Jason, L A, Taylor, R, Wagner, L et al. · American journal of community psychology · 1995 · DOI
This study looked at how many people in the general community have ME/CFS by calling over 1,000 randomly selected households by telephone. Instead of relying on patients referred by doctors (which may miss people who can't afford care or distrust doctors), the researchers directly asked community members about their symptoms. They found that ME/CFS may be more common than previously thought, affecting about 0.2% of the population.
This research challenges the idea that ME/CFS is rare by using a more inclusive sampling method that captures people often missed by traditional medical referral systems—including those with limited healthcare access or those who have been dismissed by healthcare providers. For patients, this suggests ME/CFS may affect more people than previously recognized, potentially supporting calls for greater research funding and medical education.
This pilot study does not establish a definitive national or global prevalence rate for ME/CFS, as it was limited to a single community sample and used telephone methodology that may miss certain populations. The study cannot determine causation or establish which diagnostic criteria are most accurate—it only compares prevalence estimates across different definition approaches.
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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