International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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The Failure of Clinical Guidance for People with ME

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Janet Dafoe (Rose49), Feb 6, 2018.

  1. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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  2. Countrygirl

    Countrygirl Senior Member

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    Thank you @Janet Dafoe (Rose49) I will pass this on to the two Mums who are being threatened with having their children forced into an inpatient unit for a course of vigorous exercise therapy in order to rid them of their 'faulty illness beliefs'.
     
  3. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Great! I sure hope it helps!
     
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  4. Countrygirl

    Countrygirl Senior Member

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    Thank you!

    The doctor and psychologist who has been brought in insist ME is a conversion disorder as there are, in their opinon, no any physical abnormalities in the illness, so they may be very resistent to the contents of the document. All we can do is send it and hope it doesn't get filed in the bin.
     
  5. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Can't they include things like the IOM report and Naviaux paper?and cytokines paper?
     
  6. Countrygirl

    Countrygirl Senior Member

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    I have sent Mum a variety of relevant research, but the doctor dismisses it, sadly. Also they are not interested in research that is not conducted in the UK. Meanwhile the legal profession rules that ME is a conversion disorder and the fault of the mother.

    I tried to share Prof Davies work as well as Naviaux's and others with my own GP who had just been contacted by one of the PACE authors, but, although the doctor knows nothing about the illness, she dismissed all the research without reading it with the comment that she didn't believe it and it was just 'my opinon'.that it was worthy of her attention.

    The majority of UK medics remain paid-up members of the Ftat Earth Society, unfortunately, and they don't want their opinions challenged.
     
    Last edited: Feb 6, 2018
  7. SueJohnPat

    SueJohnPat Sue

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    What will it take to get rid of cbt and get,..? Beyond frustrating. Thank you all for fighting .
     
  8. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    This is so barbaric and Neanderthal, but then again I don't want to insult barbarians or Neanderthals. It's hard to believe that this is going on in England. Don't they use US research in any other disease treatment? What the h*** is wrong with them?! It's beyond the pale! No words are bad enough to describe it. I'm sitting here searching my brain for some, but there just aren't any. Bleh
     
  9. Countrygirl

    Countrygirl Senior Member

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    Thanks for making me smile @Janet Dafoe (Rose49) . Not sure either if it is fair to the barbarians and poor Neamderthals either.

    When Prof Davis has cracked this for us all may be borrow the pair of you to conduct a lecture tour of the UK 's medical centres to inform the doctors that ME actually does exist, please? You will find them a tough nut to crack as prejudice against ME runs deep.

    Please pencil it in your diaries. Thanks. :thumbsup::balloons:
     
    Last edited: Feb 7, 2018
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  10. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    We would LOVE to do that! I wish I could come over and do it now. It all makes me SO MAD. But I'm probably overestimating my ability to change their minds. I can get pretty intense, and I would bring lots of data and photos, but on the other hand, they seem pretty impervious and I'm sure others over there have tried really hard already. I'd come right now, but I'm kind of scared to go that far away from Whitney. Plus, I'd LOVE to visit @benH and Molly and everybody over there! Some day....
     
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  11. Countrygirl

    Countrygirl Senior Member

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    That's a date then @Janet Dafoe (Rose49) :)

    How about next week?:p

    We so need someone to tour the UK kicking butt.

    You would need a letter of confirmed sanity though............as those they disagree with are apt to be whisked away by the ittle men in white coats.

    I have a bed ready for you upstairs and Molly and I will treat to a good welcome meal. Look forward to it. :hug:
     
  12. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    aren't all those Unrest screenings over there making a difference?
     
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  13. Countrygirl

    Countrygirl Senior Member

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    Not yet @Janet Dafoe (Rose49) . It will take a while as most doctors don't know about it and probably wouldn't want to see it as they have their minds made up. We may win one at a time though. Each surgery and hospital needs a copy and a showing. Maybe that is a project for us all to consider.

    One doctor described it as a horrible film for enouraging the well to thiink themselves sick. :(
     
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  14. TreePerson

    TreePerson Senior Member

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    I sent mine a copy with covering letter, I haven’t heard anything back.

    In my GPs practice there are about eight doctors. My experience, over 25 years, has been that at any one time there will be one out of the eight who is open-minded and doesn’t behave as if they are humouring me as a deranged person.

    @Countrygirl Which doctor said that??
     
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