Emily
Editor, Senior Moderator
Callard F., Perego E. How and why patients made Long Covid. Soc. Sci. Med. 2021;268:113426.
Abstract
Patients collectively made Long Covid ? and cognate term ?Long-haul Covid? ? in the first months of the pandemic. Patients, many with initially ?mild? illness, used various kinds of evidence and advocacy to demonstrate a longer, more complex course of illness than laid out in initial reports from Wuhan. Long Covid has a strong claim to be the first illness created through patients finding one another on Twitter: it moved from patients, through various media, to formal clinical and policy channels in just a few months. This initial mapping of Long Covid ? by two patients with this illness ? focuses on actors in the UK and USA and demonstrates how patients marshalled epistemic authority. Patient knowledge needs to be incorporated into how COVID-19 is conceptualised, researched, and treated.
Keywords: Chronic illness, Citizen science, COVID-19, Long Covid, Long-hauler, Patient activism, Patient groups, SARS-CoV-2
Abstract
Patients collectively made Long Covid ? and cognate term ?Long-haul Covid? ? in the first months of the pandemic. Patients, many with initially ?mild? illness, used various kinds of evidence and advocacy to demonstrate a longer, more complex course of illness than laid out in initial reports from Wuhan. Long Covid has a strong claim to be the first illness created through patients finding one another on Twitter: it moved from patients, through various media, to formal clinical and policy channels in just a few months. This initial mapping of Long Covid ? by two patients with this illness ? focuses on actors in the UK and USA and demonstrates how patients marshalled epistemic authority. Patient knowledge needs to be incorporated into how COVID-19 is conceptualised, researched, and treated.
Keywords: Chronic illness, Citizen science, COVID-19, Long Covid, Long-hauler, Patient activism, Patient groups, SARS-CoV-2