NEWS

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.

Two caregivers share their insights from decades of caregiving for spouse, children, mother, teens and adult children with ME

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.

We know how important this is for you.

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.

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

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

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

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.

#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.

Learn more about this year’s project

The sole Long COVID clinic of North Carolina closed last week after its federal funding ran out.

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

Sick and disabled people are protesting today, Monday, May 12th at the Capitol to tell Congress that forcing chronically ill people to work in order to keep their Medicaid healthcare will only make our country sicker and more reliant on government services.

We reached 7,000 signatures on our last letter. This time, our goal is 10,000. Please sign the letter today and share it with your friends and family.

Share this message about #MillionsMissing with your own networks.

#MEAction Scotland will be outside Scottish Parliament in Edinburgh on Wednesday 14th May, from 12–2pm, calling on the Scottish Government to act on its promises.

#MEAction has been hard at work connecting individuals to their elected officials to talk about the ME/CFS Research Roadmap, Medicaid, and telehealth.