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Paper short abstract

This presentation examines how Long Covid patient activists engage with and challenge evidence-based medicine. Through evidence-based activism activists mobilise and contest systematic reviews and guidelines to influence knowledge production, clinical practice, and definitions of enough evidence.

Paper long abstract

In 2021, the Swedish network Doctors to Doctors – clinicians who themselves live with Long Covid – published a ‘knowledge overview’ for clinical practitioners. They positioned this initiative as a response to the Swedish authorities being ‘too slow’ to finalise national guidelines. As an example of clinical recommendations 'from below', the overview illustrates how evidence-based medicine (EBM) and its epistemic tools – including clinical guidelines and systematic reviews – are enacted and contested within Long Covid activism.

This presentation examines how Doctors to Doctors and the Swedish Covid Association, a patient organisation representing Long Covid sufferers, engage with and challenge EBM to advance knowledge about Long Covid – including its underlying mechanisms, pathophysiology, and implications for healthcare – and to push for clinical practices informed by the latest available evidence. Drawing on interviews with patient-clinicians and association representatives, as well as reports, debate articles, and guidance for practitioners, I analyse how activists enact ‘evidence-based activism’ (Rabeharisoa et al. 2014). I show how they mobilise Long Covid research, rapid reviews and guidelines from other countries, and findings from related post-infectious conditions, to contest how Swedish authorities define, prioritise, and limit evidence.

By tracing these practices, I highlight how patient activists intervene in the production of Long Covid knowledge, shaping what counts as enough evidence while pushing for urgent action. The study seeks to contribute to STS scholarship on the interplay between patient activism and EBM, exploring how patient activists engage with 'epistemic tools' in a site of emerging and contested knowledge.