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 transformative new guideline was due to be published on the 18th August 2021, but was instead delayed at the 11th hour. Find out more below.

In England and Wales the NHS is obliged to follow 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.

We have worked to create meaningful change by engaging in the formal consultation procedures NICE undertakes while updating a guideline, and by adding external pressure to demand the most pressing changes for people with ME are made in the shortest possible time. At every stage, we have put the voices of people with ME front and centre – in every decision and action we take.

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.

Individuals with ME, and our allies, deserve a voice in this process.

NICE must reverse this decision, and take the courageous and ethical step to publish this guideline in its current form.

Our aims

Stop the harm

To end the use of harmful graded exercise therapy (GET) now, and ensure it is advised against in the new guideline.

Evidence-Based Guidelines

For NICE to use all of the latest evidence when updating the guideline on ME.

improved care

To secure recommendations on care and treatment for people with ME that help not harm, and end the stigma and lack of support that is currently the norm.

GET INVOLVED

To find out how you can help with our NICE campaign, contact us today or follow us on social media to see regular updates.

Latest News About NICE

Statement from Forward-ME on NICE Roundtable

After NICE held its roundtable to discuss the new ME/CFS guideline, Forward-ME (which #MEAction UK is a member of) have produced the below statement. Clinician and Patient Support Confirmed for new NICE Guideline on ME/CFS. On Monday, Forward-ME and member charities attended a roundtable to review the new ‘NICE guideline on ME/CFS’ with representatives from

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“The treatment of ME has been Dickensian” – NICE’s roundtable on the ME/CFS guideline

After NICE’s roundtable, Janet Sylvester tells us: “I felt this was a positive meeting. There were large areas of agreement from all attendees, including all acknowledging the terrible experiences people with ME have had to endure. Together, the representatives from ME patient organisations were able to strongly get across the reality for people living with ME. I’m optimistic the guidelines will be published.”

Read More »

#MEAction UK and NICE

We have:

  • Repeatedly presented NICE with evidence proving the harm being done by GET
  • Campaigned to end harmful treatments now
  • 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

Timeline

August, 2007

NICE PUBLISH CLINICAL GUIDANCE ON CFS/ME

NICE published clinical guidance on diagnosis and management of ME/CFS.

August, 2007

July, 2017

NICE decides not to update CFS/ME guideline

NICE took the initial decision to keep their CFS/ME guideline on the static list meaning the guideline would not be updated.

July, 2017

September, 2017

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.

September, 2017

May, 2018

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.

May, 2018

July, 2018

#MEAction UK 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. 

July, 2018

October, 2018

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. 

October, 2018

November 2018

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.

November 2018

January, 2019

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.

January, 2019

August, 2019

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.

August, 2019

September, 2019

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.

September, 2019

October, 2019

Survey Finds UK Specialist Me 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.

October, 2019

October 2019

NICE Guideline Publication Delayed To December 2020

The publication date for the ME/CFS guideline is delayed from October 2020 to December 2020. 

October 2019

March, 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.

March, 2020

April, 2020

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.

April, 2020

July, 2020

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.

July, 2020

July, 2020

Open Letter to 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.

July, 2020

November, 2020

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.

Find out how to get involved at meaction.net/nice

November, 2020

December, 2020

#MEAction UK submits comprehensive response to NICE consultation

#MEAction UK has 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.

Read about #MEAction UK’s response here.

December, 2020

March, 2021

Guideline publication delayed again

Stakeholders receive and 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 publish on 18th August 2021.

March, 2021

August 2021

Royal Colleges refuse to implement guideline. 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. 

August 2021

August 2021

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.

August 2021
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