4,000 Voices Heard by HHS. Here's What Comes Next.

Nearly 4,000 of you signed our urgent letter to Secretary Kennedy calling on HHS to protect Medicaid access for people with ME/CFS and Long COVID. That is an extraordinary show of collective strength from a community that already gives so much each day. 

We know there is so much at stake. 

The One Big Beautiful Bill Act (HR1) passed last year requires most adults ages 19-64 on Medicaid expansion to complete and document 80 hours per month of work, volunteering, or school to keep their healthcare coverage. States must implement this harmful policy by January 2027. The bill includes a medical frailty exemption from this new requirement, but only if people with ME/CFS and Long COVID are explicitly recognized under it. Right now, that recognition is not guaranteed.

We all know that overexertion can cause our symptoms to permanently worsen. 25% of patients are housebound or bedbound, and most of us cannot consistently work at all. Losing Medicaid coverage doesn’t just mean losing health insurance. It means losing access to the care that helps us survive.

We are fighting for a full medical frailty exemption from Medicaid work requirements, for all people with ME, Long COVID, and Infection-Associated Chronic Conditions. We are also fighting for disabled people to be able to self-declare their medical frailty on exemption paperwork, whenever possible — this is to protect the 90% of us who are undiagnosed but still too sick to work. 

At this year’s #MillionsMissing, we made a significant breakthrough. The Office of the Surgeon General has committed to advocating for our community. This is a meaningful step toward the federal recognition that people with ME/CFS and Long COVID have long deserved, and a sign that our advocacy is not only being heard, but also supported, at the highest levels.

We are building momentum. But momentum takes resources.

If our work means something to you, if you’ve felt seen, supported, or stronger because of this community, please consider making a $25 or $250 donation today. Every contribution fuels our advocacy, our campaigns, and our ability to show up for you when it matters most.

Thank you for standing with us. We are in this together.