Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome

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Sean

Senior Member
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7,378
TiredSam said:
If you don't accept treatment for your mental condition, you have just proved that you have a mental condition.
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Where to start?

That they even think it is okay to assert this 'reasoning', is astounding.

Only slightly less astounding than the deafening silence from the Ben Goldacres of the world about these appalling charlatans and thugs.

If this isn't the worst of cultish woo, flourishing apparently unchecked right at the heart of the mainstream medical-scientific establishment in the UK, then what the hell is it, Mr Goldacre?

TiredSam said:
What next, diagnosis by ordeal of the cursed morsel?
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Not sure what that is, and not sure I want to find out. But it sounds bad. o_O :cautious:
 
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AndyPR

Senior Member
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Guiding the lifeboats to safer waters.
I would assume that the BPS crowd use a similar diagram to this in order to diagnose us
mpgraph.jpeg
 
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Jenny TipsforME

Jenny TipsforME

Senior Member
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Bristol
Although it is a spiral of injustice, the bit about expressions is relevant. Sometimes advocacy effort does more harm than good because the (righteous) anger expressed is just used as evidence for the prosecution. Or previous experience of not being listened to makes us anxious about contact with doctors and then we come across as neurotic in appointments.

I was anxious leading up to the neurology appointment I had yesterday. I've heard neurologists can be prone to this type of epistemic injustice. It is definitely something I've experienced with other doctors. Actually I did think through how to present myself for maximum credibility. The biggest gamble was taking in detailed typed notes, which could definitely go either way. However, the high likelihood that brainfog would undermine explaining anything convincingly swayed me to take notes.

Fortunately I had a very good experience of the doctor listening to me and he was proactively keen to keep my notes (I listed features of more unusual symptoms/episodes, my theories and questions). He seemed to accept I had read academic papers and it wasn't an :rolleyes: Dr Google scenario. This stood out as atypical but it should be a given that patients feel their doctor listens to them.
 
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IreneF

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San Francisco
A friend sent me a link. It was some of the most turgid prose I've read since university and overly abstract. It basically restated what most people here have experienced. I didn't feel it went far enough, because so many people have either been told not to seek care or decided on their own to avoid contact with medical providers, which is not what springs to mind when you encounter the term "epistemic injustice". At least it appeared in the BMJ where it might get some attention.
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
I'm finding this article really heavy going, here's a quote, for example, and my attempt to translate it with dictionary help:

'In this section, we define Fricker’s key concepts of testimonial injustice and hermeneutical injustice which—as Fricker has argued—may infringe on medical professionalism and lead to patient harm. More specifically, we suggest that the aetiological and nosological uncertainty of CFS/ME arguably affects healthcare professionals’ tacit judgements of the testimonies of those reporting CFS/ME symptoms.'

My translation uses the following definitions:
testimonial: a statement about the character or qualities of someone or something.
testimonial injustice, wherein a speaker receives an unfair deficit of credibility from a hearer owing to prejudice on the hearer's part.
Hermeneutical injustice, the kind of injustice experienced by groups who lack the shared social resources to make sense of their experience. One consequence of such injustice is that such individuals might be less inclined to believe their own testimony
Aetiological: 1. the philosophy or study of causation. 2. the study of the causes of diseases. 3. the cause of a disease
Nosology ; 1 : a classification or list of diseases. 2 : a branch of medical science that deals with classification of diseases.

My translation:

Nobody know's what's wrong with us, and doctors with preconceived ideas don't listen to or believe what we tell them, leaving us and others doubting our own experience. This harms patients and is unethical.

But seriously, I do understand this is an academic philosophical paper in an academic philosophy journal, so has to use the jargon. I think I get the gist from the abstract. I hope it has useful effects.
I might have another go at reading the rest of it. I rather enjoy the challenge.

Edit to add: I've finished reading the article. It's not all as difficult as the bit I quoted. There is lots of good (but very depressing) information about patient, doctor and medical student perspectives and the need for better training.
 
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