https://www.frontiersin.org/articles/10.3389/fped.2019.00231/full
Medically Documenting Disability in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Cases
Barbara B. Comerford1 and Richard Podell2
1 Law Offices of Barbara Comerford, Paramus, NJ, United States
2 Robert Wood Johnson Medical School, Rutgers, The State University of New Jersey, New Brunswick, NJ, United States
02 July 2019
Patients with severe myalgic encephalomyelitis/Chronic fatigue syndrome (ME/CFS) experience debilitating physical and cognitive symptoms, which often result in the need to file disability claims. A significant number of ME/CFS patients are children or adolescents. ME/CFS patients often turn to physicians who are not trained to recognize and diagnose ME/CFS, and who might or might not understand that ME/CFS is a multi-system primarily physical illness. Such misperceptions can adversely affect the doctor-patient relationship, the clinical outcomes, as well as the results of disability claims. . . .
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Conclusion
The ME/CFS claimant must document the total adverse effect the constellation of symptoms has on his/her functional abilities and should provide that documentation in journal form to his treating physician during each visit. No claim can succeed without medical support and documentation of symptoms and functional limitations (physical and cognitive) by informed ME/CFS medical providers. The ME/CFS claimant medical record of functional limitations, and objective documentation of those limitations provided by the treating physician is crucial to support the ME/CFS disability claim.
If keeping a daily journal is not practical, we recommend that the patient or parent at each doctor visit submit 3 or 4 recent real life examples of episodes when the patient did “too much,” how the symptoms then flared and functional abilities declined, and how many hours or days were needed before symptoms and functional abilities regained their pre-exertional baselines. . . .
Comerford BB and Podell R (2019) Medically Documenting Disability in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Cases. Front. Pediatr. 7:231. doi: 10.3389/fped.2019.00231
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