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ABSTRACT
Background: Myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) remains undiagnosed in up to 91% of patients. Recently, the United States-based Institute of Medicine (IOM) developed new diagnostic criteria, naming it systemic exertion intolerance disease (SEID).
Purpose: We examined how subjects fit SEID criteria and existing ME/CFS case definitions early in their illness.
Methods: A total of 131 subjects fitting 1994 Fukuda CFS criteria at the time of study recruitment completed a survey of symptoms they experienced during their first 6 months of illness. Symptoms were drawn from SEID and existing criteria (1994 Fukuda, 2003 Canadian Consensus Criteria (CCC), and 2011 Myalgic Encephalomyelitis-International Consensus Criteria (ME-ICC)). We calculated and compared the number/percentage of subjects fitting single or combinations of case definitions and the number/percentage of subjects with SEID experiencing orthostatic intolerance (OI) and/or cognitive impairment.
Results: At 6 months of illness, SEID criteria identified 72% of all subjects, similar to when Fukuda criteria (79%) or the CCC (71%) were used, whereas the ME-ICC selected for a significantly lower percentage (61%, p < .001). When severity/frequency thresholds were added to the Fukuda criteria, CCC and ME-ICC, the percentage of these subjects also fitting SEID criteria increased to 93%, 97%, and 95%. Eighty-seven percent of SEID subjects endorsed cognitive impairment and 92%, OI; 79% experienced both symptoms.
Conclusions: SEID criteria categorize a similar percentage of subjects as Fukuda criteria early in the course of ME/CFS and contain the majority of subjects identified using other criteria while requiring fewer symptoms. The advantage of SEID may be in its ease of use.
Acknowledgements
All authors were involved in the design of the study and writing of the manuscript; JLN and IV recruited subjects and collected the data, LC analyzed the data, and JGM and LC interpreted the results. The authors thank Dr Leonard Jason and Madison Sunnquist of DePaul University for their preliminary analysis of the data, Luciana Mendiola for her editorial expertise, and Donn Garvert, MS for his guidance on statistical analysis.
Disclosure statement
Dr. Chu co-authored the 2015 Institute of Medicine report, ‘Beyond myalgic encephalomyelitis/ chronic fatigue syndrome: redefining an illness.’
Additional information
Funding
Notes on contributors
Lily Chu
Lily Chu, MD, MSHS, has a background in internal/geriatric medicine and health services research. She has been involved with ME/CFS research since 2011 and is an advisory board member for the Stanford University ME/CFS Initiative.
Jane L. Norris
Jane L. Norris, PA-C, has provided care at and has been the Study Coordinator for the Stanford University ME/CFS Initiative for the last decade.
Ian J. Valencia
Ian J. Valencia, BS, served as the Clinical Research Coordinator for the Stanford University ME/CFS Initiative from 2011 to 2014. He currently works at Genentech as Country Study Specialist working on Oncology Clinical Trials.
Jose G. Montoya
Jose G. Montoya, MD, FACP, FIDSA, is Professor of Medicine in the Division of Infectious Diseases and Geographic Medicine at Stanford University School of Medicine. He created and leads the Stanford University ME/CFS Initiative. The Initiative's primary aim is to study the roles that infection and the immune response play in the symptoms of patients suffering from chronic, unexplained diseases.