The NICE Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management guideline is in development, with an expected publication date of 21 April 2021.
The NICE website explains that individuals can comment on the Draft Guidance. See their website, as this must be done via their comments form, and you need to be a registered stakeholder. Or, contact the stakeholder organisation that most closely represents your interests and pass your comments to them. The consultation closes on 22 December 2020 at 5pm.
Become involved in the response to the Draft of the NICE Guideline via national M.E. Charities. The Worcestershire M.E. Support Group closed at the end of 2016, and the Social Group does not have membership so we are now unable to contact people with a diagnosis of M.E. in Worcestershire. To give you an idea of the local situation, in 2003/2004 the Worcestershire ME Support Group received members’ helpful and unhelpful responses. The information is taken from completed membership questionnaires in the year ending August 2004.
Members' helpful and unhelpful responses (pdf).
The ME Association (MEA) gave their NICE Press Statement & Media Coverage of New Clinical Guideline on ME/CFS, including links to media articles, and the MEA’s Initial Reaction -
“We are very pleased to find that NICE has addressed many of the defects in the current guideline on ME/CFS.
“In particular, we welcome the decision to no longer recommend graded exercise therapy (GET) as a treatment for ME/CFS and the decision to give heightened recognition to the many problems faced by people with severe ME/CFS.
“We do, however, have concerns about some of the diagnostic recommendations. And there is a need to provide far more information on symptom management that is specific to ME/CFS.
“As NICE is now preparing a rapid guideline on Long COVID, a post viral syndrome that has a number of symptoms that overlap with ME/CFS, we hope that the new ME/CFS guidance on activity and energy management will also be used to help people with Long COVID.
“We will be consulting with our members on the draft and sending in a detailed stakeholder response to NICE in December.”
The MEA asked: What do you think about the new NICE Clinical Guideline on ME/CFS?
The MEA explained that the draft of the new NICE clinical guideline on ME/CFS is now available to read as part of the stakeholder consultation, and gave details on how to take part.
Please take your time to read the draft clinical guideline and then pass on your comments - preferably in very short statements with a reference to which part of the guideline you are commenting on. You can do so by:
- Completing the MEA Monthly Poll located to the right of the MEA website: What is your overall opinion of the draft NICE guideline on ME/CFS?
- Taking part in the discussions about the draft guideline on MEA Facebook,
- Contacting us by email at: email@example.com
Action for ME (AfME) announced - Draft NICE guideline for M.E.: have your say.
The National Institute for Health and Care Excellence (NICE) has published its draft guidance on the diagnosis, treatment and management of M.E./CFS. Updated guidance has been long-awaited by people with M.E., advocates and charities, including Action for M.E., who have campaigned hard for much-needed changes.
We are reviewing the guideline in detail, as a priority. We are hugely encouraged to note the following, so far:
- "Do not offer people with ME/CFS any therapy based on physical activity or exercise as a treatment or cure for ME/CFS [or] any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy.”
- "Only offer cognitive behavioural therapy (CBT) to people with ME/CFS who would like to use it to support them in managing their symptoms of ME/CFS and to reduce the psychological distress associated with having a chronic illness. Do not offer CBT as a treatment or cure for ME/CFS."
- "Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness."
- Publishing, as soon as possible, short summaries of key chapters so those less able to read long documents have a clear overview of what the draft guideline says
- sharing a survey to gather views on the guidance; we will link to this ASAP on our website and social media, and in InterAction, our membership magazine, for those not online
- using your views, along with data from our Big Survey last year, to inform our response to NICE, by their deadline of Tuesday 22 December.
Invest in ME Research issued a press release on 'NICE Draft Updated Guideline on the Diagnosis and Management of Myalgic Encephalomyelitis (ME or ME/CFS)'. Invest in ME Research stated that until the charity is able to examine the full draft guidelines document their comments relate only to the NICE press release.
ME Research UK (MERUK), gave a NICE Guideline Update - Press Release.
MERUK explained that the NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS
NICE has today (10 November 2020) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
It covers the identification and assessment of ME/CFS before and after diagnosis, its management, monitoring and review, information, education, and support for people with suspected or diagnosed ME/CFS and their families and carers, as well as information, education and support for health and social care professionals.
Last month, on 8 October, the MEA gave a Statement on the NICE clinical guideline for ME/CFS and the NICE guideline for Post/Long Covid-19.
This detailed article included sections on - Explanation of Post/Long Covid-19 and ME/CFS; NICE Clinical Guidelines on ME/CFS and Post/Long Covid-19; and Illness Management
Earlier, in August - ME Research UK’s article - Forward-ME call to NICE.
Building upon previous submissions to NICE in connection with NICE’s on-going ME/CFS Guideline review which included the ME Research UK and ME Association-funded patient survey on the efficacy and effects of Graded Exercise Therapy and Cognitive Behavioural Therapy, the Forward-ME Group have contacted NICE as follows:
As charities supporting people with M.E. we have been actively campaigning for NICE to remove the recommendation of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) in the guideline for M.E./CFS.
Patient surveys conducted by charities and groups including Forward-ME have repeatedly shown the harm that can be caused by these therapies, even when delivered by an M.E. Specialist. While this guideline is under review we are calling for NICE to remove the recommendation and add a health warning stating the risks associated with GET and CBT.
One of the main considerations during the guideline review is the evidence for GET in particular. It is therefore appropriate that they take this action in response to the legitimate questions and concerns that have been raised over its safety and effectiveness.
For future updates: see - UK National ME/CFS/Fibromyalgia Organisations., and M.E. Research Organisations.
Take care, and stay safe everyone.
• Action for ME • A.P.P.G • Coronavirus (COVID 19) • Forward ME • M.E. Association • MERUK • MP • N.I.C.E. • Research • Worcestershire M.E. Social Group • Worcestershire M.E. Support Group