University of Glasgow School of Geographical and Earth Sciences, University of Glasgow, United Kingdom.
University College London Institute of Archaeology, UCL, United Kingdom.
Soc Sci Med. 2021 Jan;268:113426. doi: 10.1016/j.socscimed.2020.113426. Epub 2020 Oct 7.
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.
患者在疫情初期共同创造了“长新冠”和同源术语“长程新冠”。许多最初患有“轻症”的患者利用各种证据和主张，证明了比武汉最初报告更长、更复杂的疾病过程。长新冠强烈要求成为第一个通过患者在 Twitter 上相互发现而产生的疾病：它在短短几个月内从患者，通过各种媒体，转移到正式的临床和政策渠道。这两位患有这种疾病的患者最初对长新冠的描述侧重于英国和美国的参与者，并展示了患者如何调动认识论权威。患者的知识需要纳入 COVID-19 的概念化、研究和治疗中。
