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

Work. 2020;66(2):339-352. doi: 10.3233/WOR-203178.

Abstract

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.

Keywords: Chronic Fatigue Syndrome; ME/CFS; Myalgic Encephalomyelitis; disability; functional impairment.

MeSH terms

  • Disability Evaluation*
  • Disabled Persons / legislation & jurisprudence
  • Documentation / methods*
  • Documentation / trends
  • Fatigue Syndrome, Chronic / complications*
  • Fatigue Syndrome, Chronic / epidemiology
  • Humans