Now that our government has narrowly avoided a shutdown, I’d love to share some insights about next year’s federal budget and how we are helping to shape it today. A key goal of Advocacy Day 2021 was to circulate Chairwoman Eshoo and Representative Lofgren’s “e-Dear Colleague” letter, requesting an additional…
After three years of advocacy, Solve M.E. scored a concrete legislative victory with the passage of The Clinical Treatment Act. This covers clinical trial costs for qualifying 74.8M Medicaid participants — including ME/CFS patients — and provides resources for ME/CFS clinical trials. Lowering the costs and barriers for participation in clinical…
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…
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…
Your advocacy efforts are creating historic opportunities for federal funding of research and ME/CFS education. Two particular pieces of proposed legislation have great potential and I wanted to share my thoughts on each of them Solve M.E. is proud to support The COVID-19 and Pandemic Response Centers of Excellence Act…
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…
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…
Who: Ron Davis’s lab at Stanford University is conducting a functional microbiome study in collaboration with Harvard University and Vassar College. They are looking for severely Ill, primarily bed-bound patients within the United States to participate. What: Participants will be asked to provide a one-time fecal swab which can be…
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…
#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... This post appeared first on #MEAction Network. Read More