Modern Clinical Medicine Research

Download PDF (207.6 KB) PP. 28 - 35 Pub. Date: April 13, 2017

DOI: 10.22606/mcmr.2017.11005

• Madison Sunnquist
  Center for Community Research, DePaul University, Chicago, Illinois, United States
• Laura Nicholson
  Center for Community Research, DePaul University, Chicago, Illinois, United States
• Leonard A. Jason^*
  Center for Community Research, DePaul University, Chicago, Illinois, United States
• Kenneth J. Friedman
  Green Mountain College, Poultney, Vermont, United States

The current study sought to better understand the experience of individuals with myalgic
encephalomyelitis (ME) and chronic fatigue syndrome (CFS) in accessing care for their debilitating
illness. Of 898 participants, less than half had ever seen an ME or CFS specialist, though 99% of
participants were interested in specialist care. Participants cited geographic and financial barriers as
most frequently precluding access to specialists. Furthermore, satisfaction with specialist care greatly
exceeded satisfaction with non-specialist care. These findings suggested that individuals with ME and
CFS represent a medically-underserved population, due to lack of available care. The CFS Advisory
Committee and NIH Pathways to Prevention Working Group recommended the creation of ME and
CFS Centers of Excellence to improve the healthcare access of patients with ME and CFS. The
current study documents the need for these centers, as they would ameliorate geographic and
financial barriers to quality care.

Myalgic encephalomyelitis, chronic fatigue syndrome, healthcare access, specialist care,
satisfaction with care, centers of excellence, medically-underserved population

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