Ian Simon, the head of the Long COVID Office at Department of Health and Human Services (HHS), released the following statement to coworkers: Dear Colleagues, We are writing to let you know that the Office of Long COVID Research and Practice will be closing as part of the administration’s reorganization coming this week. We are
We are writing to you with an urgent call to action. The Trump administration has cut funding for the Center for Solutions for ME/CFS at Columbia University as part of a broader $400 million funding termination at the university. This devastating decision includes the loss of NIH funding for one of the nation’s few Collaborative Research
Press Contact: #MEAction: press@meaction.net Patient & Expert Voices Must Be Heard: Advocates Urge Administration to Reinstate Long COVID Advisory Committee #MEAction and the Patient-Led Research Collaborative – leading organizations advocating for people with Long
Expanded telehealth coverage for Medicare is set to expire at the end of this year, December 31st! Learn More #MEAction knows losing expanded telehealth will be a problem for many in our community and the wider disability community. While this action focuses on keeping the expanded Medicare coverage for telemedicine, we know that what Medicare
NIH’s recent paper on ME/CFS elicited strong reactions from the community.
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
Have you registered yet to join us this Wednesday, December 6th at 4pm ET / 1pm PT for a community presentation introducing the Canary Corps program? Ahead of Wednesday’s event we wanted to share with you Alison’s story. Alison Sbrana will be co-presenting this event, and much of the design of Canary Corps has been
I’ve got exciting news to share! In early 2024, #MEAction will launch a new grassroots, peer-run program in the United States to help people with ME, Long COVID, and other infection-associated chronic illnesses find and access local services and support for people with disabilities. This will be an innovative and radical program that is run
The National Institutes of Health (NIH) announced they will designate people with disabilities as a population with health disparities. This is a win that could have a large impact on people with ME and the millions of people with disabilities across the country. “This designation recognizes the importance and need for research advances to improve
