text: 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 