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Short abstract:

Building on an analysis of the different experiences, paradigms, and advocacy movements around post-COVID-19, in this paper we map the post-COVID-19 route to disease acceptance. In doing so, we provide valuable insight into the politics of diagnosis(-making).

Long abstract:

COVID-19 has brought an unprecedented amount of attention to post-infection disease or post-acute sequelae (ongoing, relapsing, or new symptoms present long after infection). Where many of these diseases have long struggled for attention and recognition, the widespread experiences of post-, or long, COVID-19 have relatively quickly led to a significant level of acceptance. Whilst many patients still feel unseen, unheard, and stigmatised, an increasing number of resources are being directed towards a better understanding of post-COVID-19. With a visible patient advocacy movement and different hypotheses on the pathogenesis and core symptoms, the diagnosis is currently being constructed. Building on an analysis of the different experiences, paradigms, and advocacy movements around post-COVID-19, in this paper we map the post-COVID-19 route to disease acceptance. Combining a document analysis with preliminary empirical findings, we focus on the emerging forms of knowledge-making and changing configurations between the different medical stakeholders, lay or patient experiences and advocacy, and (online) media in the co-production of this new illness concept. The current construction of the post-COVID-19 diagnosis, and its appeal to other patient groups that are seeking validation, provides valuable insight into the politics of diagnosis(-making). The strategic (re)positioning of post-COVID-19 and adjacent illnesses (e.g., other contested and post-infection diseases such as myalgic encephalomyelitis/chronic fatigue syndrome) deserves scrutiny to understand how diagnoses are shaped when much is still unknown and uncertain. Considering post-COVID-19’s high prevalence, how the diagnostic boundaries will be drawn will significantly impact the distribution of resources and our understanding of illness, cure, and care.