Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome

ABSTRACT

Background: There is a dearth of research examining mortality in individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Some studies suggest there is an elevated risk of suicide and earlier mortality compared to national norms. However, findings are inconsistent.

Objective: This study sought to determine if patients are reportedly dying earlier than the overall population from the same cause.

Methods: Family, friends, and caregivers of deceased patients were recruited. This study analyzed data including cause and age of death for 56 individuals.

Results: The findings suggest patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower age of death for suicide (M = 41.3 years) and cancer (M = 66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age].

Conclusions: Results suggest there is an increase in risk for earlier mortality in patients. Due to sample size and over-representation of severely ill patients, the findings should be replicated to determine if the directional differences for suicide and cancer mortality are significantly different from the overall population.

KEYWORDS:

• Myalgic encephalomyelitis
• chronic fatigue syndrome
• mortality
• suicide
• cardiovascular

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study was funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development [grant number HD072208].

Notes on contributors

Stephanie L. McManimen

Stephanie L. McManimen is currently a research project coordinator at DePaul University.

Andrew R. Devendorf

Andrew R. Devendorf is a research assistant at DePaul University.

Abigail A. Brown

Abigail A. Brown is a doctoral student in DePaul University’s clinical-community program.

Billie C. Moore

Billie C. Moore is an advocate for patients with ME and CFS.

James H. Moore

James H. Moore is an advocate for patients with ME and CFS.

Leonard A. Jason

Leonard A. Jason is the Director of the Center for Community Research at DePaul University.