For the past 8 years, I have advocated alongside a community of people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a devastating disease that some studies describe as more disabling than multiple sclerosis, congestive heart failure, and end-stage renal disease. The majority of our community (an estimated 75%) are too sick to work, and 25% are housebound or bedbound. As the disease is most commonly triggered by infection, the pandemic has exploded the size of our community from an estimated 1.5 million pre-pandemic to potentially as many as 9 million Americans, with estimates suggesting half of the long COVID community may meet the criteria for ME/CFS at 6 months.
And yet, our community is terrified of getting kicked off Medicaid, as the majority of people living with ME/CFS cannot fulfill the recently passed work requirements. This disease is routinely misunderstood by policymakers who often lack adequate knowledge about the profound impact of infection-associated diseases, like ME/CFS and long COVID. As is often the case in the doctor's office, the risk of not being able to prove disability to policymakers is once again high -- and the possibility of our most disabled losing healthcare, after having lost so much else, is devastating.
We are not alone. Anyone living with a complex, historically stigmatized disease knows how difficult it is to secure a diagnosis, find knowledgeable medical providers, and access social services. People with ME/CFS -- and now long COVID -- often struggle to retain disability benefits because gatekeepers have not been properly educated about these diseases, and many doctors and lawyers lack expertise on how to properly document an ME/CFS disability claim. Many doctors have not been thoroughly educated about these sorts of "invisible disabilities" in medical school, including conditions like ME/CFS, Lyme disease, long COVID, and fibromyalgia. Meanwhile, research investment into studying ME/CFS has been dismal, leading to a lack of clear biomarkers and diagnostic tests.