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Paper short abstract

In France, Long Covid gained rapid public and institutional recognition through early alignment between patient collectives, scientific experts, political actors and media arenas. This paper traces how this configuration formed and why its effects proved fragile over time.

Paper long abstract

Emerging from dispersed patients’ testimonies on social media, the category “Long Covid” gained national media coverage within a few months. Unlike conditions such as Lyme disease, endometriosis, and ME/CFS, its publicisation was unusually rapid and involved early collaborations between patient collectives, scientific experts, and health institutions. However, Long Covid’s entry into the public sphere has proven fragile, as medical experts have increasingly disputed what this condition is. This paper analyses this dynamic, drawing on French written press and interviews with journalists, public decision-makers, physicians, and researchers.

We first examine how the credibility of Long Covid was forged during the Covid-19 pandemic. With the support of prominent medical and political figures, patient collectives gained traction online and in the written press, which amplified testimonies, claims, and ongoing studies, thereby increasing pressure in the political arena. This configuration prompted health institutions to recognise the condition and to incorporate patient organisations’ inputs into the drafting of recommendations and clinical guidelines, before biomedical evidence stabilised. We then examine the fragility of this recognition over time, as controversies develop on the aetiology and the physiopathology of the condition, opposing some medical experts who take sides with patient organisations to others who question patients’ experiential accounts. This case shows the importance of socio-technical configurations that either maintain or threaten the recognition of emergent and contested conditions. We suggest that the durability of recognition depends not only on scientific evidence, but also on sustaining alliances and stabilising the boundaries of what is deemed credible explanation under uncertainty.