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Research Articles

Incidence of myalgic encephalomyelitis/chronic fatigue syndrome in a large prospective cohort of U.S. nurses

, , &
Pages 159-166
Received 08 Mar 2017
Accepted 24 Apr 2017
Published online: 18 May 2017
 

ABSTRACT

Background: The incidence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the rates of both under-diagnosis and over-diagnosis, and the nature of the onset of the condition have not been assessed in large studies of health professionals.

Purpose: To determine the cumulative incidence of ME/CFS in a large population of health professionals, to examine the nature of the onset of the illness, and to estimate the frequency of both over-diagnosis and under-diagnosis of ME/CFS.

Methods: We sent an email questionnaire to participants in the Nurses’ Health Study II (NHS II), a large prospective cohort of female nurses. Forty-two thousand three hundred and ninety-four women completed the questionnaire, which included the 1994 Centers for Disease Control and Prevention (CDC) criteria for ME/CFS.

Results: One-hundred and two women (240 per 100,000 surveyed) developed an illness that met criteria for ME/CFS between 1989 and 2009. The onset of ME/CFS was gradual in 40.6%, sudden (following flu-like illness or other precipitating events) in 18.8%, followed emotional or physical trauma in 32.3%, and was uncertain in the rest. Under-diagnosis was common: only 15 (15%) of the women who met criteria for ME/CFS reported having been diagnosed. Over-diagnosis also was common: four times as many subjects had been diagnosed with ME/CFS by community doctors as actually met criteria. The distribution of symptoms was not different in comparing cases with a sudden onset to those with a gradual onset.

Conclusions: In this large cohort of female nurses, we found a low cumulative incidence of ME/CFS. Over-diagnosis and under-diagnosis were high, even in this medically sophisticated population.

Acknowledgements

In particular, we wish to thank Scott Carlson, Stella Lee and Harry Schroeder of CFI for facilitating the project.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

We wish to thank the Chronic Fatigue Initiative (CFI) of the Hutchins Family Foundation for its funding of this study.

Notes on contributors

Natalia Palacios

Natalia Palacios, ScD, is Assistant Professor in the Department of Public Health, University of Massachusetts, Lowell. Her primary research interest is the epidemiology of neurological disease, including Parkinson Disease, Multiple Sclerosis, cognitive function and brain health.

Kathryn C. Fitzgerald

Kathryn C. Fitzgerald, ScD, is a postdoctoral fellow in the Department of Neurology, Johns Hopkins University. Her primary research interest is the epidemiology of Multiple Sclerosis.

Anthony L. Komaroff

Anthony L. Komaroff, MD, is the Simcox-Clifford-Higby Distinguished Professor of Medicine at Harvard Medical School, and Senior Physician at Brigham & Women’s Hospital. He has spent much of the past 30 years on the problem of ME/CFS, as a clinician and investigator.

Alberto Ascherio

Alberto Ascherio, MD, DrPH, is Professor of Epidemiology and Nutrition at the Harvard School of Public Health. His primary research interest is the epidemiology of Multiple Sclerosis, Parkinson Disease, Amyotrophic Sclerosis, Depression and other neurological diseases.

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