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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
Final NICE ME/CFS guideline published – find out the big news!
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,
Choose your top ten ME/CFS research priorities – UK survey launched
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
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
“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.”
An update on the NICE roundtable from #MEAction UK
#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 announces roundtable event to ensure implementation of ME/CFS guideline
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
Forward-ME : RESPONSE TO ‘PAUSE’ IN NEW NICE GUIDELINES
As part of the coalition Forward-ME, MEAction UK is pleased to share below, the latest statement from the group regarding this week’s pause by NICE of new Guideline publication. ME CHARITIES BAFFLED BY DELAY TO NICE GUIDELINE Statement on the delay to publication of the NICE Guidelines on diagnosis and management of ME On Behalf
Sign Our Petition: Publish the NICE ME/CFS Guideline Now.
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
Fury as NICE cancels publication of finalised ME/CFS guideline
There is widespread anger in the ME community today as NICE announced that it will not be publishing their finalised guideline on ME/CFS after pressure from sections of the medical establishment. At #MEAction UK, we are furious that NICE have capitulated to vested interests of those who support graded exercise therapy instead of defending their
Cancelled: Chat to NICE ME/CFS guideline committee members
On Tuesday 24th August 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.
Connecting Black People with ME and/or long Covid in the UK
Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath, is launching a new group aimed at supporting Black and Black-mixed people with ME and/or long Covid in the UK. The group plans to create a safe space to share experiences and create community with the