Striking the balance with epistemic injustice in healthcare: the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis - Eleanor Byrne - Mar 2020

Sly Saint

Sly Saint

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Abstract

Miranda Fricker’s influential concept of epistemic injustice (Oxford University Press, Oxford, 2007) has recently seen application to many areas of interest, with an increasing body of healthcare research using the concept of epistemic injustice in order to develop both general frameworks and accounts of specific medical conditions and patient groups. This paper illuminates tensions that arise between taking steps to protect against committing epistemic injustice in healthcare, and taking steps to understand the complexity of one’s predicament and treat it accordingly. Work on epistemic injustice is therefore at risk of obfuscating legitimate and potentially fruitful inquiry. This paper uses Chronic Fatigue Syndrome/Myalgic Encephalomyelitis as a case study, but I suggest that the key problems identified could apply to other cases within healthcare, such as those classed as Medically Unexplained Illnesses, Functional Neurological Disorders and Psychiatric Disorders. Future work on epistemic injustice in healthcare must recognise and attend to this tension to protect against unsatisfactory attempts to correct epistemic injustice.
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https://link.springer.com/article/10.1007/s11019-020-09945-4
 
I'll admit that my eyes glazed over after a while, as it was too word-y for me.
Conclusion
I have highlighted two problems with how the concept of testimonial injustice might be applied to healthcare, using the example of CFS/ME. Although a useful concept which has already aptly shown how CFS/ME patients are vulnerable to suffering from epistemic harm, I have resisted claims that identify testimonial injustices where the epistemic problem can be just as plausibly explained by the medical professional exercising appropriate medical sensitivity within the context of a vast conceptual impoverishment. I have also argued that there is a problem with the idea of the CFS/ME patient as epistemically authoritative over their first-person lived experience, since their status as ‘knower’, of even their first-person lived experience, is highly complex.

I finished by suggesting that the process of gaining epistemic insight into CFS/ME ought to be deeply collaborative. Some researchers have suggested that, in psychiatry and medicine more broadly, there ought to be more collaboration between all ‘stakeholder groups’ (Fulford et al. 2014, p. 113). There are certainly promising avenues for further careful research into what the epistemic contributions of patients can reveal about CFS/ME. In the absence of a biomedical breakthrough, collaboration between patients, researchers, clinicians and medical professionals may prove to be the most effective way to enrichen the conceptual understanding of CFS/ME, empowering both patients and medical professionals.
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If I understand correctly what I did read, in essence we shouldn't be so nasty to medical professionals because they are doing their best in an area where there isn't a lot of certainty. Which is fine, but medical professionals claim a lot of certainty where there isn't any, and act on that basis, and that is often to our detriment. It came across to me as a very long cry, "won't someone think of the poor medical professionals in all of this?!"
 
Andy said:
I'll admit that my eyes glazed over after a while, as it was too word-y for me.
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Yep. I had a go. Same reaction.

The takeaway I got from the limited bit that sank in - there's a double whammy to the injustice-

epistemic - in that because we're ME patients we're no longer credible witnesses to our own experience.

hermeneutic - in that there aren't any tests available and also possibly because the language/descriptions are too vague. I'm thinking about the fatigue word here in particular.

To a certain extent I can see that many of the GPs and docs we see are being mislead by a system & authorities they trust. They believe they are doing what is in our best interests. It will horrify some when they realize the cruelty they have inflicted for our own good.

On the other hand, they are the one's with the expertise and training and it is up to them and not the patient to make efforts to bridge the gap in understanding.
 
Eleanor Alexandra Byrne is currently working on ME/cfs grief and depression. (According to linked in)

It also says: I research philosophical issues surrounding ME/cfs, grief and depression primarily from a phenomenological perspective.

My take is that viewing others illness through a philosophical perspective is too removed and academic to be of any real value to the lives of people living with the illness.

That's not to say it can't be of value on a group (systemic) level in correcting an injustice but this is not what is happening here.

And while I'm not any good at taking in this sort of thing any more I'd say that she is abusing the thinking behind the paper by Fricker quoted by @Snow Leopard .
 
I thought that there were a few fair points in there (some of the points on parts of the Blease paper resting on quotes that could be read in different ways), but that the paper itself was hugely annoying because it ignored the most important issues. Many of those within medicine and medical research have an incentive to exaggerate their expertise and mislead patients. Writing about epistemic injustice around CFS/ME without mentioning any of the most important examples of this is quite annoying - especially given some of the people uncritically cited.

Is framing a discussion surrounding epistemic injustices faced by Me/CFS patients according to the prejudices of the British academic community another epistemic injustice? I suspect it's the most effective way to get ahead in UK academia.
 
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I have only looked at the bits cited above but I am quite clear this is pernicious tripe. It follows the popular trend of 'be nice to everyone because that way someone will pay me to bullshit and play act'. The same attitude is the reason why my daughter has TB because being nice to each other is more important to public health workers than sorting out a serious disease. The same thing is on the radio about coronavirus.

Time it was called out for what it is. It certainly isn't philosophy.
 
Another piece from Eleanor Byrne that I think takes a rather stigmatising view of the controversies around ME/CFS and Long Covid, posted on a KCL blog founded by Carmine Pariante:
https://www.inspirethemind.org/blog...ovid-the-need-to-challenge-stigma-at-its-root

If you're within British academia and talking about ME/CFS being stigmatised, but failing to note the problems caused by the bad behaviour of those within British academia, then you're part of the problem imo.
 
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Esther12 said:
Another piece from Eleanor Byrne that I think takes a rather stigmatising view of the controversies around ME/CFS and Long Covid, posted on a KCL blog founded by Carmine Pariante:.
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This is a decades old narrative that pre-dates CFS. Whenever anyone says something is not psychological or criticises psychological treatment approaches, they assume it must be due to anti-psychology stigma or beliefs.

What they are really showing is a lack of understanding of patients beliefs.
 
I am not claiming here that we are in a position to say that these conditions are psychiatric conditions, in poignant words, “whatever that means, though it is rarely something good”. Rather, it is true that we are not in a sufficiently strong epistemic position to rule out that psychiatric research and treatment can help improve the lives of patients. For that reason, we should remain open minded.
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Sure, we can remain open-minded. But that doesn't mean assuming it's fine to apply the treatments in the absence of good reason and evidence.

There's no evidence that "psychiatric treatment" cures ME/CFS so far, so there's no reason to apply it to people with ME/CFS outside of trials. CBT has been done to death, we know it doesn't do much at all. If BPS proponents want to trial some other new "psychiatric treatment", that's fine, so long as they use good research methodology (something they have been largely incapable of so far) and don't hog all the research budget.

Until there's robust evidence that changing someone's thoughts, or giving them anti-depressants or some other thing that is a "psychiatric treatment" fixes ME/CFS or any other specific disease, then such treatments should not be applied to the disease outside of trials. It's not complicated; it doesn't require a philosopher. Do the trials, find something that works.
 
I am not claiming here that we are in a position to say that these conditions are psychiatric conditions, in poignant words, “whatever that means, though it is rarely something good”. Rather, it is true that we are not in a sufficiently strong epistemic position to rule out that psychiatric research and treatment can help improve the lives of patients. For that reason, we should remain open minded.
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'It is theoretically possible that we might not be completely wrong. More research is needed.'
 
Hutan said:
Sure, we can remain open-minded. But that doesn't mean assuming it's fine to apply the treatments in the absence of good reason and evidence.

There's no evidence that "psychiatric treatment" cures ME/CFS so far, so there's no reason to apply it to people with ME/CFS outside of trials. CBT has been done to death, we know it doesn't do much at all. If BPS proponents want to trial some other new "psychiatric treatment", that's fine, so long as they use good research methodology (something they have been largely incapable of so far) and don't hog all the research budget.

Until there's robust evidence that changing someone's thoughts, or giving them anti-depressants or some other thing that is a "psychiatric treatment" fixes ME/CFS or any other specific disease, then such treatments should not be applied to the disease outside of trials. It's not complicated; it doesn't require a philosopher. Do the trials, find something that works.
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Couldn't agree more - nailed it.
 
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