/}}</ref>


A letter was also sent to the Chief Executive of NICE [https://en.wikipedia.org/wiki/Andrew_Dillon Sir Andrew Dillon] <ref> http://www.meassociation.org.uk/wp-content/uploads/ME-Association-Letter-to-Sir-Andrew-Dillon-24.07.17.pdf </ref>
A letter to the Chief Medical Officer was sent by the MEA.<ref name="MEA-CMO-responds">{{Cite web|url=https://meassociation.org.uk/2017/08/chief-medical-officer-for-england-responds-to-mea-petition-against-nice-guideline-08-august-2017/ | title = Chief Medical Officer for England responds to MEA Petition against NICE guideline {{!}} 08 August 2017 | last = The ME Association | authorlink = The ME Association | date = 2017-08-08|language=en-GB|access-date=2021-11-06}}</ref>


Dr [[David Tuller]] in his investigation stated NICE did not disclose the names of the topic experts to the Countess of Mar and the ME Association and himself were also awaiting for a response to the names <ref> http://www.virology.ws/2017/07/24/trial-by-error-nice-declines-to-disclose-names-of-experts/ </ref>
Dr [[Charles Shepherd]] of the [[ME Association]] wrote to NICE in July 2017 to ask for further information on the team that decided to not review the guidelines but NICE refused.<ref>{{Cite web|url=https://forums.phoenixrising.me/threads/nice-committee-to-review-special-mecfs-issue-of-journal-of-health-psychology.53058/ | title = DISCUSSION: NICE committee to review special #MECFS issue of Journal of Health Psychology | website = Phoenix Rising ME/CFS Forums|language=en-US | date = 2017 | access-date=2021-11-06}}</ref> He followed up with another email in August but this also did not respond to the request asked and stated" remain very disappointed that NICE is unwilling to release the names of members of a group who have been involved in producing what is a very unpopular conclusion regarding the possible updating of the NICE guideline on ME/CFS" and correspondence continued<ref name="MEA-">{{Cite web | first = | last = ME Association | authorlink = ME Association | url =https://meassociation.org.uk/2017/08/nice-guideline-review-we-hear-back-from-nice-about-the-identity-of-topic-experts-13-august-2017/ | title = NICE Guideline Review: We hear back from NICE about the identity of ‘topic experts’ {{!}} 13 August 2017 | date = 2017-08-13|language=en-GB|access-date=2021-11-06}}</ref>


A letter to the Chief Medical Officer was sent by the MEA <ref> http://www.meassociation.org.uk/2017/08/chief-medical-officer-for-england-responds-to-mea-petition-against-nice-guideline-08-august-2017/ </ref>.
Dr [[Diane O'Leary]], of the Kennedy Institute of Ethics at Georgetown University, Washington DC, said at the [[Forward-ME]] parliamentary meeting that the "Guideline as it stands is unethical."<ref name="Lords11Jul2017">{{Cite web | last = Forward-ME | authorlink = Forward-ME | title = Minutes of the Meeting held at the House of Lords. Tuesday 11 July 2017, 2pm | date = 2017-06-11|url=http://www.forward-me.org.uk/11th%20July%202017.htm|url-status=dead|archive-date=2020-01-12|archive-url=http://web.archive.org/web/20200123003228/http://www.forward-me.org.uk/11th%20July%202017.htm}}</ref>


Dr Chalres Shepherd of the MEA wrote to NICE in July 2017 to  ask for further information on the team that decided to not review the guidelines but NICE refused <ref> http://forums.phoenixrising.me/index.php?threads/nice-committee-to-review-special-mecfs-issue-of-journal-of-health-psychology.53058/#post-879730</ref>. He followed up with another email in August but this also did not respond to the request asked and stated " remain very disappointed that NICE is unwilling to release the names of members of a group who have been involved in producing what is a very unpopular conclusion regarding the possible updating of the NICE guideline on ME/CFS" and  correspondence continued  <ref> http://www.meassociation.org.uk/2017/08/nice-guideline-review-we-hear-back-from-nice-about-the-identity-of-topic-experts-13-august-2017/#Update </ref>.
Dr Tuller's own FOI request was rejected on July 31, 2017 for the names of the experts.<ref name="tuller2017-foi">{{Cite web | last = Tuller | first = David | authorlink = David Tuller|website = [[Virology blog]] | date = 2017-07-31 | title = Trial by Error: NICE rejects my FOI request|url=http://www.virology.ws/2017/07/31/trial-by-error-nice-rejects-my-foi-request/}}</ref>


Dr Diane O’Leary, [https://en.wikipedia.org/wiki/Kennedy_Institute_of_Ethics Kennedy Institute of Ethics] of Georgetown University, Washington DC, said to the Forward ME Parliamentary meetingthat "Guideline as it stands is unethical" <ref> http://www.forward-me.org.uk/11th%20July%202017.htm</ref>.
Dr David Tuller also wrote to the NICE Chief Executive, Sir Andrew Dillon, with 15 questions of which none were responded to.<ref name="tuller2017-chief">{{Cite web | last = Tuller | first = David | authorlink = David Tuller|website = [[Virology blog]] | date = 2017-08-14 | title = Trial by Error: My e-mail exchange with NICE Chief Executive|url=http://www.virology.ws/2017/08/14/trial-by-error-my-e-mail-exchange-with-nice-chief-executive/}}</ref>


Dr Tuller's own FOI request was rejected on 31 July 2017 for the names of the experts <ref> http://www.virology.ws/2017/07/31/trial-by-error-nice-rejects-my-foi-request/</ref>.
Dr David Tuller submitted an additional FOI request for the NICE Topic Expert Reports which were provided to him. Tuller examined these and said " this set of comments is the best NICE could drum up in seeking external guidance for this critical review process is deeply worrying."<ref name="tuller2017-experts">{{Cite web | last = Tuller | first = David | authorlink = David Tuller|website = [[Virology blog]] | date = 2017-09-11 | title = Trial by Error: The NICE topic expert reports|url=http://www.virology.ws/2017/09/11/trial-by-error-the-nice-topic-expert-reports}}</ref>


Dr David Tuller also wrote to the NICE Chief Executive, Sir Andrew Dillon, with 15 questions of which none were responded to <ref> http://www.virology.ws/2017/08/14/trial-by-error-my-e-mail-exchange-with-nice-chief-executive/</ref>.
Due to the shock that the NICE guidelines were not reviewed, MEAction supporters raised a parliamentary petition called an Early Day Motion in September to put further pressure on NICE.<ref name="momentum-building">{{Cite web | last = MEAction Network  | authorlink =  The MEAction Network Network | url =http://www.meaction.net/2017/09/15/keep-building-momentum-in-parliament-for-nice-review/ | date = 2017-09-15 | title = Keep building momentum in parliament for NICE review|url-status=dead}}</ref>


Dr David Tuller submitted an additional FOI request for the NICE Topic Expert Reports which were provided to him. Tuller examined these and said " this set of comments is the best NICE could drum up in seeking external guidance for this critical review process is deeply worrying."<ref> http://www.virology.ws/2017/09/11/trial-by-error-the-nice-topic-expert-reports</ref>.
On September 20, 2017, NICE announced that a full review would take place, effectively overturning the previous expert advice not to review the guideline.<ref name="MEA-breaking">{{Cite web|url=https://meassociation.org.uk/2017/09/breaking-news-nice-decides-to-fully-update-its-guideline-on-mecfs-20-september-2017/ | title = Breaking News: NICE decides to Fully Update its guideline on ME/CFS! {{!}} 20 September 2017 | last = ME Association | authorlink = The ME Association | date = 2017-09-20|language=en-GB|access-date=}}</ref><ref name="CG53-why">{{Cite web|url=https://www.nice.org.uk/guidance/cg53 | date = 2017 | title=Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management {{!}} Guidance {{!}} NICE {{!}} Why we made the decision | last = National Institute for Health and Care Excellence|website=[[National Institute for Health and Care Excellence]]|access-date=2021-11-06}}</ref>


Due to the shock that the NICE guidelines were not reviewed, MEAction supporters raised a parliamentary petition called an Early Day Motion (271) in September to put  further pressure on NICE <ref> http://www.meaction.net/2017/09/15/keep-building-momentum-in-parliament-for-nice-review/ </ref>.
''The Times'' newspaper reported on September 24th it as ''Mutiny by ME sufferers forces a climbdown on exercise treatment'' and the article described the patient revolt over  the reassessment of NICE Guidelines was over the validity of the [[PACE trial]].<ref name="times-climbdown">{{Cite web | last = Whipple | first = Tom | authorlink = |website=The Times | date = 2017-09-25 | title = Mutiny by ME sufferers forces a climbdown on exercise treatment|url=https://www.thetimes.co.uk/article/mutiny-by-me-sufferers-forces-a-climbdown-on-exercise-treatment-npj0spq0w}}</ref><ref>{{Cite web|url=https://forums.phoenixrising.me/threads/nice-guideline-on-me-cfs-will-be-updated-sep-20th-2017.54488/ | title = DISCUSSION: NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017) | website = Phoenix Rising ME/CFS Forums|language=en-US | date = 2017-09-20}}</ref>
 
Prof. David Tuller reported on it Trial By Error: NICE Rejects Current Guidance, Plans "Full Update".<ref name="tuller2017-plans">{{Cite web | last = Tuller | first = David | authorlink = David Tuller|website = [[Virology blog]] | date = 2017-09-25 | title = Trial by Error: NICE rejects current guidance plans, full update|url=http://www.virology.ws/2017/09/25/trial-by-error-nice-rejects-current-guidance-plans-full-update/}}</ref>
 
[[Jennifer Brea]] was interviewed in ''The Times'' for the [[Unrest]] documentary in which she criticized the British approach on CBT/GET and the NICE guidelines in the UK as “not an easy place to have ME”.<ref name="lives-frozen">{{Cite news | url=https://www.thetimes.co.uk/article/our-lives-were-frozen-by-chronic-fatigue-syndrome-rdftnm75p | title = Our lives were frozen by chronic fatigue syndrome | last = Whitworth | first = Damian | date = Oct 18, 2017| publisher=The Times|access-date=2021-11-06|archive-url=|archive-date=|language=en}}</ref> ''The Telegraph'' quoted [[Jennifer Brea]] saying, in reference to the NICE guidelines, "I hope the UK will look at the science and update the guidelines."<ref name="telegraph-documentary">{{Cite news | url=https://www.telegraph.co.uk/health-fitness/body/could-documentary-change-way-perceive-chronic-fatigue-syndrome/ | title = Could this documentary change the way we perceive chronic fatigue syndrome? | last = Kelly | first = Guy | date = 2017-10-24|publisher=The Telegraph|access-date=2021-11-06|language=en-GB}}</ref>
 
Prof Tuller also wrote another letter to Sir Andrew Dillon questioning why CFS/ME was also stated under ''Improving Access to Psychological Therapies'' (IAPT) and furthermore in another NICE guideline ''Suspected Neurological Conditions'' where CFS/ME was wrongly categorised as [[medically unexplained symptoms]].<ref name="tuller2017-anotherletter">{{Cite web | last = Tuller | first = David | authorlink = David Tuller|website = [[Virology blog]] | date = 2017-10-07 | title = Trial by Error: Another letter to NICE's Sir Andrew Dillon | url =http://www.virology.ws/2017/10/17/trial-by-error-another-letter-to-nices-sir-andrew-dillon/}}</ref>


==Learn more==
==Learn more==
NICE guideline [NG206] (2021-present)
*[https://www.nice.org.uk/guidance/ng206 <nowiki>Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management uk [ng206]</nowiki>] (online)
*[https://www.nice.org.uk/guidance/ng206/resources/myalgic-encephalomyelitis-or-encephalopathychronic-fatigue-syndrome-diagnosis-and-management-pdf-66143718094021 <nowiki>NICE ME/CFS guideline [NG206]</nowiki>] (PDF)
* [https://www.nice.org.uk/guidance/cg53/evidence/appendix-c-stakeholder-consultation-comments-table-pdf-4602203536 NICE guidelines CG53 stakeholder comments] (PDF) - 2017


==See also==
==See also==
*[[National Health Service|NHS]]
*[[National Institute for Health and Care Excellence|National Institute of Clinical Excellence]]
*[[York Review]]
*[[York Review]]
*[[Centre for Reviews and Dissemination]]


==References==
==References==
{{Reflist}}


[[Category:Definitions]]
[[Category:Definitions]]
[[Category:Clinical guidelines]]
[[Category:Clinical guidelines]]

Latest revision as of 14:03, July 25, 2023

The NICE guidelines are the UK's National Health Service (NHS) diagnostic and treatment guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but are written only for use in England and Wales. In 2018, NICE began appointing a committee of professionals and lay members to NICE guidelines review committee to rewrite the guidelines.[1] The new ME/CFS guidelines were published in October 2021, and include changes to the diagnostic criteria and recommended treatments.[2]

NICE, the National Institute for Health and Care Excellence, is a UK government body that approves and recommends treatments for use within the NHS with the mission to improve health and social care through evidence-based guidance.[3]

NICE Guidelines Review for CFS/ME (2017-2021)
[edit | edit source]

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.[4][5]

Reasons for the update[edit | edit source]

Authors[edit | edit source]

List of the NICE ME/CFS Guideline Development Group (GDG) review panel members:

Stakeholders[edit | edit source]

A large number of organizations registered as stakeholders, and stakeholder meetings began in 2018.[17]

NICE ME/CFS Diagnostic criteria (from Oct 2021)[edit | edit source]

[2]

Suspected ME/CFS[edit | edit source]

All the following symptoms are required for suspected ME/CFS:

Definitions:

  • Activity

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
    Fatigue in ME/CFS typically has the following components:
    • feeling flu-like, especially in the early days of the illness
    • restlessness or feeling 'wired but tired'
    • low energy or a 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
    • rapid loss of muscle strength or 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

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.[2]

Treatments[edit | edit source]

Neurological disease[edit | edit source]

The revised ME/CFS guideline clearly states that ME/CFS is a physical illness:

Be aware that ME/CFS... is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated

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 ICD-10 code G93.3 by the World Health Organization, and by SNOWMED, the GP's computer system.[2]:84

Management, not a cure[edit | edit source]

The new guideline states that no treatments should be regarded as a cure, and that treatments are for symptom management.[2]

No graded exercise therapy[edit | edit source]

The new guideline states that graded exercise therapy or any other approach using fixed increases in physical activity or exercise should not be used.[2]

Criticism and controversies[edit | edit source]

Three month "pause"[edit | edit source]

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.[18]

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.[19]

In the UK news coverage, NICE was accused of "capitulating to vested interests" and "putting patients at risk" over the delays.[20][21] 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]

Patient court case[edit | edit source]

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.[22][23]

Forward-ME response[edit | edit source]

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 or induced illness’."

Forward-ME started that "the recommendations on ‘Energy Management’ will also help people with LongCovid who experience Post-Exertional Malaise (PEM), many of whom have reported that ‘Graded Exercise Therapy’ worsened their condition, and their symptoms were dismissed as anxiety."
"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 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."[24][25]

ME Association response[edit | edit source]

[26]

Invest in ME Research response[edit | edit source]

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.[27]

Action for ME response[edit | edit source]

ME Research UK response[edit | edit source]

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.[28]

25% ME Group response[edit | edit source]

BACME response[edit | edit source]

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.[29]

Royal Colleges response[edit | edit source]

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.[30]

content hidden

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

Prof. David Tuller[edit | edit source]

Other patient groups[edit | edit source]

Physios for ME response[edit | edit source]

[31]

Doctors with M.E. response[edit | edit source]

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.[32]


Individuals doctors gave different responses.

NICE Guideline revision process (2018-2021)[edit | edit source]

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.[4][5]

NICE held a Stakeholders Engagement Workshop on 16 January 2018 and a summary of the day has been produced by the ME Association [33].

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 CBT and GET now to avoid harm to patients[34]. 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.[35]

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.[36][37] ME sufferers led by Graham McPhee from MEAnalysis produced a video to accompany the letter and petition [38].

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.[39]

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" [40].

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 [41]. 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.[1] Some stakeholders were not notified until the night before of the workshop.[42] Others raised some concerns with the stakeholder workshop.[43]

Positive Health magazine reported on What Can We Expect from the Current Review of NICE Guideline CG53 and concluded that the biopsychosocial (psychiatric) model proponents would still try to influence the guidelines to retain the status quo.[44]

NICE guidelines NG206 published 2021[edit | edit source]

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.[2]

NICE Guidelines for CFS/ME - CG53 (2007)[edit | edit source]

The NICE guideline for CFS/ME (CG53) for the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) were published in August 2007. They are used by the NHS and other medical professionals in the UK for diagnosing and treating CFS/ME.

Authors[edit | edit source]

The CFS/ME guideline development group consisted of the following members: Richard Baker, Jessica Bavinton, Esther Crawley, Tony Downes, Richard Eddleston, Ute Elliot, Richard Grünewald, William Hamilton, Judith Harding, Frederick Nye, Amanda O'Donovan, Alastair Santhouse, Julia Smedley, David Vickers, Gillian Walsh, Carol Wilson, Philip Wood, Gary Britton, Stefanie Kuntze, Elizabeth Shaw, Nancy Turnbull, and Tanya Harrison.[45]

NICE Definition (2007-Oct 2021)[edit | edit source]

Healthcare professionals should consider the possibility of CFS/ME if a person has:

  • fatigue with all of the following features:
    • new or had a specific onset (that is, it is not lifelong)
    • persistent and/or recurrent
    • unexplained by other conditions
    • has resulted in a substantial reduction in activity level
    • characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)

and

Healthcare professionals should be aware that the symptoms of CFS/ME fluctuate in severity and may change in nature over time.

Signs and symptoms that can be caused by other serious conditions (‘red flags’) should not be attributed to CFS/ME without consideration of alternative diagnoses or comorbidities. In particular, the following features should be investigated:

  • localising/focal neurological signs
  • signs and symptoms of inflammatory arthritis or connective tissue disease
  • signs and symptoms of cardiorespiratory disease
  • significant weight loss
  • sleep apnea
  • clinically significant lymphadenopathy

A diagnosis should be made after other possible diagnoses have been excluded and the symptoms have persisted for:

  • 4 months in an adult
  • 3 months in a child or young person; the diagnosis should be made or confirmed by a paediatrician

The diagnosis of CFS/ME should be reconsidered if none of the following key features are present:

Criticism and controversy[edit | edit source]

Charities and patient groups condemned the guidelines as "unfit for purpose".

The submissions were from:

Invest in ME Submission[edit | edit source]

ME Association Submission[edit | edit source]

25 Percent ME Group Submission[edit | edit source]

Tymes Trust Submission[edit | edit source]

Tymes Trust November 2006 Submission

Action for ME Submission[edit | edit source]

Agreed statement from all ME Charities[edit | edit source]

An agreed statement was also put out by all ME Charities.[47]

Criticism of the York Review by Professor Hooper[edit | edit source]

The NICE guidelines were based on the evidence presented by the 2005 York Review, produced by the Centre for Reviews and Dissemination (CRD). Prof. Malcolm Hooper submitted written criticism of the York Review to UK Parliament, stating that this supposedly independent review was strongly influenced by the Wessely school's biopsychosocial model. Hooper & Reid published an analysis of the failings in the York Review.

Professor Hooper also submitted written evidence to the House of Commons Select Committee on NICE and the CFS/ME guidelines.[48]

MEActionUK Submission and Reports[edit | edit source]

MEActionUK published their Concerns and Submission about the draft NICE guidelines in October 2006.[49] MEActionUK also published comment on the final draft of the August 2007 guidelines.[50] The failure by NICE to fulfil its remit and the biomedical evidence that NICE ignored in its production is also investigated and reported on.[51][52] MEAction UK have published a number of other reports into the criticism of the NICE guidelines on their website.

NICE Judicial Review Court Case (2009)[edit | edit source]

In 2009, two ME patients launched a court case against NICE and against the newly-published NICE guidelines, leading to a judicial review which was not successful.[53][54]

Move to static list (2013)[edit | edit source]

On September 2013 NICE placed the CFS/ME guidelines CG53 on a static list and confirmed they won't be reviewing them,[55] this then led to protests from patients, researchers and clinicians; and a guideline review was announced in September 2017. There were considerable concerns raised on 2013.

The Countess of Mar and Forward-ME said "We express our extreme concern over this proposal and strongly feel that the guideline must remain on the active list for the following reasons. Medical and scientific advances in relation to ME and CFS are taking place very rapidly." This was a joint letter was signed by a number of ME Charities.[56]

The ME Association opposed the plan to place it on static list and wrote a submission with four reasons including that "Along with most other ME/CFS charities, and people with ME/CFS, we have been unable to endorse the current NICE guideline."[57]

Patients and patient advocacy groups are not in favor of the NICE guidelines and on June 25th 2014 the Forward-ME Group met with Prof Mark Baker, Director of the Centre for Clinical Practice at the National Institute for Health and Clinical Excellence (NICE)]. Professor Baker that the ME/CFS Guideline did not meet patient needs nor those of NICE. He said the Guideline did not promote innovation and only a "passive" intervention such as CBT and Graded Exercise. "There was not much of an evidence base to go on, and in NICE it was evidence that drove guidance."[58]

Doctor Speedy weighs in with Is it NICE guidelines or NONSENSE guidelines? and the ME Association's Dr. Charles Shepherd pointed out during a meeting with Dr. Martin McShane of NHS England "that graded exercise therapy was causing harm to patients and that if a drug was causing harm, guidelines would be reviewed immediately."[59][60]

A FOI request to NICE about the US developments was submitted to NICE in 2016 and they responded to it in 2016 in which they dismissed foreign work on ME/CFS.[61]

NICE 10 year surveillance (2017)[edit | edit source]

In June 2017 stakeholders were advised that NICE would consider reviewing the guidelines.[62] In July NICE stated they decided not to review the guidelines.[63]

A petition to NICE, The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision, gathered over 15,000 signatures.[64]

All patient stakeholders requested that guidelines be reviewed.

  • The MEAction Network's response to NICE stated the NICE guidelines be reviewed and "Given the context of this discrimination, we ask that the updated NICE guidelines be made clearer to account for the limitations of the evidence, patient reports of long term relapse following graded exercise, and the importance of genuine patient choice without reprisal."[65]
  • Forward-ME's response to NICE stated the NICE guidelines be reviewedand included "Because the current guideline directs patients squarely towards behavioral management, it clearly does obstruct patients’ access to biological testing, treatment and support. To avoid this ethical violation, we request that the guideline be revised to present a truthful, neutral picture of the current debate about the nature and management of CFS/ME."[67]
  • Action for ME stated the NICE guidelines be reviewed and "strongly disagrees with the proposal not to update the guideline for the following reasons...There is not, at the present time, a conclusive evidence base for treatments for CFS/M.E., including those recommended in the guideline, such as CBT and/or GET."[69]

The ME Association described the public response to its petition as "The biggest expression of no confidence in a NICE guideline ever recorded".[5]

A letter was also sent to the Chief Executive of NICE Sir Andrew Dillon.[71]

Prof. David Tuller in his investigation stated NICE did not disclose the names of the topic experts to the Countess of Mar and the ME Association and himself were also awaiting for a response to the names.[72]

A letter to the Chief Medical Officer was sent by the MEA.[73]

Dr Charles Shepherd of the ME Association wrote to NICE in July 2017 to ask for further information on the team that decided to not review the guidelines but NICE refused.[74] He followed up with another email in August but this also did not respond to the request asked and stated" remain very disappointed that NICE is unwilling to release the names of members of a group who have been involved in producing what is a very unpopular conclusion regarding the possible updating of the NICE guideline on ME/CFS" and correspondence continued[75]

Dr Diane O'Leary, of the Kennedy Institute of Ethics at Georgetown University, Washington DC, said at the Forward-ME parliamentary meeting that the "Guideline as it stands is unethical."[76]

Dr Tuller's own FOI request was rejected on July 31, 2017 for the names of the experts.[77]

Dr David Tuller also wrote to the NICE Chief Executive, Sir Andrew Dillon, with 15 questions of which none were responded to.[78]

Dr David Tuller submitted an additional FOI request for the NICE Topic Expert Reports which were provided to him. Tuller examined these and said " this set of comments is the best NICE could drum up in seeking external guidance for this critical review process is deeply worrying."[79]

Due to the shock that the NICE guidelines were not reviewed, MEAction supporters raised a parliamentary petition called an Early Day Motion in September to put further pressure on NICE.[80]

On September 20, 2017, NICE announced that a full review would take place, effectively overturning the previous expert advice not to review the guideline.[81][82]

The Times newspaper reported on September 24th it as Mutiny by ME sufferers forces a climbdown on exercise treatment and the article described the patient revolt over the reassessment of NICE Guidelines was over the validity of the PACE trial.[83][84]

Prof. David Tuller reported on it Trial By Error: NICE Rejects Current Guidance, Plans "Full Update".[85]

Jennifer Brea was interviewed in The Times for the Unrest documentary in which she criticized the British approach on CBT/GET and the NICE guidelines in the UK as “not an easy place to have ME”.[86] The Telegraph quoted Jennifer Brea saying, in reference to the NICE guidelines, "I hope the UK will look at the science and update the guidelines."[87]

Prof Tuller also wrote another letter to Sir Andrew Dillon questioning why CFS/ME was also stated under Improving Access to Psychological Therapies (IAPT) and furthermore in another NICE guideline Suspected Neurological Conditions where CFS/ME was wrongly categorised as medically unexplained symptoms.[88]

Learn more[edit | edit source]

NICE guideline [NG206] (2021-present)

See also[edit | edit source]

References[edit | edit source]

  1. 1.0 1.1 "Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management GID-NG10091". National Institute for Health and Care Excellence. June 27, 2018.
  2. 2.0 2.1 2.2 2.3 2.4 2.5 2.6 2.7 "Myalgic encephalomyelitis (or encephalopathy)/Chronic fatigue syndrome: diagnosis and management NICE guideline [NG206]". National Institute for Health and Care Excellence. October 29, 2021.
  3. "NICE | The National Institute for Health and Care Excellence". National Institute for Health and Care Excellence. Retrieved January 13, 2019.
  4. 4.0 4.1 4.2 ME Association (July 21, 2017). "MRA Submission to NICE re: Guideline Revise | 21 July 2017" (PDF).
  5. 5.0 5.1 5.2 The ME Association (July 26, 2017). "ME Association petition represents biggest expression of no confidence in a NICE guideline ever recorded". Retrieved October 30, 2021.
  6. The ME Association (December 4, 2017). "Forward-ME Meeting with Professor Mark Baker, Director of Guidelines, NICE | 04 December 2017 | The ME Association". The ME Association. Retrieved October 30, 2021.
  7. Institute of Medicine (2015), Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, Washington, DC: The National Academies Press
  8. Smith ME, Nelson HD, Haney E, Pappas M, Daeges M, Wasson N, McDonagh M (December 2014). "Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome No. 219". Evidence Report/Technology Assessment. Agency for Healthcare Research and Quality (US): 1–433. doi:10.23970/AHRQEPCERTA219. PMID 30313001.
  9. Carruthers, BM; van de Sande, MI; De Meirleir, KL; Klimas, NG; Broderick, G; Mitchell, T; Staines, D; Powles, ACP; Speight, N; Vallings, R; Bateman, L; Bell, DS; Carlo-Stella, N; Chia, J; Darragh, A; Gerken, A; Jo, D; Lewis, DP; Light, AR; Light, KC; Marshall-Gradisnik, S; McLaren-Howard, J; Mena, I; Miwa, K; Murovska, M; Stevens, SR (2012), Myalgic encephalomyelitis: Adult & Paediatric: International Consensus Primer for Medical Practitioners (PDF), ISBN 978-0-9739335-3-6
  10. 10.0 10.1 "IOM 2015 Diagnostic Criteria | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 27, 2021. Retrieved February 25, 2021.
  11. The ME Association (April 3, 2019). "Forward ME and Oxford Brookes University Announce Results of Patient Survey on CBT and GET in ME/CFS | 03 April 2019 | The ME Association". The ME Association. Retrieved November 6, 2021.
  12. The ME Association (May 2015). "ME/CFS Illness Management Survey Results - "No decisions about me without me" Part 1" (PDF). The ME Association.
  13. Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS) (February 27, 2019). "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" (PDF).
  14. CureME (February 6, 2019). "We're delighted to announce that our Research Fellow & Biobank Coordinator Caroline Kingdon has also been appointed to the NICE #MECFS Guideline Committee.
    While this is yet to be announced on NICE's website, we are sharing the news here now as meetings are beginning.
    #pwME pic.twitter.com/OH9JPTMARo pic"
    . Twitter. Retrieved February 6, 2019.
  15. NICE (October 16, 2018). "Committee member list | NICE CG53 CFS/ME guidance update". nice.org.uk. Retrieved October 20, 2018.
  16. Shepherd, Charles (November 9, 2018). "ME Association Statement re: NICE ME/CFS Guideline Review and Committee Appointments | 09 November 2018". The ME Association. Retrieved November 15, 2018.
  17. NICE (May 24, 2018). "Stakeholder Engagement Meeting Interim Findings | NICE CFS/ME guidelines review". nice.org.uk.
  18. Grover, Natalie (August 17, 2021). "UK health standards body delays new ME guidance in therapy row". The Guardian.
  19. "Doctors with M.E. : Medical unlawfulness and the NICE ME/CFS Guideline delay". Sense About Science Blog. August 18, 2021. Retrieved December 9, 2021.
  20. "Health watchdog accused of 'capitulating to vested interests' over chronic fatigue as it delays new advice". The Independent. August 17, 2021. Retrieved December 9, 2021.
  21. "Delays to ME guidelines 'are putting patients at risk'". The Times. August 2021. ISSN 0140-0460. Retrieved December 9, 2021.
  22. "NICE is facing a legal challenge over its ME guidelines delay". The Canary. October 2, 2021. Retrieved December 9, 2021.
  23. "Peter Todd". Twitter. Retrieved December 9, 2021.
  24. Forward-ME (October 29, 2021). "NEW NICE GUIDELINES ON ME: FORWARD-ME STATEMENT & MEDIA SUPPORT - Oct 29th 2021". Retrieved October 29, 2021.
  25. Forward-ME (October 29, 2021). "NICE Publishes new Guideline on ME/CFS, driving major improvements in care". Retrieved October 29, 2021.
  26. The ME Association (October 29, 2021). "The new NICE guideline on ME/CFS is published!".
  27. Invest in ME Research (October 29, 2021). "NICE GUIDELINES - TAKING US FORWARD TO 2007".
  28. ME Research UK (October 29, 2021). "Our response to the updated NICE guideline".
  29. British Association for CFS/ME (October 2021). "Press Statement NICE Guideline publication Oct 2021".
  30. "Royal Colleges Joint Statement". Royal College of Physicians. October 29, 2021.
  31. Physios for ME (October 2021). "NICE Publish New Guidelines".
  32. Doctors with M.E. (November 1, 2021). "NICE 2021: A Triumph of Science over Discrimination".
  33. "Reviewing the NICE guideline for ME/CFS: The Stakeholders Engagement Workshop – A Report by Dr Charles Shepherd". The ME Association. January 17, 2018. Retrieved October 30, 2021.
  34. Invest in ME Research (January 2018). "Correspondence with Professor Mark Baker - Centre for Guidelines Director, National Institute for Health and Care Excellence".
  35. Spoonseeker (January 28, 2018). "An Offer You Can't Refuse". spoonseekerdotcom. Retrieved October 30, 2021.
  36. "Graham's finished letter to NICE January 2018". Science for ME. January 2018.
  37. The ME Association (2017). "The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision". Change.org. Retrieved October 30, 2021.
  38. MEAnalysis (January 14, 2018). "The PACE trial: A Short Explanation Part 3: Why It Matters". YouTube.
  39. Brown, Robin (2017). "NICE: Stop Harming ME/CFS patients - take CBT and GET out of the CFS guidelines now". Change.org. Retrieved October 30, 2021.
  40. "Chronic fatigue syndrome treatment 'should be withdrawn'". BBC Newsbeat. May 8, 2018.
  41. "Guideline scope (draft)". National Institute for Health and Care Excellence. 2018.
  42. Invest in ME Research (May 25, 2018). "NICE GUIDELINES FOR MYALGIC ENCEPHALOMYELITIS (ME)" (PDF).
  43. ""Listened to but were we heard?" The NICE guidelines scoping workshop". #MEAction Network. May 31, 2018. Retrieved October 30, 2021.
  44. "What Can We Expect from the Current Review of NICE Guideline CG53". Positive Health Online. Retrieved October 30, 2021.
  45. "GDG Members' Declaration of Interests". National Institute for Health and Care Excellence.
  46. "NICE Guidelines for CFS/ME: diagnosis and [CG53]".
  47. "NICE Guidelines Agreed Statement by Charities". 25 Percent ME Group.
  48. "Select Committee on Health Written Evidence | Evidence submitted by Professor Malcolm Hooper (NICE 07)". Parliament UK. 2007.
  49. "Concerns re: NICE" (PDF). MEActionUK. 2006.
  50. "Comments on the NICE guidelines" (PDF). MEActionUK. 2007.
  51. "Facts re: GET" (PDF). MEActionUK. 2008.
  52. "Immunological and Neuroendocrine evidence" (PDF). MEActionUK. 2008.
  53. Invest in ME Research (March 2009), Post-Judicial Review Comment
  54. Doctors with M.E. (November 1, 2021). "NICE 2021: A Triumph of Science over Discrimination Post". 2009: Quasi-extrajudicial termination of Judicial Review, leveraging unusually aggressive and tenuous grounds against both plaintiff and their lawyer to ensure process could not proceed
  55. The ME Association (September 26, 2013). "NICE confirm they won't be reviewing their ME/CFS Guideline any time soon, unless... | 26 September 2013". Retrieved December 9, 2021.
  56. The ME Association (October 28, 2013). "Countess of Mar group condemn NICE plan to do nothing with ME/CFS Guideline review | 28 October 2013". The ME Association. Retrieved December 9, 2021.
  57. The ME Association (October 23, 2013). "MEA opposes plan to put review of NICE ME/CFS Guideline on hold | 23 October 2013". The ME Association. Retrieved December 9, 2021.
  58. Welsh Association of ME & CFS Support (July 2014). "NICE admits CFS/ME guidelines don't meet the needs of patients". On June 25th 2014 the Forward ME Group met with Prof Mark Baker, Director of the Centre for Clinical Practice at the National Institute for Health and Clinical Excellence (NICE).
  59. "Is it NICE guidelines or NONSENSE guidelines?". September 2007.
  60. The MEAction Network (October 10, 2015). "Push to change ME/CFS NICE guideline". The MEAction Network. Retrieved November 6, 2021.
  61. The ME Association (October 24, 2016). "NICE takes a dim view of foreign research into ME/CFS | Robin Ellis Freedom of Information request | 24 October 2016". The ME Association. Retrieved December 9, 2021.
  62. ME Association (June 24, 2017). "The NICE guideline saga: how we got to where we are now | 24 June 2017".
  63. ME Association (July 5, 2017). "Breaking news: ME Association has heard back from NICE about the guideline review and it's not good news | 5 Jul 2017".
  64. "Petition: the NICE guideline for CFS/ME is unfit for purpose and needs a complete revision". Change.org. 2017.
  65. MEAction (July 23, 2017). "NICE response 2017".
  66. Invest in ME Research (July 23, 2017). "Comments form from Invest in ME Research 23-7-2017" (PDF).
  67. Forward-ME (2017). "10 year surveillance report (2017)" (PDF).
  68. Hope 4 ME and Fibro NI (July 2017). "NI Comments form 2" (PDF).
  69. Action for ME (2017). "NICE consultation response" (PDF).
  70. Tymes Trust (July 2017). "Tymes Trust NICE 2017" (PDF).
  71. The ME Association (July 24, 2017). "Letter to Sir Andrew Dillon 24.07.17" (PDF). The ME Association.
  72. Tuller, David (July 24, 2017). "Trial by Error: NICE declines to disclose names of experts". Virology blog.
  73. The ME Association (August 8, 2017). "Chief Medical Officer for England responds to MEA Petition against NICE guideline | 08 August 2017". Retrieved November 6, 2021.
  74. "DISCUSSION: NICE committee to review special #MECFS issue of Journal of Health Psychology". Phoenix Rising ME/CFS Forums. 2017. Retrieved November 6, 2021.
  75. ME Association (August 13, 2017). "NICE Guideline Review: We hear back from NICE about the identity of 'topic experts' | 13 August 2017". Retrieved November 6, 2021.
  76. Forward-ME (June 11, 2017). "Minutes of the Meeting held at the House of Lords. Tuesday 11 July 2017, 2pm". Archived from the original on January 12, 2020.
  77. Tuller, David (July 31, 2017). "Trial by Error: NICE rejects my FOI request". Virology blog.
  78. Tuller, David (August 14, 2017). "Trial by Error: My e-mail exchange with NICE Chief Executive". Virology blog.
  79. Tuller, David (September 11, 2017). "Trial by Error: The NICE topic expert reports". Virology blog.
  80. MEAction Network (September 15, 2017). "Keep building momentum in parliament for NICE review".
  81. ME Association (September 20, 2017). "Breaking News: NICE decides to Fully Update its guideline on ME/CFS! | 20 September 2017".
  82. National Institute for Health and Care Excellence (2017). "Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management | Guidance | NICE | Why we made the decision". National Institute for Health and Care Excellence. Retrieved November 6, 2021.
  83. Whipple, Tom (September 25, 2017). "Mutiny by ME sufferers forces a climbdown on exercise treatment". The Times.
  84. "DISCUSSION: NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)". Phoenix Rising ME/CFS Forums. September 20, 2017.
  85. Tuller, David (September 25, 2017). "Trial by Error: NICE rejects current guidance plans, full update". Virology blog.
  86. Whitworth, Damian (October 18, 2017). "Our lives were frozen by chronic fatigue syndrome". The Times. Retrieved November 6, 2021.
  87. Kelly, Guy (October 24, 2017). "Could this documentary change the way we perceive chronic fatigue syndrome?". The Telegraph. Retrieved November 6, 2021.
  88. Tuller, David (October 7, 2017). "Trial by Error: Another letter to NICE's Sir Andrew Dillon". Virology blog.