Protesters disabled by Long COVID and myalgic encephalomyelitis (ME/CFS) are protesting at the White House sidewalk TODAY at 12 p.m. ET to say that the “pandemic is not over,” and to call on President Biden to declare Long COVID and ME/CFS a national emergency.
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
NPR featured #MEAction in an article about long COVID called, “For patients with long COVID, chronic fatigue syndrome may offer a guiding star.” MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, speaks about how long COVID researchers and doctors must learn from the ME/CFS community. “People with chronic complex disease have been living with
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
#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
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
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.