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Epistemic Injustice and the Ethics of Healthcare Encounters: Evidence From Chronic Fatigue Syndrome

Discussion in 'Upcoming ME/CFS Events' started by Yogi, Nov 4, 2016.

  1. Yogi

    Yogi Senior Member

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    http://nief.org.uk/events/epistemic-injustice-and-the-ethics-of-healthcare-encounters/

    Epistemic Injustice and the Ethics of Healthcare Encounters:
    Evidence From Chronic Fatigue Syndrome.
    Speaker: Dr Charlotte Blease, UCD.

    1800 Wednesday the 14th of December 2016.

    JD Seminar Room 2. The School of Law, QUB (MST/02/003).

    Free to Attend. All Welcome.
    As space is limited, registration is encouraged. Please email us at: contact@nief.org.uk

    Click here to download a Flyer for this event [.pdf]

    In her ground breaking ‘Epistemic Injustice’ the philosopher Miranda Fricker argues that ‘knowing’ has an ethical dimension. Not only is knowledge – rather than mere information – more accessible to some rather than others, the contributions individuals make to knowledge-formation activities also varies. This is not just a function of what individuals ‘know’; knowledge-formation is also influenced by social and cultural factors including individuals’ social status. Given that some aspects of the interactions between doctors and patients can be considered as involving knowledge-formation practices – e.g. diagnosis – and the fact that such encounters have an inherent power differential, there is significant potential for healthcare to be unjust from an epistemic point of view. This is particularly pertinent to the case of Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (hereafter, CFS/ME).

    While there is consensus within mainstream medical guidelines that there is no known cause of CFS/ME, there is continued debate among clinical researchers, doctors, patients and patient interest groups about how CFS/ME ought to be understood. This includes disagreement about how to interpret clinical studies which look at treatments for the condition. Against this background, robust qualitative and quantitative research from a range of countries has found that many doctors (and medical students) display uncertainty about whether or not CFS/ME is real. Such attitudes are important as they may delay the diagnosis and treatment of patients. Qualitative research also provides evidence that patients with CFS/ME often experience suspicion by health professionals, and many patients oppose psychological conceptions of their illness and treatments based on such accounts.

    In view of the consensus that the causes of CFS/ME are not understood, and in light of the extensive qualitative studies on attitudes to CFS/ME, I find evidence that healthcare consultations are fora where patients with CFS/ME may be vulnerable to epistemic injustice. I argue that the (often unintentional) marginalization of many CFS/ME patients represents a failure in medical professionalism, one that may lead to further ethical and practical consequences both for progressive research into CFS/ME and for ethical care, including the delivery of existing treatments among individuals suffering from this debilitating illness.



    http://nief.org.uk/wp-content/uploa...thics-of-Healthcare-Encounters-NIEF-Flyer.pdf


    http://www.charlotteblease.com/
     
  2. Denise

    Denise Senior Member

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    Is anyone from PR attending? Could we get a write up of this?
     
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  3. Yogi

    Yogi Senior Member

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    I will tag @Keela Too who is involved in Northern Ireland advocacy and based there. It is a fantastic talk and about time someone talked about the ethics and legal implications of the ME controversy.

    Would be great to have a video of it as well.
     
    Jennifer J, MeSci, taniaaust1 and 5 others like this.
  4. Keela Too

    Keela Too Sally Burch

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    Thanks.. Yup going to this, and we are circulating the details.
    Will see about possibility of video.
    Might even try and tweet :p
     
  5. Yogi

    Yogi Senior Member

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    Thank you !!!! Your amazing!!!:)
     
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  6. alex3619

    alex3619 Senior Member

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    I am very interested in this. I have ideas along similar lines, though with a more general perspective, and keep wanting to blog them but my brain keeps running out of steam.
     
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  7. medfeb

    medfeb Senior Member

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    @Keela Too - Glad to hear you are going. I'm also very interested in this, particularly if its concrete enough to use as the basis of action. Looking forward to what you hear.
     
    Jennifer J, mango and Keela Too like this.
  8. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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  9. taniaaust1

    taniaaust1

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    Thanks, this certainly should be videod, it would be a huge missed opportunity if it isnt.
     
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  10. Keela Too

    Keela Too Sally Burch

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    Dr Charlotte Blease is speaking tonight in Belfast. I am hoping to tweet from the event. @keelatoo
     
    sarah darwins, Kati, AndyPR and 2 others like this.
  11. Keela Too

    Keela Too Sally Burch

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    See above
     
  12. Keela Too

    Keela Too Sally Burch

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  13. Keela Too

    Keela Too Sally Burch

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    Brilliant talk by Dr Blease. I used tag #ethicsME. Hope I did talk justice. It has been videoed too.
     
    medfeb, -Jessie-, Jennifer J and 7 others like this.
  14. Kati

    Kati Patient in training

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    Hi @Keela Too thank you for reporting. You mentioned that the venue was full. Could you please tell me if the audience was mostly patients, family and caregivers or was there also medical presence? Thank you.
     
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  15. Keela Too

    Keela Too Sally Burch

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    Yes medical presence there. Many patients and carers. Some academic interest I think too.
     
    Jennifer J, trishrhymes, Sean and 4 others like this.
  16. taniaaust1

    taniaaust1

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    So glad to hear it was taped and thanks for sharing Keela.
    .............

    Im feeling miserable right now as Im at risk of loosing the new home support agency as apparently my medial conditions are "too difficult" so the support agency has told me today that they dont know if they can continue to give me any services.
     
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  17. Keela Too

    Keela Too Sally Burch

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    @taniaaust1 I am so sorry to hear this. Many stories came out last night. So many get treated shoddily. I hope something can be fairly worked out for you xx
     
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  18. CCC

    CCC Senior Member

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    I'm not sure that's legal in Australia?

    If you think you have nothing to lose, ask them.
     
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  19. taniaaust1

    taniaaust1

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    Its not legal at all what is being done to me by various people, hence why I currently got a legal case against our state disability service for discrimination and neglect. They wont include my MCS and my ME/CFS on the care support plan they have for me so anything done around that is being done on an unoffical bases and its left purely up to me to try to get through to those who are trying to work with me.
     
  20. medfeb

    medfeb Senior Member

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    Thank you for the tweets, @Keela Too. Very helpful. Looking forward to the video
     
    actup and Comet like this.

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