Madison Sunnquist, Laura Nicholson, Leonard A. Jason, Kenneth J. Friedman
http://www.isaacpub.org/PaperInform...olume 1, Number 1, April 2017&JShortName=MCMR
Abstract
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.
http://www.isaacpub.org/PaperInform...olume 1, Number 1, April 2017&JShortName=MCMR