From the Journal of Family Medicine & Community Health, 18 September 2016 (Links to pdf containing the complete text),
Patient Perceptions Regarding Possible Changes to the Name and Criteria for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis
Leonard A. Jason*, Laura Nicholson, and Madison Sunnquist
Center for Community Research, DePaul University, USA
Leonard A Jason, Center for Community Research, DePaul University, 990 W Fullerton Ave #3100, Chicago, Illinois, USA/
For decades, researchers and patients have been debating the terms and criteria for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME). This has led to considerable difficulties in clearly communicating to the public the nature of these illnesses, and has produced considerable methodological challenges for researchers who study these illnesses.
If different laboratories do not employ comparable criteria to select patients, this will have negative consequences for understanding epidemiology, etiology, diagnostic and treatment approaches.
In part due to this ongoing controversy, the Institute of Medicine in 2015 recommended new criteria and a new name. The present study surveyed a relatively large sample of patients both in and outside the US to determine attitudes toward the primary names and criteria that have been used to characterize these patients.
Assessing patient opinions is an activity that might help provide gatekeepers (i.e., federal officials, scientific and patient organizations) with valuable input for ultimately clarifying this debate regarding names and criteria.
from ME Association