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ME/CFS Research Newcastle UK - Team Newton

Discussion in 'General ME/CFS News' started by Firestormm, Sep 26, 2013.

  1. Firestormm

    Firestormm Guest

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    I just wanted to start a thread where I can keep us all up to speed with the ongoing advocacy and research that is being performed by Professor Julia Newton and her team 'up' in Newcastle.

    You can of course follow developments - as I do - by 'liking' their Facebook page, here.

  2. Snow Leopard

    Snow Leopard Senior Member

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    Excellent. It really seems as if the difference between the teams that do quality research and those who do poor quality research is that those who do high quality research actually listen to what patients have to say.
    Ruthie24, rosie26, aimossy and 2 others like this.
  3. peggy-sue

    peggy-sue

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    It would be a miracle if AfME take information on board and change their views, but I'm clinging to hope.
    (for the moment. ;) )
    Min and aimossy like this.
  4. Marco

    Marco Old blackguard

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    Given that autonomic problems have been consistently reported in recent research and are associated with serious long term health consequences, autonomic testing and appropriate treatment is probably the best 'palliative' treatment you could provide for us while the condition remains 'complex'.

    Don't hold your breath;)
    rosie26, Legendrew and Valentijn like this.
  5. Firestormm

    Firestormm Guest

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    Snowdrop likes this.
  6. Firestormm

    Firestormm Guest

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    Website advertising a conference that Newcastle are attending made an error which was quickly rectified following Newcastle's prompt intervention:

    Doesn't it make you wish that others were as supportive? :)
    MeSci, PennyIA, rosie26 and 5 others like this.
  7. Firestormm

    Firestormm Guest

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    I'm not too sure what that event was all about. I had read some people's concerns about it. Would need to take a closer look...
    Esther12 likes this.
  8. peggy-sue

    peggy-sue

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    I just looked at the link provided.

    I assume this was my first glimpse of what a facebook page looks like.o_O

    I can't work out what's being said by who to whom - it's all tiny little disjointed bits and pieces.

    Sorry, but I'm staying away from fb.
  9. rosie26

    rosie26 Senior Member

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    You got me laughing PeggySue, everytime I head into my facebook I feel like exiting straight away. Like you said " so disjointed" I don't get it, !!! x
    aimossy likes this.
  10. Esther12

    Esther12 Senior Member

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  11. Shell

    Shell Senior Member

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    I hope not. We could do with having Julia Newton on side. She's done a lot for POTsies with NMH but I've had a sense she's so focused there that Dysauto of a different flavour passes her by.
    If she is looking at the autonomic aspects of ME that would be very good - IF she is allowed to do it without political interference.
  12. peggy-sue

    peggy-sue

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    Yesterday I got exposed to a facebook page for the first time and could not make any sense of it whatsoever.:rolleyes:

    Today, it would appear that I have seen twit stuff for the first time - and it is every bit as uninformative, disjointed, messed up and incomprehensible.:rolleyes:
  13. Firestormm

    Firestormm Guest

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    Hear hear!! You'd think it was easy designing new websites etc. for people with ME, wouldn't you? :D
    peggy-sue likes this.
  14. peggy-sue

    peggy-sue

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    I have noticed meaningless twitty messes on the MEA, yes.:mad:
    Firestormm likes this.
  15. Esther12

    Esther12 Senior Member

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    From that tweet, and the others I saw, Newton seemed 'on side', there were just aspects of the organisation that smelt a bit bad.
    Firestormm likes this.
  16. Firestormm

    Firestormm Guest

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  17. Esther12

    Esther12 Senior Member

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    Just saw this on-line from the conference:


    Probably worth having a couple of people saving copies of the videos.

    I was watching a few of the videos, thinking: 'If this is how they view patients, no wonder they think that they should assert authority over the psychosocial aspects of our lives", when my partner wandered past saying "Ha ha - they really do think that patients are morons, don't they?"

    The person acting as the patient is so irritating. I'd love to see equivalent videos from the 70s, with a mental health expert acting out a gay person, and the problems which perpetuate their dysfunctional sexual desires. It's not as if a diagnosis of CFS or ME or 'Persistent Physical Symptoms' requires good positive evidence of being unable to think reasonably about one's life, if it did, then this view of patients would be less repulsive.
    Last edited: Apr 29, 2014
    Cheshire, Min and Bob like this.
  18. Bob

    Bob

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    'Persistent Physical Symptoms'

    So is this to now replace 'functional somatic disorder', which replaced all the other names that describe symptoms originating in the mind?

    They seem to come up with a new name once a year now.
  19. Esther12

    Esther12 Senior Member

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    'How strange, the label that we give to those patients who we think deserve to be psychosocially managed without their informed consent, and despite them not suffering from identifiable cognitive distortions seems to have become stigmatised again. Most peculiar. I expect that we'll have better luck with the next one though - words are so important.'
  20. Bob

    Bob

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    Why does that phrase worry me so much?!?

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