This article in Social Science and Medicine examines the role of patients in naming and defining Long Covid. Patients with the condition, many of whom had ‘mild’ illness initially, used different evidence and advocacy to demonstrate a longer, more complex course of illness than was laid out in initial reports from Wuhan.
The authors argue that Long Covid has a strong claim to be the first illness created through patients finding one another on Twitter. In the space of a few months, the condition moved into to formal clinical and policy channels through different forms of media. The article focuses on how patients in the USA and UK claimed epistemic authority, and argues that patient knowledge needs to be included in defining, researching and treating Covid-19.