2020 Citizen Science Event Book: #LongCovid

The Chinese Version "2020 年公民科學事件簿:#長新冠(#Long Covid) ": https://pansci.asia/archives/370282
The English full text : https://details-or-fragments.blogspot.com/2023/12/LCEventBook.html
Long Covid comes from a "patient-created term" in the spring of 2020. On October 6, 2021, the WHO announced its official definition. Although it used "post-COVID-19 condition", the Long Covid is still the most common term. This bottom-up grassroots movement of public participation in scientific concepts in online communities has reached the social conscience of the public and driven scientific development, and finally led to the establishment of relevant policies and scientific progress. This is what sociologists called "citizen science". 

How did it all begin?
Patient symptom stories: COVID-19 affects more than just the lungs
Long COVID Citizen Campaign: Responses from health services
The openness of online social media
The positive actions of these online community and the collective consensus reached are enough to convincingly prove to medical institutions, including the WHO, that Long Covid is a real disease despite the lack of traditional evidence-based medicine. A group of online citizens collectively wrote the first textbook on Long Covid in 2020. At this moment, we are witnessing the mass power of the online community, which not only promotes real changes in the real world, ensures recognition of medical care supply, but also stimulate a new scientific research stage.

中文版《2020年公民科学事件簿:#长新冠(#Long Covid)》：https://pansci.asia/archives/370282
英文全文：https://details-or-fragments.blogspot.com/2023/12/LCEventBook.html

长新冠(Long Covid)起源于2020年春季的「患者自创术语」。2021年10月6日，世界卫生组织(WHO)正式公布其官方定义，尽管采用了「新冠后状态(post-COVID-19 condition)」这一表述，但长新冠仍是最通用的术语。这场由网络社群发起、公众参与科学概念建构的自下而上草根运动，唤起了公众的社会良知，推动了科学发展，并最终促成相关政策出台与科学进步——这正是社会学家所称的「公民科学(citizen science)」。

这场运动究竟如何缘起？
患者症状叙事：新冠病毒不仅侵袭肺部
长新冠公民运动：医疗服务的回应
在线社交媒体的开放性

这些在线社群的积极行动与达成的集体共识，足以令包括世界卫生组织在内的医疗机构信服：即便缺乏传统循证医学证据，长新冠仍是一种真实存在的疾病。2020年，一群在线公民共同编撰了首部长新冠相关手册。此刻，我们正见证在线社群的集体力量：它不仅推动了现实世界的切实变革，保障了医疗供给的认可度，更催生了全新的科研阶段。