Category: United States
#MEAction’s NIH Study Response
NIH’s recent paper on ME/CFS elicited strong reactions from the community.
NIH ME/CFS Research Roadmap Update–Public Comment Period Now Open
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
CANARY CORPS – Alison’s Story
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
CANARY CORPS – New Grassroots Program Coming Soon
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
Advocacy Win! Disability Partnerships Make a Difference for People with ME
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
#MEAction State Chapters Are Making Advocacy Moves
#MEAction is thrilled to share the incredible work our State Chapters have been up to over the past couple of months! They continue to amaze us daily with their dedication and hard work to bring awareness to the ME community. Read more about their success stories: California: The University of California has added some disclaimers
Join #MEAction Maryland’s #HelpMESenator Campaign
We are writing this article to share some exciting news! On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise
#MEAction and Long COVID Justice Issue Press Statement about NIH Failure of Long COVID
#MEAction and Long COVID Justice issued a press statement yesterday about our communities’ deep concerns regarding the rollout of RECOVER’s clinical trials for Long COVID. As studies show half of the Long COVID community meets the diagnostic criteria for ME/CFS – and our core symptoms overlap – RECOVER’s research has major implications for our community.
Creative Fundraising Initiatives for #MEAction
Calls for immediate public release of RECOVER’s clinical trial design