Tschopp, Rea, König, Rahel S, Rejmer, Protazy et al. · Heliyon · 2023 · DOI
This Swiss study surveyed 169 ME/CFS patients to understand their experiences with the illness. Most patients were women, many couldn't work, and about half said their condition was getting worse over time. The study found that infections—especially viral ones like Epstein-Barr virus—often happened before people developed ME/CFS, and patients reported many different symptoms that got worse with certain triggers.
This study provides important real-world data on ME/CFS patient experiences in a developed healthcare system, documenting the substantial burden on work capacity and quality of life. The strong association between preceding infections and disease onset supports further investigation of infectious triggers, which could inform prevention and treatment strategies.
This study does not prove that infections cause ME/CFS—it only shows that patients recall infections before symptom onset. The cross-sectional design and reliance on retrospective recall cannot establish causation, and the lack of a control group means we cannot determine whether infection rates differ from the general population. Selection bias may skew findings since participants were recruited through a patient association.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
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