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Presentatie Prof. Julia Newton.mov

Discussion in 'Information and Resources' started by Sherlock, Aug 19, 2012.

  1. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Just in case this hasn't been posted here already, posted there May 2012


    33 minutes

    [edit: the still that youtube puts on the face of it gives the impression that it's mainly about XMRV, which it is not]
     
  2. Esther12

    Esther12 Senior Member

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    Thanks Sherlock.

    I don't have GI problems... which makes her suspect that I might not have CFS. Fingers crossed!

    I was surprised by how critical she was of the 'psychiatric' approach to CFS. If I had someone like her leading my local CFS centre, that would be an amazing relief. Even if I don't think I agree with all she says, she seems to think that patients deserve to be treated with respect.
     
    justy likes this.
  3. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    I'd thought the same thing, Esther, about not qualifying. It's a club I don't really want to belong to :)

    But still, I did have GI problems before. I think they mainly stopped when I took MSM for joints, and surprise surprise! It seemingly eviscerated my candida.
     
  4. Sasha

    Sasha Fine, thank you

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    Thanks for posting this, Sherlock - very interesting indeed.

    Also a bit surprised about her statement that she thinks that if you don't have GI symptoms you probably don't have ME since pretty much 100% of her patients do - I am ICC and CCC ME with acute post-viral onset and have never had GI symptoms in 25 years of illness.

    Good to hear someone so passionate about how we're being treated and how NICE determines how the NHS is forced to treat us with CBT, GET, etc.

    Well worth a listen, especially for UK people.
     
  5. Firestormm

    Firestormm Guest

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    Danke. Me likey :)
     
  6. Firestormm

    Firestormm Guest

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    Did anyone else notice that at the end of the presentation as she is running out of time, she shows a slide titled: How does CFS/ME affect patients? It's at 30.46.

    This was just mentioned on Facebook and is rather distressing to have seen I think. Look at the last point on that slide:

    • Bed-bound = disaster!
      • often due to complicity of family, secondary gain
    It seems to be continue, though I'm not certain. My reply on Facebook was:

     
    justy likes this.
  7. Sasha

    Sasha Fine, thank you

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    I also listened without watching (too tired to watch!) and didn't see that slide either. She had said earlier, very forcefully, that it was ridiculous for anyone to think that patients had anything to gain by having to live the kind of horribly restricted lives they were forced to live with loss of jobs etc. so I'm really surprised to hear about that slide.
     
  8. justy

    justy Senior Member

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    I noitced that slide at the end and felt that the usual 'psychological' approach permeated the whole talk - mainly around the edges. Yes everything she said SOUNDED good, but there was the odd thing like the bedbound= disaster slide that brought the whole talk down in my opinion.
    Yes it was good - but only within a wider context of denial and abuse of PWME in the UK.

    All the best, Justy
     
    Adamskitutu likes this.

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