NICE
The ME/CFS guideline published by the National Institute for Health and Care Excellence (NICE) defines the treatment that people with ME receive. A new guideline published in October 2021 transforms the care people with ME can expect to receive. Find out more below.
In England and Wales the NHS follows the NICE guidelines, and in Scotland and Northern Ireland they are the primary source used by health professionals. In reality, NICE guidelines have an impact on how people with ME are treated across the world.
The new guideline, published October 2021, transforms the care people with ME can expect to receive in the UK. The major change is the removal of graded exercise therapy as a treatment, and the recommendation of energy management techniques that help a person with ME to stay within their energy limits.
There are many more improvements too: from diagnosis; to recommendations for the severely ill; to children and young people; to aids and adaptations. This guideline could kickstart an entirely new care experience for people with ME in the UK.
Now, it needs to be implemented.
Our Aims
To completely remove GET from all NHS treatment. It’s still being used but hidden behind new names.
For the updated 2021 guideline to be implemented throughout the NHS
To improve care and treatment for people with ME, especially the severe and very severe, and end stigma and lack of support.
#MEAction UK & NICE
We:
Repeatedly presented NICE with evidence proving the harm being done by GET
Campaigned to end harmful treatments
Responded to consultations with detailed reviews of the research base around ME
Campaigned to ensure that NICE takes appropriate action to address the conflicts of interest of certain members of the guideline development committee
Surveyed UK people with ME evidencing the failings of current specialist services
Coordinated grassroots actions giving people with ME a voice in the NICE process
NICE PUBLISH CLINICAL GUIDANCE ON CFS/ME
NICE published clinical guidance on diagnosis and management of ME/CFS
NICE refuses to update guideline
NICE took the initial decision to keep their CFS/ME guideline on the static list meaning the guideline would not be updated.
PUBLIC PRESSURE FORCES NICE TO AGREE TO UPDATE GUIDELINE
#MEAction UK submitted a detailed response to the decision not to update the guideline, demanding it be fully rewritten. Under pressure from MPs (EDM271) and every patient organisation in the UK, NICE agreed to fully update the guidance
STAKEHOLDER ENGAGEMENT WORKSHOPS
After the initial draft scope for the new guideline is published, NICE held two workshops in 2018 looking at the draft scope for the new guideline on ME/CFS. #MEAction UK sent two representatives, with a key aim of ensuring objective outcomes would be used by the committee when assessing evidence.
#MEACTION U.K. RESPONDS TO THE SECOND DRAFT SCOPE
After publishing an initial reaction, #MEAction UK volunteers write and submit a comprehensive 30 page stakeholder response to the second draft scope, addressing in detail the inadequacy of the document.
THE FINAL SCOPE IS PUBLISHED
Having been revised based on stakeholder feedback, the final scoping document is published, defining what will be covered by the updated guideline #MEAction UK analyses the improvements, inaccuracies and omissions in this final document.
DEEP CONCERNS AT NICE COMMITTEE CONFLICTS OF INTEREST
NICE announced membership of the committee who would rewrite the ME/CFS guideline, creating deep concern at some members’ conflicts of interest. Coordinated by #MEAction UK, 2000 people with ME, carers and allies wrote to NICE outlining their concerns.
CHRISTMAS POSTCARDS TO NICE
People with ME, their carers, family, friends and allies from across the UK send postcards to NICE saying:
"All I want for Christmas is Science not Stigma"
SURVEY DEMONSTRATES SERIOUS HARM FROM GET AND CBT
In response to a request from the NICE committee, the Forward ME Group, including #MEAction UK, commissioned a survey by Oxford Brookes University. The results demonstrated that graded exercise therapy (GET) and cognitive behavioural therapy (CBT) have caused serious harm, with over two thirds of respondents reporting deterioration in their physical health after undergoing GET. Read our lay summary.
NICE DRAG THEIR FEET ON HARM CAUSED BY GET
#MEAction UK continued working to hold NICE to account and urged them to take action now to prevent the harm of hundreds more before the updated guideline is published.
NICE CALLS FOR EVIDENCE
NICE's ME/CFS guideline committee called for evidence on management strategies that are adopted while someone is being assessed for a diagnosis of ME/CFS, methods of monitoring and/or reviewing people with a diagnosis of ME/CFS and the experience of people who have had interventions for ME/CFS.
#MEAction UK submitted a detailed response and launched a survey investigating people with ME’s experiences of services in the UK
SURVEY FINDS U.K. SPECIALIST M.E. SERVICES NOT FIT FOR PURPOSE
#MEAction UK survey of 1900 people with ME found that UK specialist ME services are not fit for purpose. 83.3% of respondents felt their local service should be adapted or closed and rebuilt with patient input. The results were submitted to NICE as part of our response to their call for evidence.
NICE GUIDELINE PUBLICATION DELAYED TO DECEMBER 2020
The publication date for the ME/CFS guideline is delayed from October 2020 to December 2020.
NICE SUSPEND ALL WORK ON GUIDELINE DUE TO COVID-19
Work on updating the ME/CFS guideline is delayed again due to the coronavirus pandemic. Despite this, NICE refuses to add a warning to current guideline - in place since 2007 - about graded exercise therapy.
THOUSANDS SAY DO NO HARM – #TAKEMESERIOUSLY
Thousands add their name to a 6-metre-long card demanding NICE take ME seriously, and issue a warning on graded exercise therapy. #MEAction UK warns NICE of an oncoming wave of people with post-COVID symptoms that could develop into ME
NICE MAKES STATEMENT ON GET AND POST-COVID FATIGUE
NICE added a statement to the ME/CFS guideline clarifying that the recommendation of graded exercise therapy for ME should not be assumed to apply to people with fatigue post-COVID. While this was a welcome step, it did not go far enough.
NICE LAUNCH DRAFT ME/CFS GUIDELINE CONSULTATION
This could change the healthcare offered to everyone with ME in the UK, and have implications for the care of long COVID patients too.
OPEN LETTER TO THE SECRETARY OF STATE FOR HEALTH AND SOCIAL CARE
Following the NICE statement, #MEAction UK redoubled its efforts to stop people with ME being prescribed GET. We sent an open letter to Matt Hancock MP asking him to ensure that all government advice for people with ME, and those at risk of developing ME post-COVID, warns of the harm from GET. We added to the pressure with a campaign that resulted in over 240 MPs being emailed by their constituents asking them to also take action and contact Matt Hancock.
#MEACTION U.K. SUBMITS COMPREHENSIVE RESPONSE TO NICE CONSULTATION
#MEAction UK compiled a solid and articulate response to the NICE draft ME/CFS Guideline.
Thanks are not only due to the dedicated team who drafted the response but also to EVERYONE who contributed: whether that was by joining one of our community calls, completing our social media polls, engaging in discussion online, emailing your comments to us or directly to NICE or by sharing our posts about the consultation.
GUIDELINE PUBLICATION DELAYED AGAIN
Stakeholders receive an email stating: "Because of the large
number of comments received during consultation on the
ME/CFS guideline, and the additional work needed to respond
to them fully, the publication date has changed. The guideline
will now be published on 18th August 2021."
ROYAL COLLEGES REFUSE TO IMPLEMENT GUIDLINE. NICE CAPITULATE AND DELAY PUBLICATION
On 18th August 2021, NICE were due to publish their newly developed ME/CFS guideline. It would have transformed the care people with ME receive in the UK and abroad.
But with less than 24 hours to go, NICE pulled out of publishing it under pressure from those with vested interests.
NICE must reverse this decision, and take the courageous and ethical step to publish this guideline in its current form.
The power and beliefs of a few must not stand in the way of evidence.
15,000+ SIGN PETITION TO URGE NICE TO PUBLISH GUIDELINE
In under a week, over 15,000 people sign #MEAction UK's petition urging NICE to publish the guideline in it's current form.
Read and sign the petition here
PETITION WITH OVER 21,500 SIGNATURES HANDED TO NICE
The petition calling on NICE to publish the ME/CFS guideline immediately reaches over 21,500 signatures.
#MEAction advocates take printed copy with every single name to hand in to NICE's Director of Finance, Strategy & Transformation.
NICE HOLD ROUNDTABLE TO DISCUSS CONCERNS ABOUT THE GUIDELINE
On the 18th October, representatives from ME organisations, some of the UK's medical Royal Colleges, and NICE sat down to discuss concerns raised by the Royal Colleges about the final guideline. Janet Sylvester, who attended on behalf of #MEAction UK, said "This was a positive meeting. The discussion put to rest concerns, ensuring this guideline can be effectively implemented."NICE PUBLISHES FINAL ME/CFS GUIDELINE
After the successful roundtable, NICE publishes the final guideline, removing the recommendation of graded exercise therapy for good, and signficantly improving many other areas of diagnosis, care and treatment recommendations. Read our reaction here.