Chronically Ill Community Responds to CMS Ruling on Medicaid

Communities living with energy-limiting, “invisible” chronic diseases are deeply concerned by the Centers for Medicare & Medicaid Services (CMS) interim final rule released last week that will make it even more difficult to receive exemptions from Medicaid work requirements than previously laid out in HR1 last fall.  

The interim rule will make the process of receiving work requirement exemptions more difficult for people with ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs). It will mean many in our community will lose access to healthcare, which will only worsen our community’s health and long-term work capacities. 

“This new guidance does not reflect the realities of living with ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs), and many in our community may struggle to qualify or navigate the process, even though they are seriously ill,” said #MEAction’s Campaign Director, Ben HsuBorger. #MEAction is a grassroots non-profit that advocates for people with ME/CFS and Long COVID. “Under this rule, once again, sick and disabled people are asked to prove how sick we really are.”

While HR1 promised to exempt medically frail individuals with serious or complex medical conditions from having to complete 80 hours per month of work, school, or community service, under the Interim Final Rule, having such a medical condition is not enough to receive exemption. Under this latest ruling, the medical frailty exemption has a new added requirement - the beneficiary’s medical condition must significantly impair a person’s ability to comply with the work requirement. The rule leaves how to assess and document an individual’s inability to work up to states, while creating a much higher burden of proof for people with disabling conditions.

Even before the Interim Final Rule, our community faced an uphill battle to ensure that ME/CFS and Long Covid were recognized under the medical frailty exemption. While ME/CFS is more disabling on average than multiple sclerosis, congestive heart failure, and end-stage renal disease and only one in four people with ME/CFS is able to work, ME/CFS lacks official disability recognition due to decades of stigma and a severe underinvestment in research and medical education. Up to 90% of people with ME/CFS are undiagnosed, which means that patients often lack the medical documentation and Medicaid claims data that states will rely on to verify medical frailty ex parte. 

Assessing and documenting inability to work will require navigating more complex policies and paperwork. Core symptoms of ME/CFS include cognitive dysfunction and post exertional malaise - worsening of symptoms with exertion - and complex bureaucratic processes are incredibly challenging to navigate. “Asking someone who is cognitively and physically disabled to do all this additional sick work to prove and document their illness is perversely cruel and will make them more sick,” HsuBorger said. 

Now, with the added requirement that medical frailty be limited to situations where an individual’s condition impairs their ability to meet the work requirements, people with ME/CFS are at even higher risk of losing the health insurance they rely on. Those with ME/CFS who work, are able to do so because they receive health care. If there is a gap in that care, health deteriorates, creating a vicious circle. ME/CFS and Long Covid include symptoms and capacities that constantly fluctuate - while sometimes people with these and similar diseases may be able to work 80 hours per month, in others, they may be bedbound. If our healthcare access relies on consistent ability to work, we will sustain lapses in coverage which may permanently worsen our health. 

#MEAction launched its “Frail and Furious” campaign at the beginning of 2026 to lobby CMS and impacted states to include ME/CFS, Long COVID and IACCs in the list of serious or complex medical conditions that qualify for medical frailty exemptions from Medicaid work requirements. We recently delivered a petition to the HHS Secretary with the same message. 

#MEAction also held a demonstration in front of the HHS at the beginning of May where we met with the interim surgeon general, who expressed support for our plight. We are also mobilizing our state chapters and have written to State Medicaid Directors in impacted states to take all available steps to protect our community’s access to Medicaid under the new federal guidelines.