The contested meaning of long COVID - Patients, doctors, and the politics of subjective evidence

In our article, we reconstruct how the patient-made term long COVID was able to become a widely accepted concept in public discourses. While the condition was initially invisible to the public eye, we show how the mobilization of subjective evidence online, i.e., the dissemination of reports on the different experiences of lasting symptoms, was able to transform the condition into a crucial feature of the coronavirus pandemic. We explore how stakeholders used the term long COVID in online media and in other channels to create their illness and group identity, but also to demarcate the personal experience and experiential knowledge of long COVID from that of other sources. Our exploratory study addresses two questions. Firstly, how the mobilization of subjective evidence leads to the recognition of long COVID and the development of treatment interventions in medicine; and secondly, what distinguishes these developments from other examples of subjective evidence mobilization. We argue that the long COVID movement was able to fill crucial knowledge gaps in the pandemic discourses, making long COVID a legitimate concern of official measures to counter the pandemic. By first showing how illness experiences were gathered that defied official classifications of COVID-19, we show how patients made the long COVID term. Then we compare the clinical and social identity of long COVID to that of chronic fatigue syndrome (ME/CFS), before we examine the social and epistemic processes at work in the digital and medial discourses that have transformed how the pandemic is perceived through the lens of long COVID. Building on this, we finally demonstrate how the alignment of medical professionals as patients with the movement has challenged the normative role of clinical evidence, leading to new forms of medical action to tackle the pandemic.

Automated summary

In this article, we examine how the term "long COVID" coined by patients became widely accepted in public discourses. We show how subjective evidence shared online played a crucial role in recognizing and understanding long COVID as a key feature of the pandemic. Our study investigates how stakeholders utilized the term in online media to create illness and group identity, while also distinguishing the personal experience of long COVID from other sources. We argue that the mobilization of subjective evidence filled knowledge gaps and legitimized long COVID as a concern for official measures against the pandemic.