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)
Long COVID
Assessing Impairment
U.S. ME/CFS Clinician Coalition
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
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.
Top Provider Resources
Care Considerations
- ER & Urgent Care Considerations for ME/CFS (PDF)
- Low-Dose Naltrexone (LDN): A Note to Providers (PDF)
- Caring for People with Severe ME/CFS (PDF)
Orthostatic Intolerance
- 10-Minute NASA Lean Test (passive stand test)
- Orthostatic Intolerance (basics)
- Assessing Orthostatic Intolerance (6 min video)
- Managing Orthostatic Intolerance (5 min video)
Post-Exertional Malaise (PEM)
- PEM/PESE 7-part video series (NEW!)
- Understanding PEM (videos, Doctors with M.E.)
- ME/CFS Crash Survival Guidebook
Pre-visit Forms for Patients
- Good Day/Bad Day Questionnaire (HUA & function)
- Health Assessment Form
Medical Education: Project ECHO
- Long COVID & Post-Viral Syndromes (video, slides)
- Post-Exertional Malaise/PEM (video, slides)
- Part 1: Orthostatic Intolerance Assessment (video, slides)
- Part 2: Managing Orthostatic Intolerance (video, slides)
- Sleep Disturbances/Dysregulation (video, slides)
- Mast Cell Activation Syndrome/MCAS (video, slides)
- Cognitive Impairment (video, slides)
- Anxiety & PTSD (video, slides)
- Chronic Pain (video, slides)
- Post-Viral Gastrointestinal Disruption & Dysfunction (video, slides)
- Pediatric Long COVID (video, slides)
- COVID-19 and Gynecological Health (video, slides)
- What Pathological Changes May Cause the Symptoms of Long COVID (video, slides)
- Headaches in Post-Acute Sequelae of COVID-19 (video, slides)
Note: Live ECHO sessions are reserved for healthcare professionals only. Sessions include: didactic, case presentations and CME.