NEWS

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.

Join our fight to protect Medicaid for our community!

Fury and hope can coexist. Here’s why we believe this is the year everything changes for people with ME.

#MEAction and NIH Director to Discuss Funding for ME/CFS Research Roadmap

#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.

#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).

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.

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.

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.

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

New Medicaid work rules will take effect at the end of 2026. Our care and support systems have long been rigged against disabled people, and these new paperwork rules will push even more sick people off the care and support they need.Please sign our letter to the HHS Secretary urging him to recognize people with ME/CFS and Long COVID as “medically frail” so that their access to Medicaid is protected.Why Medically Frail Congress has mandated that Medicaid recipients work 80 ho

#MEAction is thinking of our community during these unpredictable times.You’re doing your best. Reaching out for help takes courage and vulnerability. You deserve to feed yourself and anyone you care for with dignity. Finding help isn’t charity. It’s survival, community, and resilience.Here are some resources to help keep your fridge stocked: Call 2-1-1 (just dial 211) for your zip code — they’re a free hotline linking to local food pantries, soup kitchens, and emergency food

This year has been hard- we know because we have been on the ground fighting for ME and Long COVID every single day. In 2025, #MEAction has accomplished a lot. Just take a look below.1. Advocating for funding for the ME/CFS Research Roadmap: Secured a meeting with the NIH Director, and got the roadmap included in Congress’ draft appropriations language.2. Helping Minnesotans with ME/CFS and Long COVID apply for home care support by launching the Minnesota Home Help Navigation

The launch of the Minnesota Home Help Navigation Program is proof that advocacy works.

With the Minnesota Home Help Navigation Program now underway, here’s an inside look at the strategic choices in our patient-led playbook.

Pilot program offers free support for Minnesotans with energy-limiting illness

#MEAction has been working hard with #NotJustFatigue to advocate for the ME/CFS Research Roadmap and it has paid off! The Senate Appropriations Committee included the roadmap in their report!

We are excited to share some promising updates about the scientific work #MEAction is leading to advance the field of ME/CFS research.

The Minnesota Department of Health's Long COVID program has been saved from elimination!

On Wednesday 14th May 2025, #MEAction Scotland held Millions Missing Scotland outside the Scottish Parliament in Edinburgh.