Gimeno Torrent, Xavier · Health care for women international · 2022 · DOI
This study examined letters written by ME/CFS patients to Spanish newspapers to understand why such a serious illness affecting millions remains poorly recognized by the public. The researchers found 13 different ways that society dismisses or ignores ME/CFS patients—including treating them with disrespect, refusing proper medical care, and making their illness invisible in public discussion. These patterns of dismissal work together to keep ME/CFS hidden and misunderstood.
This research reveals how societal attitudes and institutional practices actively contribute to ME/CFS remaining underrecognized and under-resourced. Understanding these patterns of 'symbolic violence' helps explain the gap between disease severity and public awareness, validating patients' experiences of dismissal and providing evidence for advocacy efforts to improve recognition and care.
This study does not prove these mechanisms cause ME/CFS to be unknown—it demonstrates correlative patterns in published letters rather than measuring actual public awareness or attitudes quantitatively. It does not establish causation or provide international comparisons, and letters to editors may not represent typical patient experiences or the general population's beliefs.
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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