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 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
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
Chat to NICE ME/CFS guideline committee members
On Tuesday 30th November at 5pm, we’re holding a community Q&A, and will be joined by two of the NICE committee members, who have spent almost 3 years working on the new ME/CFS guideline.
UK Parliamentary Group to discuss new ME/CFS guideline
The next meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME) will take place from 2 – 3 pm on 24 November 2021. Email your MP asking them to attend, and help to ensure the new ME/CFS guideline is implemented. Find their contact details at: https://members.parliament.uk/FindYourMP This meeting will focus on the
Tell your Doctor that GET is gone
The updated NICE guideline on ME/CFS contains substantial changes that alter the treatment and management of people with ME in England and Wales*. We need your help to tell doctors and other medical staff that the recommended treatments for people with ME have changed. We want to get the message out that there are new
#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