Protect Medicaid access for people with ME/CFS and Long COVID
New Medicaid work requirements could put people with ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs) at risk of losing health coverage. We're fighting to ensure our communities are recognized under medical frailty protections.
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WHY OUR COMMUNITIES ARE AT RISK OF LOSING MEDICAID
Under HR1, Congress mandated that Medicaid recipients work 80 hours a month, unless they can prove they are “medically frail,” or risk losing their health care access. For most of us, attempting to work 80 hours will only worsen our illnesses, and may cause permanent harm.
On June 1st 2026, CMS released a framework for states to implement work requirements that makes receiving the medical frailty exemption even more difficult. The affected adults with Medicaid must now also prove their medical condition significantly impairs a person’s ability to comply with the work requirement. Assessing and documenting this will require very sick people to navigate even more complex policies and paperwork.
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ME/CFS and Long COVID can cause severe disability.
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Only one in four people with ME/CFS is able to work.
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Medicaid provides essential healthcare coverage to over 15 million people with disabilities.
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~10 million people are expected to lose healthcare access through Medicaid because of new federal work requirement policies.
OUR GOAL
We are calling for:
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Recognition of ME, Long Covid, and other Infection-Associated Chronic Conditions (IACCs) under medical frailty protections;
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Inclusion of the following diagnostic codes in ex parte verification processes for exemptions: ME/CFS: G93.32l and Long COVID: U09.9. Also consider including: postural orthostatic tachycardia syndrome: G90.A; hypermobile Ehlers-Danlos syndromes: Q79.62; mast cell activation syndrome: D89.4;
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Ongoing use of self-declarations of medical frailty, whenever possible;
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Simple, accessible documentation requirements without frequent renewal requirements.
No one should have to sacrifice their health just to keep their healthcare.
We are working to ensure our community is protected through medical frailty exemptions.
TAKE ACTION
Don’t have a state chapter? Email advocacy@meaction.net to get involved.
“I have had to rely on Medicaid for access to medical care since I was kicked from my parents' insurance about two years ago. I am no longer working and would be unable to pay for the seven medicines I take. My quality of life, which is already not great, would worsen by a lot if I lost access to these medicines and to the doctors that I see regularly.” - Jules, NC
“There are many people like me out there and not all of them have been approved for SSDI or SSI, many have been denied not because they don’t need it but because not enough doctors understand ME and it is not listed as a condition for SSDI. And now, on top of it all, we are fighting to show our condition(s) makes us Medically Frail…Please include both ME and brain injuries under the medically frail definition so we do not lose life saving Medicaid benefits.” - Liz, California
CAMPAIGN TIMELINE
Developed Frail and Furious policy demands
1/2026
Delivered letters to 42 Medicaid state directors
Represented on a national panel of the Grassroots Project Webinar: An Overview of HR1
Delivered letter to the CMS Administrator
2/2026
Began activating state chapter leaders around Medicaid policy
3/2026
3/2026
Educated USAWG and Caregivers groups on campaign goals and actions
4/2026
4/2026
Hosted storytelling workshops on why ME is a serious, complex medical condition and why Medicaid matters
4/2026
Began collecting stories on why Medicaid matters
5/2026
5/2026
5/2026
5/2026
Met with the Office of the Surgeon General in Washington, D.C.
Organized global #MillionsMissing 2026: Frail and Furious, with over one million views on Facebook and Instagram alone, and creativity from across the world
Delivered 4,000 -signature petition to The U.S. Department of HHS
Issued press release responding to CMS Interim Final Rule
6/2026
FAQ
WHY "MEDICALLY FRAIL "?
“Medically Frail” was used in “The One Big Beautiful Bill” to describe people who would be exempt from work requirements for Medicaid. It’s vague – and that’s the point. We have to prove that people with ME/CFS and Long COVID are frail enough to qualify for an exemption from onerous requirements. You may not like the word—and should definitely be upset at how these new rules are being rigged to take away people’s health care—but we need to insist that our at-risk community is granted “medically frail” exemptions.
WHAT IF I HAVE A DIFFERENT CHRONIC HEALTH CONDITION?
We believe no one should have their health care taken away because they are too sick to work. Our campaign will continue to work in a large disability coalition that advocates to all decision-makers to define “medically frail” as broadly as possible to capture everyone whose health or function limits their ability to meet the new work requirement.
HOW DOES THIS AFFECT PEOPLE NOT ON MEDICAID?
ME and Long COVID are still widely unrecognized as serious, disabling conditions across the whole health system, which harms all of us. Winning “medically frail” recognition in Medicaid is a key lever to pull us out of the shadows and build official recognition—strengthening the case for better diagnosis, care, support, and disability benefits for everyone.
