Typing myalgic encephalomyelitis by infection at onset: A DecodeME study

Area of Science:

• Investigating the heterogeneity of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in a large UK cohort.
• Utilizing population-based data to explore associations between patient demographics, illness onset, and ME/CFS characteristics.

Background:

• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is characterized by post-exertional malaise, unrefreshing sleep, and cognitive impairment.
• Despite affecting 0.2-0.4% of the population, ME/CFS lacks diagnostic laboratory tests, effective treatments, and clear understanding of its pathogenesis.
• Previous small-scale studies have not definitively determined if ME/CFS presents differently based on onset type, sex, or age.

Purpose of the Study:

• To investigate potential associations between ME/CFS severity or onset type and demographic factors (sex, age, illness duration, comorbidities, symptoms).
• To leverage the large DecodeME cohort for robust statistical analysis of ME/CFS patient characteristics.

Main Methods:

• The DecodeME study recruited 17,074 participants diagnosed with ME/CFS by a health professional.
• Data were collected via detailed questionnaires from UK-based participants.
• Logistic regression analysis was employed to examine associations between ME/CFS characteristics and patient factors.

Main Results:

• The cohort comprised 83.5% females, confirming the known sex bias in ME/CFS.
• Females reported more comorbidities than males.
• Being female, older age, and over 10 years post-onset were significantly associated with greater ME/CFS severity.
• ME/CFS onset following an unknown infection was significantly linked to active fibromyalgia.
• Five distinct ME/CFS onset types were analyzed: post-glandular fever, post-COVID-19, post-other infections, non-infectious onset, and unknown infection status.

Conclusions:

• DecodeME participants exhibit variations in symptoms, comorbidities, and illness severity.
• These differences are significantly stratified by sex-at-birth and the presence of infection around the time of ME/CFS onset.