Documenting disability in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

BACKGROUND: According to the 2015 National Academy of Medicine report, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) "is a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients." ME/CFS affects between 1 and 2.5 million Americans, leaving as many as 75% unable to work due to physical, cognitive and functional impairment. Unfortunately, many doctors and lawyers lack the knowledge of how to properly document an ME/CFS disability claim, leaving patients unable to access disability benefits. OBJECTIVE: The goal of this article is to summarize the approaches used by experienced clinicians and lawyers in successful ME/CFS disability claims. METHODS: The authors reviewed the types of US disability insurance programs and the evidence commonly required by these programs to demonstrate ME/CFS disability. RESULTS: This article summarizes the range of methods used in successful US disability claims, which include documentation of the functional impact of post-exertional malaise and the use of methods that provide objective evidence of impairment. CONCLUSIONS: Medical providers and lawyers can use these tested methods to obtain disability benefits for people with ME/CFS. Physical therapists, occupational therapists, and other specialists play an important role in providing objective evidence for ME/CFS disability claims.