Lack of Knowledgeable Healthcare Access for Patients with Neuro-endocrine-immune Diseases

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By Tina M. Tidmore et al.
 

Abstract:
 

Complex chronic diseases of the neuro-endocrine-immune systems include Myalgic Encephalomyelitis (ME), chronic fatigue syndrome (CFS), Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, and post-treatment Lyme disease syndrome (i.e. chronic Lyme disease). Early diagnosis and treatment are important to producing optimum outcomes in these patients. In the summer of 2012, people who identify themselves as having ME/CFS, fibromyalgia, or post-treatment Lyme disease / chronic Lyme disease answered a 7-question survey that was distributed through emails to patient support groups, social media, and patient-oriented websites.

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.   

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