Protect Medicaid Access for People with ME/CFS and Long COVID
Robert F. Kennedy, Jr., Secretary, Health and Human Services
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.
Congress has mandated that Medicaid recipients work 80 hours a month unless they can prove they are “medically frail,” or risk losing their Medicaid. Attempting to meet an 80‑hour work requirement for most people with ME/CFS and Long COVID will only worsen their illness, and may cause permanent harm.
Before states start enforcing these new work rules, the HHS Secretary must issue guidance that will shape how states decide who counts as “medically frail.” Join us in demanding that people with ME/CFS and Long COVID are fully protected—add your name to this petition today.
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.
Sponsored by
To:
Robert F. Kennedy, Jr., Secretary, Health and Human Services
From:
[Your Name]
Dear Secretary Kennedy,
We are writing on behalf of #MEAction and the undersigned organizations representing people living with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and Long COVID: communities fighting every day for survival, dignity, and access to care.
Your decision about who qualifies as medically frail will directly determine whether Americans with ME/CFS and Long COVID are able to access essential healthcare. For Americans living with these diseases, being required to work beyond our limits can trigger a systemic worsening of symptoms and further hinder our ability to carry out daily activities.
We urge you to act informatively and decisively: people with ME/CFS and Long COVID must be recognized as medically frail and exempt from work requirements. Access to care, treatments, and knowledgeable medical providers is vital to preserving and improving our ability to contribute to society.
We also urge you to grant States, demonstrating good faith efforts, the flexibility needed to implement safeguards in a way that protects medically frail populations like ours, before requiring them to move forward with work requirements.
Facts on ME/CFS and Long COVID:
- Prevalence: ME/CFS is an infection-associated chronic illness in which onset is associated with infection up to 80% of the time. Accordingly, ME/CFS cases have surged after COVID-19.
- Disability: Approximately 75% of ME/CFS patients are unable to work, and 25% are housebound or bedbound and have significant difficulty carrying out activities of everyday living (ADLs). Disability rates for Long COVID are also high, with both groups experiencing persistent cognitive, mobility, and independent living challenges.
- Caregivers: If a family member loses Medicaid, the caregiver faces increased financial burdens from direct care costs and indirect expenses, including missed work and a significant toll on their own financial security and well-being.
Many Americans with ME/CFS and Long COVID rely on Medicaid for access to medical care. Forcing work requirements on our communities will make us more disabled in the long term – and, ultimately, require more federal spending on supporting people living with these highly debilitating diseases.
Secretary Kennedy, please stand with Americans fighting to live with ME/CFS and Long COVID. Protect our access to healthcare. Our survival depends on your decision.