This Is What We Are Up Against

I've recently spent hours on the phone with family members of some of the most severely ill ME patients. After a decade working in this space, I am still utterly appalled by what I hear. I'm genuinely angry that there is still so much gaslighting and harm being done to people who need the most compassion and the most support.

One person I've been connected to recently is currently fighting for her life while a hospital continually denies that her disease is real. I'm furious that there are still doctors who deny that Long COVID exists, that ME is a biological illness. I'm furious because, after all of this work, why are we still here?

And yet, in the middle of that fury, I have real hope. Because I see momentum. Our work is paying off.

This year, everything we do is in service of one goal: getting ME recognized as a serious and complex medical condition. Because if that happens, people with ME can be categorized as medically frail for Medicaid, for the NHS, for access to services across the globe. If that happens, we can push the NIH and Congress to fund ME at the level this disease actually demands, and that becomes a signal to the rest of the world to do the same. If that happens, caregivers get support, doctors get education and guidelines, and the care people receive finally reflects the reality of what they are living with.

That fight is at the heart of everything we are doing right now across three programs, and your support this year could make all the difference. Choose where your gift goes: fund the programs doing the most urgent work, or allow us to direct it where we believe it is needed most.

Give to the General Fund

MillionsMissing Advocacy

When ME and Long COVID are formally recognized as serious and complex medical conditions, everything changes. Research funding follows. Medicaid protections follow. The way doctors, lawmakers, and institutions treat our community follows. That recognition is what we are fighting for, and we are fighting on every front at once.

Over 7,000 of you signed a petition to secure a meeting with the NIH Director, and on May 13th we will be in the room demanding funding for the ME/CFS Research Roadmap. Alongside a coalition of partner organizations, we are fighting for $50 million in congressional appropriations for ME research, with critical meetings happening this month. And as new Medicaid work requirements take effect, we are fighting in every state to make sure people with ME and Long COVID don't lose the coverage they need to survive. Your support funds the advocacy, the meetings, the lobbying, and the organizing that makes all of it possible.

Support the Advocacy Fund

Emergency Department Guidelines

We are thrilled to announce the launch of a new program- already halfway funded! 

Too many people with ME leave emergency rooms dismissed, misdiagnosed, or made worse. That ends here.

Jaime Seltzer has been working alongside clinicians at the Mayo Clinic to transform how ME is recognized and treated in emergency care. We’re thrilled to announce a new Emergency Department Program that will establish updated clinical guidelines for ERs across the country, a change that could protect patients at their most vulnerable moments.

The Whittemore-Peterson Institute has funded half of this project. We need your help to complete it.

Fund the Emergency Department Program

Canary Corps

#MEAction plans to launch Canary Corps, a social support program helping people with ME, Long COVID, and other infection-associated chronic illnesses access Medicaid, navigate new work requirements, and connect with Home and Community-Based Services. But we can't do it without you.

Tens of thousands of people in our community are at risk of losing the healthcare they need to survive. 24% of Medicaid recipients with disabilities never enrolled through a formal disability pathway, which means they have no protected status when work requirements kick in. Without help navigating the paperwork, eligible people will lose coverage.

We know this model works. Our Minnesota Home Help Navigation Program spent the past year helping people with ME and Long COVID apply for in-home support through Medicaid, and it proved successful. Canary Corps takes that work national. To launch, we need to hire a social worker and a dedicated volunteer coordinator, who will work alongside our Director of Advocacy, Ben HsuBorger. They are the difference between someone keeping their healthcare and losing it.

The window to act is now. Please make a gift today.

Help Us Create the National Canary Corps

This #MillionsMissing, we need to raise $200,000 to continue this work and take all three programs forward. 

You pick the programs that matter most to you. And if you can't give yourself, there are other ways to help: host your own fundraiser, text your loved ones, share your story, share our ask. Every action matters.

Our work matters. We cannot let this momentum slip away.

Donate today.

Laurie Jones

Executive Director

#MEAction