Patient-made Long Covid changed COVID-19 (and the production of science, too)
Background: Significant knowledge about long-term symptoms following SARS-CoV-2 infection has been produced by patients, which made Long Covid. Objective: To document and analyse such knowledge, outline how it changed understanding of COVID-19, and specify ethical and socio-political challenges associated with its development.Methods: Analysis of publicly available materials on Long Covid by people with Long Covid, largely in English and Italian, and across media and genre. Results: Those with Long Covid have made epistemic contributions across multiple media, including: oral, written and visual narratives, testimonies and arguments; quantitative and qualitative research; grey literature, essays, opinion pieces and commentaries; and advocacy and policy interventions. Discussion: Patient knowledge contributed to shifting assumptions concerning COVID-19 symptoms and disease pathways; phasing and duration; classification and naming of illness; disease morbidity; and who is affected. Patients’ use of a wide range of media challenged the conventional scientific production of epistemic claims. Many ethical and political challenges lie ahead, including exploitation of patients, their knowledge, and their data.Conclusions: Long Covid patient activism and research have been instrumental to key epistemic shifts that have changed understandings of COVID-19. They have also changed – possibly permanently – how science and medical knowledge are produced. Patient expertise must be routinely integrated into medicine beyond the current pandemic. We also need to ensure the ethical use of patient-led expertise and patient-produced data in Long Covid. Patient contribution: Both authors are patients and researchers with Long Covid, who have contributed to making ‘Long Covid', and to advocacy around its definition and recognition.