This year, #MEAction is on the precipice of our most important work yet, and it couldn’t be at a more crucial time for ME.
We are a small but mighty organization that has fought for nearly a decade to get us to where we are today.
This year, you can pick where your money goes—either to specific programming or to where #MEAction thinks it is most needed.
We will put your money to good use—we promise!
Advocacy: Pushing NIH and Congress to Act Now
When ME and Long COVID are formally recognized as serious and complex medical conditions, everything changes. Research funding follows. Medicaid protections follow. The way doctors, lawmakers, and institutions treat our community follows. That recognition is what we are fighting for, and we are fighting on every front at once.
NIH — Fund the Roadmap:
Over 7,000 of you signed a petition to secure a meeting with the NIH Director, and on May 13th, we will be in the room demanding funding for the ME/CFS Research Roadmap. The roadmap exists. The funding must now match the burden of this disease.
Congress — Appropriate $50 Million for ME:
Alongside a coalition of partner organizations, we have been fighting for appropriations that include $50 million for ME research. Our allies in Congress are pushing hard, and we are taking critical meetings this month to close the gap.
Medicaid — Protect Our Community:
New Medicaid work requirements are coming, and people with ME and Long COVID are at serious risk of losing coverage. We are fighting to protect healthcare in every state, right now.
Your support funds the advocacy, the meetings, the lobbying, and the organizing that makes it all possible.
The Emergency Department Program: Changing How ERs Treat ME
Too many people with ME leave emergency rooms dismissed, misdiagnosed, or made worse. That ends here.
Jaime Seltzer has been working alongside clinicians at the Mayo Clinic to transform how ME is recognized and treated in emergency care. We’re thrilled to announce a new Emergency Department Program that will establish updated clinical guidelines for ERs across the country, a change that could protect patients at their most vulnerable moments.
The Whittemore-Peterson Institute has funded half of this project. We need your help to complete it.
Canary Corps: Safety Net for Our Most Vulnerable
#MEAction plans to launch Canary Corps, a social support program helping people with ME, Long COVID, and other infection-associated chronic illnesses access Medicaid, navigate new work requirements, and connect with Home and Community-Based Services. But we can't do it without you.
Tens of thousands of people in our community are at risk of losing the healthcare they need to survive. 24% of Medicaid recipients with disabilities never enrolled through a formal disability pathway, which means they have no protected status when work requirements kick in. Without help navigating the paperwork, eligible people will lose coverage.
We know this model works. Our Minnesota Home Help Navigation Program spent the past year helping people with ME and Long COVID apply for in-home support through Medicaid, and it proved successful. Canary Corps takes that work national. To launch, we need to hire a social worker and a dedicated volunteer coordinator, who will work alongside our Director of Advocacy, Ben HsuBorger. They are the difference between someone keeping their healthcare and losing it.
The window to act is now. Please make a gift today.
