NEWS

#MEAction and Body Politic collaborated last spring, with a new national telehealth program, Home Test to Treat. We are now able to share initial findings from the program!

As #MEAction prepares for the year ahead, I’m thrilled to share with you a few highlights from the incredible advocacy projects our staff has undertaken this past year.

Volunteers from #MEAction Scotland and Long Covid Scotland talked to over 60 MSPs at an Information Stall in the Scottish Parliament.

#MEAction and the Mayo Clinic have been awarded the Sigma 2024 American Nurses Credentialing Center Evidence-Based Practice Implementation Grant awarded by STTI.

#MEAction Scotland has refreshed and updated its strategic priorities for the period 2024-2026.

#MEAction is sending an urgent letter to NIH Director, Dr. Monica Bertagnolli, demanding that the NIH fund the ME/CFS Research Roadmap.

I had the privilege of attending the RECOVER-TLC kick-off meeting while Jaime Seltzer represented the needs of the ME community in a panel discussion.

The Pillow Writers Anthology offers selected writings by the writing group of the same name. Issue 1, Near-Life Experiences, is available now.

We tallied up some numbers from our #TeachME, TreatME campaign to educate clinicians and medical students about ME, and the results are fantastic!

#MEAction has just been awarded a 3-year grant by the Long COVID Program of the Minnesota Department of Health (MDH) to address the impacts of Long COVID, ME/CFS, and related conditions.

We are THRILLED to share the successes of our #TeachMETreatME campaign as we report back on the medical education events that have taken place so far.

Learn more about our campaign, the events, & how to get involved

#MEAction’s Jaime Seltzer has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year!

NIH’s recent paper on ME/CFS elicited strong reactions from the community.  While we recognize the incredible sacrifice of the patient community who gave their health and time to make this study possible, ultimately, we caution against drawing any sweeping conclusions from this study. The paper draws conclusions based on an atypical cohort that may not be representative of the ME/CFS community, and from a very small sample size, and there are also conclusions drawn in regards

With it being Black History Month, it was crucial to me to make sure we spotlighted someone from the ME/CFS and Long COVID community who is Black. Being Black and disabled is an entirely different experience. Not only do we deal with ableism, but we also deal with racism, especially medical racism. According to the Journal of Women's Health, “Black women continue to experience excess mortality relative to other U.S. women, including—despite overall improvements among Black wo

The NIH ME/CFS Research Roadmap public comment period is open now with a deadline of March 8th. #MEAction is a member of the ME/CFS Research Roadmap Working Group and for the past several months we have been advocating on behalf of this community within this group. Our Executive Director, Laurie Jones, served on the nervous system committee group prior to going out on maternity leave. She helped plan the first webinar and wrote drafts of research objectives with other committ

The U.S. Senate HELP Committee held a hearing on Long COVID yesterday to discuss advancing research and improving patient care.

The U.S. Senate Committee on Health, Education, Labor & Pensions will host a hearing on addressing Long COVID, advancing research and improving patient care TOMORROW, Thurs. 18 at 10 a.m. ET. Watch the hearing and find more details HERE.  Angela Meriquez Vázquez, M.S.W. will be one of three stellar advocates testifying about her personal experience with Long COVID. Vázquez is the former President of Body Politic, a grassroots health justice organization at the forefront of Lo

As many of you know, we lost a wonderful person recently. Beth Mazur passed away after battling ME for 15 years. She was the cofounder of #MEAction and a selfless beacon of hope and light for so many in our community. She demonstrated an unwavering commitment to the cause. We could not be more devastated. Beth put her whole self into the fight for equity for people with ME. Every person with ME mattered more to Beth than you will ever know. We join the family in inviting you

We are sharing some sad news. Please put your health first. Content warning for sharing the loss of a community member.