Nightsong
Senior Member (Voting Rights)
ABSTRACT
Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition associated with substantial functional impairment. Although historically considered non-fatal, recent studies have suggested a link between ME/CFS and premature mortality.
Objective: To update and expand upon previous findings by analyzing reported deaths among individuals with ME/CFS from a public online memorial list.
Methods: We reviewed 505 entries from the National CFIDS Foundation memorial list as of October 2024. Two coders coded for age at death, sex, year, location, and cause of death.
Results: The average age of death was 52.5 years (SD = 16.7). Most individuals were female (73.0%) and resided in North America (68.9%). The most frequently reported causes of death were ME/CFS or complications (28.3%), suicide (25.4%), cancer (23.0%), and cardiovascular disease (14.2%). Suicide was associated with the youngest average age at death (43.3 years, SD = 14.4).
Conclusions: ME/CFS appears to be associated with notable mortality, with suicide, cancer, and cardiovascular causes of death being particularly common. Many entries list ME/CFS or its complications as a cause of death, indicating that notable proportions of affected individuals and those close to them perceive ME/CFS as directly involved in mortality. Increased clinical awareness and targeted screening may be particularly important.
Link
Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition associated with substantial functional impairment. Although historically considered non-fatal, recent studies have suggested a link between ME/CFS and premature mortality.
Objective: To update and expand upon previous findings by analyzing reported deaths among individuals with ME/CFS from a public online memorial list.
Methods: We reviewed 505 entries from the National CFIDS Foundation memorial list as of October 2024. Two coders coded for age at death, sex, year, location, and cause of death.
Results: The average age of death was 52.5 years (SD = 16.7). Most individuals were female (73.0%) and resided in North America (68.9%). The most frequently reported causes of death were ME/CFS or complications (28.3%), suicide (25.4%), cancer (23.0%), and cardiovascular disease (14.2%). Suicide was associated with the youngest average age at death (43.3 years, SD = 14.4).
Conclusions: ME/CFS appears to be associated with notable mortality, with suicide, cancer, and cardiovascular causes of death being particularly common. Many entries list ME/CFS or its complications as a cause of death, indicating that notable proportions of affected individuals and those close to them perceive ME/CFS as directly involved in mortality. Increased clinical awareness and targeted screening may be particularly important.
Link
