Epistemology of the Clinic

The following is the first part of a multi-part series on the way non-professional scientists have enabled significant scientific progress in the understanding of their disease. In this part, I begin to describe the nature of their activities. In future parts, I will explain why what I call extitutional science enables scientific progress, and what this means for the way in which scientific activities ought to be organised.  *** Philosophers of science have on the whole not been very interested in the science done by people who aren’t affiliated with and/or employed by scientific institutions: what we might call non-professional or extra-academic science (Koskinen 2023: 413). But the work that has been done on this topic can be fruitfully divided into two camps. The first have tended to theorise non-professional science, which they tend to call participatory science , as in some sense subsumed under institutional science (Dunlap et al. 2021, Evans and Potochnik 2023, Potochnik ...

The person with myalgic encephalomyelitis (ME) is a woman. She is frail, weak, confused, and impressionable, and at the same time, she is unstable, confrontational, angry, and unreasonable: she cannot be reasoned with, she is emotional, she is neurotic. The life she leads is wrong in some way: she is a lesbian, she is unmarried, she is over-educated, she is a poet or artist, or if she is married, with children, she hates it, and regardless, she is unhappy, she drinks, she self-medicates, she struggles. She drains the resources of those around her, both financial and emotional, with her incessant needs, her endless demands for attention, her constant criticisms of everything and everyone. She is also rich---rich enough never to face housing or food insecurity---and she is white. She is a hysteric. Much has been said about the way the ideological construction of hysteria has been wielded by state and medical institutions to harm bourgeois and middle class white women such as myself: ou...

Sick people often report frustration about their encounters with doctors: they report not being listened to, not being taken seriously, not being able to successfully communicate their issues, not getting answers to their questions, and more. In 2014, Havi Carel and Ian James Kidd published a paper where they analysed this phenomenon in terms of epistemic injustice. This paper has been enormously influential, to the point where it has become the main lens through which patient frustrations with their doctors is analysed today. In this blog post, I want to highlight some of the limits of this approach. The notion was introduced by Miranda Fricker in her 2007 book Epistemic Injustice . She defines epistemic injustice as a form of injustice that affects the subject “specifically in their capacity as a knower”. This is somewhat obscure, but the two subtypes of epistemic injustice that she defines help shed some light on the phenomenon she's trying to elucidate. Firstly, she discusses ...

People with myalgic encephalomyelitis (ME) usually react negatively to the suggestion that our illness is psychosomatic. Psychologisers often retort that our reaction originates in and reveals negative attitudes towards mental illness. Before examining this rhetorical device, we need to be clear on why people with ME actually resist the psychologisation of our illness. As I explained in a previous blog post , state and medical institutions together with insurance companies have controversialised ME: they have buried the unequivocal evidence that ME is a physical illness in an effort to avoid funding research into treatments, medical care, and social support for the millions of people disabled by ME. Their main strategy has been to fund, reward, and amplify the fraudulent research of a handful of psychiatrists arguing that ME is nothing but “false illness beliefs” held as a result of social influence in order to reap the supposed benefits of the “sick role”. The resulting widespread na...