Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Forward ME Group: Meeting on Tuesday July 11th at the House of Lords

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Jul 11, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    Forward ME Group: Meeting on Tuesday July 11th at the House of Lords

    The main item on our agenda this afternoon is a presentation and discussion with Dr Diane O'Leary, from the Kennedy Institute of Ethics, Georgetown University, Washington DC

    We will also be discussing the NICE guideline review, the future of the APPG on ME at Westminster, and follow up to our recent meetings with the Royal College of General Practitioners and Mrs Isabelle Trowler, Chief Social Worker for Children and Families in England

    Forward ME Group Minutes archive: http://www.forward-me.org.uk/Minutes.htm

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  2. Barry53

    Barry53 Senior Member

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  3. trishrhymes

    trishrhymes Senior Member

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    I've just watched a talk Dr O'Leary gave to the US EDS society about the ethics of MUS diagnosis and the huge problem of doctors assuming anything the can't diagnose is 'all in your head'. I think it's a really good talk, spelling out the ethical issues of the whole MUS psychogenic approach including comments about CFS.
    https://www.youtube.com/watch?time_continue=3912&v=I6ipU7RrQQc

    Edit to add. I've also found some articles she's written or which refer to her work.

    http://www.huffingtonpost.com/allen-frances/diagnostic-ethics-harms-v_b_4450653.html

    http://www.bmj.com/content/346/bmj.f1580/rr/638352

    http://www.huffingtonpost.com/allen-frances/hippocratic-humility_b_3233740.html

    Correction - I initially thought she had written these articles. The first and third are by Allen Frances and refer to her work, the second is a response by O'Leary to a BMJ article by Frances.
     
    Last edited: Jul 12, 2017
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  4. charles shepherd

    charles shepherd Senior Member

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    We don't normally applaud speakers at these House of Lords FMG meetings but Dr Diane O'Leary got a well deserved round of applause for her excellent presentation on her area of great expertise - medical ethics relating to people who have a range of health conditions with uncertain causation where the medical profession takes the position that they must be caused by and treated as mental health problems, or as some form of psychogenic stress

    The information and advice on medical ethics in relation to the situation faced by people with ME/CFS here in the UK that she provided is going to be of great help in relation to the preparation of responses by charity stakeholders to the NICE guideline consultation process that is currently taking place

    The minutes for this FMG meeting are being prepared and will contained a fairly detailed account of the presentation, questions and discussion that took place yesterday

    I think that advocates in the US should also find it productive to make use of Dr O'Leary's great expertise in this much neglected area of ME/CFS advocacy

    CS
     
  5. A.B.

    A.B. Senior Member

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    She might be exactly the kind of person we need, and the kind of voice that needs to be empowered to contrast the push to classify every health problem that isn't understood as mental health problem. @charles shepherd any chance for a JHP commentary from her?
     
    Last edited: Jul 12, 2017
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  6. Daisymay

    Daisymay Senior Member

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    That's an excellent idea A.B.!
     
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  7. charles shepherd

    charles shepherd Senior Member

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    We didn't discuss the JHP commentaries yesterday but I'm sure she is aware of them

    I will ask her!

    CS
     
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  8. NelliePledge

    NelliePledge plodder

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    @charles shepherd any chance you could get her to do a session at the CMRC conference
     
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  9. slysaint

    slysaint Senior Member

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    Yes and invite Dr Speight and David Tuller as well (I'd pay to 'see' that).:D
     
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  10. aimossy

    aimossy Senior Member

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    It is a big releif to me to see that the ethics angle may start being utilised. Its a key issue area that has needed to be focused on. I think it is one of our most important angles for advocacy. So happy to see this!!
     
  11. charles shepherd

    charles shepherd Senior Member

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    As the Agenda for the meeting in September has already been agreed and sorted I suspect the answer is no!

    CS
     

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