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Paper short abstract

In the context of ME/CFS and Long Covid, this paper shows how those affected assemble the disease online amid ongoing contestation, contributing to patient-driven chronic care infrastructures (Langstrup 2013) that unfold through specific interactions with the medical sphere.

Paper long abstract

Accounts of ME/CFS and Long Covid often revolve around narratives of absence: absence of a single biomarker, recognized therapies, or medical recognition. This presentation challenges this narrative by foregrounding the presence emerging from such absence. Focusing on what is present highlights online activities and hashtag activism (Diedrich 2024), especially given higher levels of online engagement among people with ME/CFS compared to other conditions (Shortland 2024).

Those affected collectively participate in what I call an assembling of the disease, e.g., by developing language to signify bodily experiences and by sharing “subjective evidence” (Roth/Gadebusch-Bondio 2022), coping practices, medical advice, or clinical results. I argue that this online gathering contributes to patient-driven chronic care infrastructures (Langstrup 2013), unfolding through specific interactions with the medical sphere. The contribution asks how sufferers participate in the material-semiotic becoming of ME/CFS and Long Covid, and how they collectively co-create ways of doing disease (Mol 2002). Drawing on digital ethnography, interviews, articles, and works of literary fiction, I analyse the role of patient knowledge in these processes and what is specific to ME/CFS and Long Covid compared to other conditions.

Diseases are enacted within chronic care infrastructures, partially self-assembled but, for fully legitimate diagnoses, also already in place. Due to medical and social crises of credibility surrounding ME/CFS and Long Covid, these infrastructures are highly fragile. The talk concludes with reflections on how the online knowledge archive might be more effectively integrated into established medical infrastructures, shaping more resilient futures for people living with ME/CFS and Long Covid.