Six Months In: Here Is What We Have Built Together

In just six months, #MEAction has taken on some of the biggest issues facing people with ME and Long COVID. A small, dedicated staff, an extraordinary group of volunteers, and generous donors like you have gotten us here. I want to take a moment to tell you what we have accomplished together, because celebrating our collective work is important. 

We Showed Up Around the World

This year, the #MillionsMissing campaign was amplified globally. From Brazil to France, the UK to Mexico, Germany, Canada, Norway, the Netherlands, Denmark, Australia, and many more. Our community showed up as one. We were Frail and Furious around the world, and the world noticed. The reach of this campaign reminded every institution watching that people with ME and Long COVID are everywhere, they are organized, and they are not going away.

We Showed Up in Washington

Because over 7,000 of you signed #MEAction's letter to the NIH in 2024, we have built a direct line of communication with the NIH about the ME/CFS Research Roadmap and its implementation. We have also formed a relationship with the interim Surgeon General, opening new doors for recognition at the highest levels of federal health leadership.

We are pursuing a two-pronged approach to secure the research funding this disease deserves. On Capitol Hill, we are partnering with #NotJustFatigue to push Congress to allocate funding through Labor-HHS appropriations. At the same time, we are pushing for the NIH to fund the Roadmap directly. Senate meetings are still active and ongoing, and we are not giving up. We will not stop until the funding matches the burden of this disease.

We Fought for Medicaid

We launched the 2026 Frail and Furious campaign to fight for Medicaid work requirement exemptions for people with ME and Long COVID. For most of us, attempting to work 80 hours to keep our health insurance — as new federal legislation requires for some — will only worsen our illnesses, and may cause permanent harm. This is why we are using community power to ensure people with ME get a medical frailty exemption. We sent letters to CMS and Medicaid agencies in 42 states explaining why protecting our community is not optional. It is a matter of survival. We also sent a petition with 4,000 of your signatures to HHS. 

We are not giving up. We are continuing to fight - at the federal and state levels - for what our community needs AND preparing for what happens next, no matter the outcome. We will do all we can to support individuals who need care, period. Right now, you can take action by leaving a public comment for CMS before the July 31st deadline.

Our Medical and Community Programs Gain Momentum

Our Scientific Director's ongoing work with Mayo Clinic researchers has continued to produce groundbreaking results. In the first six months of 2026 alone, #MEAction's Scientific Director Jaime Seltzer co-authored two peer-reviewed publications in major clinical journals alongside Mayo Clinic researchers. In February, the Annals of Family Medicine published their study revealing that effective medications for ME/CFS are being significantly underprescribed by general practitioners, leaving patients to manage their symptoms through supplements instead. In April, the International Journal of Environmental Research and Public Health published their study showing that the point-of-care diagnostic algorithm that Jaime helped build is actually working. Referrals to Mayo's ME/CFS specialty clinic increased and became more accurate after its introduction. 

Two papers. Two major journals. Real-world evidence that our work is changing how medicine treats this disease.

We are also preparing to officially launch the Emergency Department Project and its first community survey, with the goal of improving emergency care for people with ME and Long COVID. Too many in our community avoid the ER out of fear of being made worse. We are working to change that.

In Minnesota, we continued piloting our Home and Community-Based Services navigation program, connecting individuals to the services they need and deserve. This work is quietly transforming lives and laying the groundwork for a national program.

And incredible volunteers continue to lead support groups and state chapter meetings across the country. Over and over again, we hear from community members that these spaces are lifelines. We could not do this without the people who show up week after week to hold this community together.

We Raised Our Voice

From prominent national press placements to social media reach that exceeded to one million people during Millions Missing alone, with 50% of that engagement coming from people who had never followed us before, #MEAction has always known how to get the word out. These last six months have been no exception. Every story published, every post shared, every new person who learned what ME is for the first time because of our work: that is the movement growing.

We Grew Our Community

New donors. New advocates. New state chapters activated. During Advocacy Week, in partnership with SolveME, we reached 30 states and secured a concrete win in Vermont, where the Department of Health committed to updating their ME/CFS resources and signed on to support escalation to the national level. This community is growing, and the people joining it are ready to fight.

What We Still Need

I want to be honest with you. The second half of 2026 is going to be just as demanding as the first. Medicaid work requirements take effect January 1, 2027 and the window to protect our community is closing. Canary Corps —which aims to be a national peer-support program to help people with ME, Long COVID, and related conditions keep their Medicaid coverage — is ready to launch but needs funding. The Emergency Department Project is rolling out. Our artist salons and more community engagement activities continue in August and our fight for research funding in Congress and NIH is happening right now.  

We have momentum, relationships, and a community that shows up. What we need now is the resources to match the moment. If you are able to support our work, even a small gift makes a real difference.

DONATE TODAY

The stakes have never been higher. Neither has our resolve. Thank you for being the reason we show up.

We made it to our $200,000 goal - which is the bare minimum of what we need! Help us reach our stretch goal of $215,000!