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Paper short abstract

Digital platforms reshape patient activism and lay expertise around contested diseases. Drawing on digital ethnography of Lyme communities on Facebook in Poland, this paper examines how platform affordances blur the boundaries between health activism and political influencing.

Paper long abstract

Digital platforms have become key arenas where contested diseases are negotiated, experienced, and politicised. In the case of Lyme disease, one of the most controversial infectious diseases in Europe, patients, activists, clinicians, and journalists mobilise online spaces to produce and circulate competing forms of expertise. Yet these practices increasingly unfold within platform infrastructures structured by algorithmic visibility, engagement metrics, and attention economies.

This paper examines how the platformization of health reshapes the production and legitimacy of lay expertise in the context of Lyme disease controversies in Poland. Drawing on digital ethnography of Facebook groups, interviews with patients and activists, and analysis of media discourse, I explore how people navigate what I conceptualise as the “Internet of Lyme.” Within these environments, personal testimonies, biomedical claims, alternative therapeutic knowledge, and media narratives circulate together, forming heterogeneous epistemic assemblages.

I argue that digital platforms are transforming earlier modes of patient activism centred on collective mobilisation and knowledge contestation. This transformation produces new forms of authority and vulnerability. On the one hand, platforms enable patients to challenge biomedical gatekeeping and build solidarities around contested illness. On the other, the logic of platform visibility can privilege emotionally charged narratives, blur distinctions between advocacy and influence, and intensify conflicts over expertise. By analysing Lyme disease as a platform-mediated knowledge controversy, the paper contributes to STS debates on digital health participation, epistemic authority, and the shifting boundaries between activism and influencing in contemporary platform societies.