On this page, BHC provides resources, tools, and documentation guidance when assisting patients seeking disability claims.
ME/CFS & long COVID Disability Resources
ME/CFS and FM
- Documenting disability in ME/CFS (Podell, Dimmock, Comerford, 2019)
- Medically Documenting Disability in ME/CFS Cases (Frontiers in Pediatrics, 2019)
- Disability in ME/CFS (National Academy of Medicine Report, Appendix C.)
- Disability Resources on ME/CFS (CDC)
- Providing Medical Evidence for Individuals with ME/CFS (SSA)
- Evaluating Disability for Patients with Fibromyalgia (SSA)
U.S. ME/CFS Clinician Coalition
Tests to Support Disability Application (page 13)
Objective tests are a critical part of a successful disability case. Two tests that have been particularly helpful include:
– Neuropsychological evaluation to evaluate neurocognitive impairment
– 2-day cardiopulmonary exercise testing to evaluate functional impairment and postexertional malaise (Stevens)
Note: that these tests have distinctive findings for ME/CFS and need to be interpreted by someone knowledgeable about both the test and ME/CFS. These tests are expensive, can trigger an episode of post-exertional malaise, and may not be covered by insurance. But the tests are objective and have been successfully used in disability cases when other parts of the medical record were questioned.
Other objective tests that have been used as evidence in disability cases include Tilt Table test, EEGs, QEEGs, SPECT scans, PET scans, and MRIs (Podell).
Bateman Horne Center
Good Day/Bad Day Questionnaire: Communicating impaired function can be challenging for people ME/CFS, FM, OI, and long COVID. In addition, clinicians often lack the time and tools to fully grasp the extent of impairment.
BHC developed a simple questionnaire that helps patients to communicate the frequency, severity, and nature of their activity limitations. Estimating the number of better (GOOD) versus worse (BAD) days and listing specific examples communicates the range of function.
Hours of Upright Activity (HUA), or time spent with feet on the floor (sitting, standing, walking) versus time spent with feet elevated in 24 hours, takes a little thinking but clearly communicates tolerance for upright activity.