How and why patients made Long Covid

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.

Automated summary

Patients collectively created "Long Covid" and similar terms during the early months of the pandemic, demonstrating a longer and more complex illness course than initially reported. They used social media to spread their experiences and influence formal clinical and policy channels, showing how patients can contribute to changing the understanding and treatment of COVID-19.