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
A team of ME/CFS advocates have launched a petition to raise awareness about the dire situation in Germany. Help Germany get to 50,000 signatures by Tuesday, Nov. 9th and they will be granted a public hearing in the German Bundestag to finally draw attention to the issue of ME/CFS . Anyone across the world can
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.
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
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,
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
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.”
A person with ME (who wishes to remain anonymous online) sent this letter to the author of The New Yorker article, “The Struggle to Define Long COVID,” and to the magazine’s editor. #MEAction was also concerned to see The New Yorker publish such a disparaging and flawed article about the Long COVID community, which cherry-picked examples of
#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.
#MEAction is proud to be a founding member of the World ME Alliance, a coalition of national ME/CFS organisations, which announces today a major name change and rebrand from the International Alliance for ME. To modernise and promote its unique role, the World ME Alliance is launching a new website, with a new name, logo,
