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!
===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 ācapitulating to vested interestsā 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 āare putting patients at riskā | 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 toĀ inappropriate child protection orders, and threatened with the removal of their children, inĀ the belief that the parents had caused a [[Fabricated Induced Illness|āfabricatedĀ or induced illnessā]]." Forward-ME started that "the recommendations on āEnergy Managementā 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|āGraded Exercise Therapyā]] worsened theirĀ condition, and their symptoms were dismissed as anxiety."<br />"This recommendation is aĀ clear break from the past. Previously, people with ME were offered āGraded Exercise Therapyā (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/CFSĀ was due to be published in August, but NICE āpausedā the release following interventionĀ from some clinicians. After a round-table with representatives from the āRoyal Collegesā and ME charities,Ā NICE is nowĀ 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 peopleās 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 peopleās 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, peopleās 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.
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