On May 12th, #MEAction and the #MillionsMissing are sending out an SOS to Congress to Save our Support Systems. Save our Science. Save Our Society.
HERE’S WHY: Healthcare, research funding and accessibility were already incredibly fragile for people with myalgic encephalomyelitis (ME), Long Covid and the disability communities. Now, we are seeing constant threats to the infrastructures that sustain our communities – threats to our healthcare & home services, threats to our research funding, and threats to our ability to access disability services.
We are organizing a protest in front of Congress and rallies across the U.S. on May 12th to pressure Congress to stop the bleeding, and support our communities.
Join us for #MillionsMissing 2025:
- Join the protest at the Capitol in Washington, D.C. – Sign up here.
- Host your own protest or gathering in your hometown – See Toolkit
- Show up from home on May 12th
- Get creative – create SOS art with messages for our elected officials
Join our first organizing meeting: If you are interested in organizing a protest, gathering in a park as a community or making art, please join one of our protest organizing meetings on Thursday, April 10th.
Meeting #1: Thursday, 4/10 @ 12pm PT/ 3pm ET – Register Here!
Meeting #2: Thursday, 4/10 @ 3pm PT/ 6pm ET – Register Here!
Why We’re Sending out an SOS
- Research Funding: Our community was on a precipice of new research opportunities with the possibility of funding the ME/CFS Research Roadmap after decades of waiting, and that is now being threatened with major cuts to research funding and infrastructure across the board.
Research at Columbia’s ME/CFS Collaborative Research Center has stopped after losing federal funding. The federal government has shut down the HHS Office of Long COVID Research and Practice and Long COVID Advisory Committee. - Healthcare – Congress is considering cutting Medicaid by as much as $880 billion over the next 10 years! Gutting Medicaid means we give up on people with ME and Long COVID getting access to the healthcare and home care they deserve. 80 million Americans rely on Medicaid for their insurance.
- Accessibility–
Telehealth: Congress has passed a Continuing Resolution budget that will keep telehealth flexibilities for Medicare until Sept. 30th, 2025. We need to tell Congress to keep those extensions permanent!
Section 504 – Section 504 of the Rehabilitation Act of 1973 is currently facing significant legal challenges, which could undermine protections that ensure equal access to education, healthcare, and other vital services for individuals with disabilities. - Open Science – The current administration has released a list of forbidden words used to trigger denial of grant awards, revoked grants that have already been awarded, stopping studies years underway, and ending young people’s careers.
