Hanging Together, Falling Apart

Speaker: Dr Fadhila Mazanderani # The University of Edinburgh

3rd Mar 2014

15:30 - 17:00

Conference Room, David Hume Tower

Abstract

Since 1838, when the disease now known as Multiple Sclerosis (MS) was first depicted in anatomical illustrations, the aetiology of the condition has been a topic of considerable debate and contestation. Today it is widely, although by no means universally, believed that MS is an autoimmune disease in which the immune system mistakenly attacks the myelin sheath around the nerves in the brain and spinal cord, resulting in symptoms that range from vision, balance and bladder problems, to stiffness and loss of mobility, cognitive and emotional changes. What triggers such an immune response, however, remains unknown and despite the prominence of the autoimmune theory, alternative theories – sometimes presented as complementary to and sometimes in opposition to the autoimmune one – persist. Among them, resurfacing intermittently since the earliest clinical definition of the disease and proving particularly tenacious is the theory that MS is a disease caused by pathologies of the vascular system.  

In 2009, interest in the vascular dimensions of MS was reignited under the auspices of chronic cerebrospinal venous insufficiency (CCSVI) – a controversial ‘syndrome’ defined by Italian vascular surgeon Paolo Zamboni to describe abnormalities in the veins that drain blood from the brain and spinal cord. This has precipitated a wave of transnational patient activism lobbying for research into the relationship between CCSVI and MS. One of the most commented on features of this patient activism has been its online nature, with patients sharing, quantifying and aggregating their thoughts and experiences on websites, blogs, forums, Facebook pages, and YouTube. These online practices have been criticised by many as a dangerous source of misinformation that undermines evidence-based medicine. In contrast, based on my on-going research on CCSVI patient activism, I suggest that they should be read not as undermining evidence-based medicine, but rather as intervening, reconfiguring and blurring the boundaries between what counts as ‘evidence’ in different medical disciplines: neurology, vascular surgery and radiology. Building on this, I draw on extant theories of the ‘the body’ in STS (in particular, those of Haraway, Latour and Mol), to analyse how different enactments of patients’ bodies intersect with, problematize and mediate how MS is ‘known’, and consequently experienced and treated, in this context.

 

Speaker Biography

Fadhila Mazanderani joined STIS as a Chancellor's Fellow in September 2013. Her research interests sit at the intersection of Science and Technology Studies (STS), Medical Sociology and Anthropology, and she has conducted research on the use of information technology in relation to chronic illness and contemporary healthcare. She is currently working on a research project on internet use in relation to Multiple Sclerosis (MS), exploring how people affected by MS use internet technologies to seek out others’ experiences and share their own; how these practices of sharing and the knowledge generated through them interact with and challenge other forms of knowledge and expertise in this domain.