United Kingdom News
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Apply to join the UK’s ME/CFS priority setting workshops
Over 2,000 people with ME/CFS, carers and health professionals in the UK engaged with the recent survey from the ME/CFS Priority Setting Partnership. Through three stages of participation, this process is aiming to define the top ten research priorities for people affected by this disease. The process now has just one more step – and you could be part of it. These
NICE Committee Member Community Call Review
Two NICE ME/CFS guideline committee members joined #MEAction for a community call, to provide their insight into the guideline process and answer questions. Adam Lowe is a person with ME and has been supporter of various ME organisations, including #MEAction UK and Science for ME. He was one of five lay members on the committee.
NICE Retweeted #MEAction UK’s Dear Doctor Campaign!
On November 12th, just a few days after our launch of the Dear Doctor Campaign, @NICEGetInvolved retweeted our campaign and shared their thanks in our work to educate the medical establishment about the new guideline. This is cause for celebration! This is the start of a real change that has begun in how we are
Last chance to vote for your top ten ME/CFS research priorities in the UK
Over 1,700 people have now voted for their top ten ME/CFS research priorities in the UK. With the deadline fast approaching this is your last chance to join them and vote. Deadline Monday 13th December 5pm Vote now This process gives greater voice to people affected by ME/CFS to decide the direction of ME/CFS research
New Black British support group seeks members with ME and Long Covid
Darren Randon, co-founder of Well Versed Ink, is seeking new members for an online group for UK-based Black and Black-mixed adults living with diagnosed or suspected ME or Long-Covid. Formal diagnosis is not required. The group meets every other Sunday from 1-2pm. It provides a safe space to share experiences and create community, with the
Join over 1,000 people and vote for your ME/CFS research priorities
Over 1,000 people have now voted for their ME/CFS research priorities. People with ME/CFS, carers and clinicians in the UK are all asked to take part. The ME/CFS Priority Setting Partnership is particularly looking for more people from ethnic minorities, carers and health care professionals to take part. So far: Just 4% of respondents are
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
How the media reported on the UK’s new ME/CFS guideline
Media coverage of the publication of the new NICE guideline in the UK was impressive in its geographical spread and range of publications who reported on the story. The volume of articles shows the importance of the new guideline and highlights the increased awareness of the issues amongst the UK media. #MEAction UK volunteers are
Send a message of thanks to NICE committee members
The new ME/CFS guideline contains some major improvements. We’re wanting to thank the lay members and others who fought so hard for these.
Thousands living with chronic illness ME are listened to after years of fighting to be heard – Press Release
Press Release After 14 years of recommending graded exercise therapy to people with myalgic encephalomyelitis (ME), the National Institute for Health and Care Excellence (NICE) has removed this harmful treatment from its new guideline on ME/CFS, released today. Sian Leary, spokesperson for #MEAction UK, highlights the importance of the new guideline: “This is a huge