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
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.
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
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.
The National Institute for Health and Care Excellence (NICE) has now published its ME/CFS guideline and we are delighted that they have finally listened to the ME community in several key areas. NICE delayed publication of this guideline in August after concerns were raised by a few Royal Colleges. Instead, they held a roundtable event,
Take the survey The ME/CFS Priority Setting Partnership (PSP) is giving you the opportunity to define your top ten priorities for future ME/CFS research. In partnership with the James Lind Alliance, the ME/CFS Priority Setting Partnership is launching their second survey today. The research questions in this survey are based on over 5300 ideas submitted
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.”
#MEAction UK will be sending a representative to the NICE roundtable discussion on the final ME/CFS guideline, and have had a pre-meeting with NICE to raise our concerns about the delay to publication.
NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine
We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in its current form. Sign the petition 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
