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"But you don't look sick." New Medicaid rules deepen stigma against people with ME and Long COVID. We're fighting back.
#MEAction has submitted its official public comment to the Centers for Medicare and Medicaid Services (CMS) about their new Medicaid work requirements regulations. There are just a few more days for you to submit your own public comment before the deadline at 11:59pm EST on Friday, July 31st. You don’t need to be a policy expert to make your voice heard. Use our easy template to share your story. Please support our work to help us continue the fight to recognize ME and Long C
7 days ago3 min read
A Week of Wins: The Roadmap. Congress. The Surgeon General.
This has been a remarkable month for #MEAction and I wanted to share the news directly with you.We are closer than ever to getting the ME/CFS Research Roadmap funded.Building on the Congressional relationships we developed in May through our partnership with #NotJustFatigue, #MEAction met with six offices of members of the Labor-HHS Appropriations Subcommittee over the last two weeks to request $50 million in dedicated funding for the ME/CFS Research Roadmap. We have received
Jul 232 min read
#MEAction & Community Responds to Harmful Wired Article
25+ advocates join a complaint against Wired. Add Your name to the petition.
Jul 142 min read
#MEAction and Mayo Clinic Researchers Launch Initiative to Transform Emergency Department Care for People with ME/CFS and Long COVID
Funded by the Whittemore Peterson Institute (WPI) and Mayo Clinic, the project will develop the first nationally applicable clinical guidelines for emergency department care of ME/CFS and Long COVID patients
Jun 233 min read
What Juneteenth reminds us for ME and Long COVID communities
Juneteenth is a moment to celebrate freedom and reckon honestly with who that freedom has and has not reached. For the ME and Long COVID community, that reckoning is personal.
Jun 192 min read
Frail and Furious: 10 Things You Need to Know About New Changes to the Medicaid Program
People with ME and Long Covid should be exempt from work requirements, period. Join our fight.
Jun 183 min read
Our Community Needs Urgent Support
A $44,000 grant is waiting. Help us unlock it.
May 212 min read
4,000 Voices Heard by HHS. Here's What Comes Next.
Nearly 4,000 of you signed our letter to Secretary Kennedy calling on HHS to protect Medicaid access for people with ME and Long COVID.
May 202 min read
We Made Real Progress at #MillionsMissing — Here's What's Next
We built key relationships to protect Medicaid for ME and Long COVID. Now we need your help to keep going.
May 142 min read
#MEAction Urges HHS to Exempt ME/CFS and Long COVID Communities from Medicaid Work Requirements
On May 12th, the ME/CFS and Long COVID community are gathering outside the Department of Health and Human Services to call on HHS policymakers to intervene before tens of thousands of people with the debilitating diseases of ME/CFS and Long COVID lose access to the healthcare they need to survive.
May 83 min read
Big News: $15K Matching Grant for Emergency Department Project
Give today and your donation will be matched up to $15K!
Apr 281 min read
#MEAction Sends Letter to Dr. OZ Urging for Medicaid Protection
Join our fight to protect Medicaid for our community!
Apr 282 min read
#MEAction + Mayo Algorithm’s Effect on ME/CFS Care
We have a new research paper out, and it marks an important milestone in a collaboration that set out to improve care for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The paper is co-first-authored by Jaime Seltzer, Scientific Director at #MEAction, and Dr. Stephanie Grach, an Assistant Professor of Medicine at Mayo Clinic Rochester, and a clinician-researcher specializing in ME/CFS care.Through a small grant from the Society to Improve Diagnosis i
Apr 213 min read
#MEAction Sends Letter to 42 States Urging Recognition of ME/CFS and Long COVID as Serious Medical Conditions
#MEAction is fighting to protect your Medicaid access. We’re taking action in 42 states and at the federal level to ensure ME/CFS and Long COVID are recognized and protected.
Mar 132 min read
#MEAction Sends Joint Letter Asking Senate to Appropriate $50 million to ME/CFS Research
We have NEWS to share about funding for the ME/CFS Research Roadmap - the NIH’s most comprehensive, strategic plan for ME/CFS research to-date.
Mar 102 min read
#MEAction Partners with Solve for Advocacy Week 2026
This year’s Advocacy Week will focus on medical education.
Mar 32 min read
#MEAction Testifies in Support of Maryland HB 27 to Advance Long COVID Research
#MEAction joined a Maryland bill hearing to support House Bill 27 (HB 27), a proposal that would create a Maryland Long COVID Research Fund and establish a Long COVID Innovation Grant and Loan Program through the Maryland Technology Development Corporation (TEDCO).
Feb 192 min read
Why We Launched an ICE campaign
Where we spend money reflects what we value. From ME research funding to Medicaid cuts, here’s why we’re speaking out, and how you can help.
Feb 93 min read
Congress Tells NIH: Develop Plan to Implement ME/CFS Research Roadmap
Congress has directed NIH to develop an implementation plan for the ME/CFS Research Roadmap within 180 days — a major step forward in the fight for treatments, clinical trials, and funding.
Feb 42 min read
ICE Makes Me Sick: Fund Healthcare, Not Violence
Like you, we have been watching horrors unfold especially in Minnesota. We have been checking on our #MEAction Minnesota community and sending all our love and support. This situation is heartbreaking and sickening. We’ve heard your requests to find ways to help, so we’ve created a campaign with disability activist partners so you can contact congress, sign an open letter, and share on social media. We also highlight resources and groups on the ground that you can support. IC
Jan 292 min read
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