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ME/CFS Research Roadmap: Our Fight on The Hill Continues
Senate to Discuss Funding ME/CFS Research Roadmap - Here’s how you can help!#MEAction has been fighting to fund the ME/CFS Research Roadmap from two angles - advocating for $50 million in appropriations from Congress, and working to secure direct funding from the Office of the Director at the NIH. Over the summer, we’ve met with key Members of the Labor-HHS subcommittee who still have the power to include the ME/CFS Research Roadmap in next year’s budget! That subcommittee is
4 days ago2 min read


Thank you for submitting Frail and Furious comments to CMS!
More than 79,000 comments were submitted—and every one must be
reviewed by CMS.
Aug 62 min read


"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
Jul 293 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


Severe ME Artists Project 2026 — Call for Entries!
Submit your work and join us for this year's Severe ME Artists Project!
Jun 184 min read


We’re furious: Last-minute changes to defining medical frailty
Medicaid work requirements exemptions are being restricted
Jun 43 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


#MEAction Sends Letter to Dr. OZ Urging for Medicaid Protection
Join our fight to protect Medicaid for our community!
Apr 282 min read


This Is What We Are Up Against
Fury and hope can coexist. Here’s why we believe this is the year everything changes for people with ME.
Apr 233 min read


#MEAction to Meet with NIH Director during #MillionsMissing Week
#MEAction and NIH Director to Discuss Funding for ME/CFS Research Roadmap
Apr 142 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 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


Spotlight: Black Women and Medical Racism
It's so important that we recognize the struggle of being believed when seeking medical help. Black women are consistently less likely to have their pain taken seriously at appointments. ME/CFS is already difficult to get taken seriously or to receive a proper diagnosis. Being a Black woman even lessens the chances of being diagnosed.
Feb 182 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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