NEWS

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.

We built key relationships to protect Medicaid for ME and Long COVID. Now we need your help to keep going.

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.

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.

This year’s Advocacy Week will focus on medical education.

#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.

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

I don’t need to tell you that these are extraordinarily difficult times. Across the country, we’re witnessing devastating cuts, acts of injustice, and widespread attacks on human rights. It’s overwhelming, it’s frightening—and yet, in moments like this, our purpose becomes even more clear. We are here to protect and uplift our community, especially those most vulnerable.Right now, unprecedented reductions in healthcare funding threaten millions of Americans, including people

Good news: Congress has extended Telehealth until January 31,2026 as part of a deal to end the government shutdown.This is not a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent. Join #MEAction in putting pressure on Congress to make Telehealth for Medicare permanent! Call your Member now using our call script, and tell Congress to stop messing around with your healthcare!For people with ME and Long COVID, Teleheal

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

Join our social media campaign to advocate for Medicaid and ACA.

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