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ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Sep 27, 2017.

  1. Tilney

    Tilney

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    Is it still a FND if in a blind trial pill A stops the symptoms & pill B doesn't ?
     
  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    It could be if the pill affects the brain that then reduces emotions that then reduces the neurological symptoms.

    It strikes me that all this psychiatric/ psychological stuff is confused because people are muddling up two different directions.

    1. Illness affects thinking.

    That is what ME is about. And it happens in rheumatoid arthritis and multiple sclerosis and you name it. It is what a lot of psychiatry is about too, but psychiatry specifically deals with thinking that has become irrational.

    2. Thinking affects illness.

    That is what people call 'psychological' and is actually quite different from 'psychiatric'. Nobody thinks psychiatric diseases are 'psychological' any more than any other disease.

    And in 'BPS' nobody actually knows which psycho they are talking about.
     
    AndyPR, Valentijn, daisybell and 5 others like this.
  3. TiredSam

    TiredSam The wise nematode hibernates

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    Lately the psycho they've been talking about is Esther Crawley. Before that it was Wessely.
     
  4. Countrygirl

    Countrygirl Senior Member

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    10 500!!
     
    AndyPR, Valentijn, Sean and 11 others like this.
  5. Countrygirl

    Countrygirl Senior Member

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  6. Countrygirl

    Countrygirl Senior Member

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    11 500!!
     
    Joh, Invisible Woman, MeSci and 4 others like this.
  7. Countrygirl

    Countrygirl Senior Member

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  8. Countrygirl

    Countrygirl Senior Member

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    I see that the votes are markedly reducing in speed and we will be hard pressed to reach 15 000 without a little advertising.

    Could we please contact second cousins, great grandparents, great nephews whomever, and ask them if they will support the MEA petition please?

    Let's at least hit 15 000.

    20 000 of course would be better. :hug:
     
    Joh, Skycloud, AndyPR and 2 others like this.
  9. Yogi

    Yogi Senior Member

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    Why did the last NICE petition close? I understand it is good to have a deadline. Is it not best to keep it open so it can still gather signatures.

    Why is this petition going to close on Wednesday. Hopefully the MEA can answer this.

    Also I recall that some petitions you could sign anonymously by ticking a box so your name is not displayed and searchable on the net. This petition does not have that option?
     
  10. AndyPR

    AndyPR Senior Member

    I asked the same question on the last petition the MEA ran, from memory the explanation given was that a deadline would encourage people to sign it and ending it would give them an opportunity to present the total to NICE. Neither answer I really understand, as you say, leaving it open would allow it to attract further signatures, and it easy enough to just take a screenshot at any particular time, to capture the total at that point.

    Having already signed this, I can't check about anonymous signing but I think the option you mention was available to me when I signed it.
     
    Invisible Woman likes this.
  11. Countrygirl

    Countrygirl Senior Member

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    12 500!!
     
    Joh, Jan, Sean and 6 others like this.
  12. Countrygirl

    Countrygirl Senior Member

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    If we are to achieve 15 000 before the poll closes, we need to pull out the stops.

    Can we make another 'push' folks?
     
  13. NelliePledge

    NelliePledge plodder

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    Just hit 13000 33 hours til the petition closes
     
    Joh, MeSci, Sean and 4 others like this.
  14. Countrygirl

    Countrygirl Senior Member

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    The petition closes at 13, 593!!


    https://www.change.org/p/sir-andrew...4083201&l=32_HTML&u=29752558&mid=7259882&jb=2


     
  15. Creachur

    Creachur

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    As I recall, Jon Stone and his colleagues at Edinburgh are leading lights in advancing the cause of Functional Neurological Disorders in the UK. I would not be at all surprised to learn that Jon Stone et al are behind the push for NICE to issue guidelines although I haven't seen the list of committee members on this particular project.

    The definition of Functional Neurological Disorder is broader than "emotionally driven" symptoms (as I saw described earlier in this thread). It includes symptoms such as non-epileptic seizures which is actually said to improve with Cognitive Behavioural Therapy. There used to be a video on YouTube of a FND epileptic attack and it looks dramatic. That web site you link used to contain examples of various conditions and was, a few years ago, considered to be a significant resource.

    However extending FND to CFS/ME seems a stretch too far. There may (just) be some elements of FND is some of the myriad symptoms of CFS/ME but to say CFS/ME is largely a FND appears to be really overstating any connection.
     

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