Date: August 2024
The Lyme Resource Centre supported a new and provocative collaboration: Lyme disease patient advocate Morven-May MacCallum and medical anthropologist Dr Ritti Soncco gave a joint presentation for the first time.
Their presentation was “Its Hand Around My Throat: A Performative Dialogue on the Lyme Disease Epidemic in Scotland” and was presented at The 4th World Congress of Environmental History in Oulu, Finland on 22nd August 2024.
This presentation was a revolutionary discussion because it’s the first time a medical anthropologist invited a patient-advocate to co-present before an anthropological conference.
The talk covered Dr Soncco’s PhD research on chronic Lyme disease in Scotland, the Lyme wars, the opposition between biomedicine and Lyme-literate medicine, and the theory she developed during her PhD - biosocial fragilities, which discusses what it means when advocacy work is carried out by chronically-ill persons; the irony of advocacy work being dependent on vulnerable peoples’ health; and the ways in which this makes advocacy work fragile.
These insightful topics were interjected by patient experience, delivered by Morven-May, who expressed the lived experience of those suffering with Lyme disease. Morven-May read from her novel FInding Joy to create an emotive insight into the reality of the challenges of living with Lyme disease. Her readings included sections of her book which illustrate the challenges of the physical and cognitive debilitation of Lyme disease and from a section of her book which gives the Lyme bacteria a voice, allowing the bacteria to speak directly to the audience.
Together, Ritti and Morven-May created a beautiful blend of scientific evidence coupled with the authentic and emotive voice of those living with Lyme disease. We thank the Lyme Resource Centre, without whom this trip would not have been possible, for supporting our ongoing work on chronic Lyme disease in Scotland.
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