Framing Long Covid through Patient Activism in the United States: A Qualitative Study

In 2020, when COVID-19 patients first recognized their complex and progressive symptoms, patient activists defined “Long Covid” on social media. While patient support groups are by no means new, the predominance of online support groups and those leveraging the power of social media has become a defining characteristic of Long Covid. In this article, we argue that naming Long Covid served as a powerful conduit of legitimacy for patient activists in media, medicine, and policy. We conducted 57 in-depth qualitative interviews with patients (n=22), clinicians (n=20), and policy and academic experts (n=15). We found naming was not a primary area of contention. In contrast, patients found pride and a sense of identity within the terms. Many clinicians struggled with diagnostics because Long Covid lacks clear biological tests, while patients were consistently disappointed by the lack of positive tests and clarity around their symptomatology. The heterogeneity of the Long Covid experience, as well as the diversity of symptoms, further provides opportunities for contestation and disbelief among clinicians and policymakers not only in diagnostics but also in disability rights. Thus, the power of patient activism has transformed how the condition is perceived among and between patients, clinicians, policymakers, and the media in unprecedented ways that will likely have longstanding impacts on how IACCs are viewed in medicine and the public alike.