Of the 1,294 respondents in the continental United States, 54.4 percent (n=705) said they were not satisfied with the medical care they were receiving because their physicians had not been adequately trained about their disease. Also, 71 percent (n=919) of the respondents in the continental Unites States visited four or more physicians before they received an accurate diagnosis. Additionally, 63 percent (n=815) spent two years or more searching before being appropriated diagnosed. These patients see or have seen the following medical professionals the most: internists / general practitioners, neurologists, rheumatologists, massage therapists, physical therapists, acupuncturists and psychologists.
The current U.S. medical system has few specialty clinics for ME/CFS, fibromyalgia, and post-treatment Lyme disease syndrome / chronic Lyme disease, and there is no specialty training about these diseases as a group in medical schools. As a result, the majority of these patients feel they do not have access to adequately knowledgeable clinicians.
It is necessary to increase medical school education for these complex, multi-system diseases through a new specialty or existing specialty discipline because they are not currently embraced by existing specialties. There is also a need to establish additional multi-system disease specialty clinics in order to improve upon the notable delays in disease diagnosis and treatment.
Source: Tina M. Tidmore, Leonard A. Jason, Suzanne So , Abigail Brown , Lori Chapo-Kroger , Marly C. Silverman. Lack of Knowledgeable Healthcare Access for Patients with Neuro-endocrine-immune Diseases. Frontiers in Clinical Medicine.