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

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Sly Saint, Mar 15, 2020.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    https://link.springer.com/article/10.1007/s11019-020-09945-4
     
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  2. Andy

    Andy Committee Member

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    I'll admit that my eyes glazed over after a while, as it was too word-y for me.
    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?!"
     
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  3. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Caesar and Invisible Woman like this.
  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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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.
     
  5. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    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 .
     
  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    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.
     
    Last edited: Mar 17, 2020
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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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.
     
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  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    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.
     
    Last edited: Jul 25, 2022
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  9. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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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.
     
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  10. chrisb

    chrisb Senior Member (Voting Rights)

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    Love the schematic representations of ill people (presumably). They are so apt and not at all stereotypical or stigmatising.

    "Stigma" seems to be becoming something of a cliche. It will soon be easy to diagnose ME. Just hold your hands up for inspection.
     
  11. Hutan

    Hutan Moderator Staff Member

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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.
     
  12. Sean

    Sean Senior Member (Voting Rights)

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    'It is theoretically possible that we might not be completely wrong. More research is needed.'
     

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