Anonymous
Not logged in
Talk
Contributions
Create account
Log in
Search
Editing
NICE guidelines
(section)
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Namespaces
Page
Discussion
More
More
Page actions
Read
Edit
Edit source
History
Warning:
You are not logged in. Your IP address will be publicly visible if you make any edits. If you
log in
or
create an account
, your edits will be attributed to your username, along with other benefits.
Anti-spam check. Do
not
fill this in!
===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 Β£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 = 1β433 | 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 - βNo decisions about me without meβ 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
Summary:
Please make sure your edits are consistent with
MEpedia's guidelines
.
By saving changes, you agree to the
Terms of use
, and you irrevocably agree to release your contribution under the
CC BY-SA 3.0 License
and the
GFDL
. You agree that a hyperlink or URL is sufficient attribution under the Creative Commons license.
Cancel
Editing help
(opens in new window)
This page is a member of 2 hidden categories:
Category:All articles with unsourced statements
Category:Articles with unsourced statements from 2021
Navigation
Navigation
Skip to content
Main page
Browse
Become an editor
Random page
Popular pages
Abbreviations
Glossary
About MEpedia
Links for editors
Contents
Guidelines
Recent changes
Pages in need
Search
Help
Wiki tools
Wiki tools
Special pages
Page tools
Page tools
User page tools
More
What links here
Related changes
Page information
Page logs