McCorkell Lisa, S Assaf Gina, E Davis Hannah, Wei Hannah, Akrami Athena
Patient-Led Research Collaborative, Washington DC, USA.
Sainsbury Wellcome Centre, University College London, London, United Kingdom.
Pain Rep. 2021 Apr 13;6(1):e913. doi: 10.1097/PR9.0000000000000913. eCollection 2021.
A large subset of patients with coronavirus disease 2019 (COVID-19) are experiencing symptoms well beyond the claimed 2-week recovery period for mild cases. These long-term sequelae have come to be known as Long COVID. Originating out of a dedicated online support group, a team of patients formed the Patient-Led Research Collaborative and conducted the first research on Long COVID experience and symptoms. This article discusses the history and value of patient-centric and patient-led research; the formation of Patient-Led Research Collaborative as well as key findings to date; and calls for the following: the acknowledgement of Long COVID as an illness, an accurate estimate of the prevalence of Long COVID, publicly available basic symptom management, care, and research to not be limited to those with positive polymerase chain reaction and antibody tests, and aggressive research and investigation into the pathophysiology of symptoms.
很大一部分2019冠状病毒病（COVID-19）患者所经历的症状远远超出了轻症病例声称的两周康复期。这些长期后遗症已被称为“长新冠”。一群患者从一个专门的在线支持小组发展而来，他们组成了患者主导研究协作组，并开展了关于“长新冠”经历和症状的首次研究。本文讨论了以患者为中心和由患者主导的研究的历史与价值；患者主导研究协作组的形成以及迄今为止的主要发现；并呼吁做到以下几点：承认“长新冠”是一种疾病，准确估计“长新冠”的患病率，提供公开可用的基本症状管理、护理，且研究不应局限于聚合酶链反应和抗体检测呈阳性的患者，以及积极研究和调查症状的病理生理学。
