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Long COVID has been called the first illness identified, named and defined by patients finding one other on social media like X/Twitter as well as an advocacy-research movement that changed medicine’s history. As a patient-made term and disease entity, Long COVID carries a unique potential to elevate the patient voice. The first research and accounts on persistent COVID symptoms and sequelae were produced by COVID survivors. In this chapter, I provide new insights into how Long COVID was defined as a multi-system disease entity by patients. I build on my lived experience as a patient-researcher who endured COVID in the early epicentre of Lombardy, Italy, and participated in the grassroots, international movement that brought Long COVID into the spotlight in 2020–2021.

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Long COVID: The Critical Role of Patient Advocacy-Research in Disease Recognition

  • 章节

  • 发表日期：

    2025年

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  • Elisa Perego

摘要

Long COVID has been called the first illness identified, named and defined by patients finding one other on social media like X/Twitter as well as an advocacy-research movement that changed medicine’s history. As a patient-made term and disease entity, Long COVID carries a unique potential to elevate the patient voice. The first research and accounts on persistent COVID symptoms and sequelae were produced by COVID survivors. In this chapter, I provide new insights into how Long COVID was defined as a multi-system disease entity by patients. I build on my lived experience as a patient-researcher who endured COVID in the early epicentre of Lombardy, Italy, and participated in the grassroots, international movement that brought Long COVID into the spotlight in 2020–2021.