Wow! So much has happened in the last three months. Between the historic change to the National Institute for Health and Care Excellence (NICE) guideline on ME, terrific articles featured in the press, the tedious work of holding US federal agencies accountable, the effort to enhance clinical care, the continued work of promoting new research,
#MEAction summarized the scientific talks about ME/CFS and Long COVID presented at the International Association of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME) Conference that took place last August. We sent this summary of those talks to our database of journalists reporting on Long COVID this past October to underscore the parallels between the conditions,
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,
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 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
Be sure to attend the telebriefing by the Trans-NIH ME/CFS Working Group this Friday (10/22) at 3PM ET. The National Institutes of Health (NIH) has many questions to answer about its lack of tangible progress or strategic acceleration of medical research for people with ME. Read Our Questions for NIH ME/CFS research opportunity being missed
