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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Livestreaming of Action for ME AGM and conference on Friday, 18 Nov 2016

Discussion in 'Upcoming ME/CFS Events' started by Sasha, Nov 15, 2016.

  1. Wildcat

    Wildcat

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    Questions about PACE will not be answered.
    .
     
    simeyss likes this.
  2. Wildcat

    Wildcat

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    And AFME won't answer hard questions such as why have they not lobbied for the use of the CCC or ICC as diagnostic and research critieria in the UK, and as official AFME policy.


    AFME is really still a fatigue charity which focuses on illness management, and pacifying the patients, whilst appeasing the status quo of the UK policy.

    .
     
    simeyss, Solstice, Jan and 2 others like this.
  3. Sasha

    Sasha Fine, thank you

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    Belatedly found AfME's Twitter feed:

    https://twitter.com/actionforme

    Confirms the UN thing:

     
    simeyss likes this.
  4. Sasha

    Sasha Fine, thank you

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    Is it just me or are they still off air?
     
  5. Valentijn

    Valentijn Senior Member

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    It said they'll be back at 3pm I think. 45 minutes left?
     
    Sasha likes this.
  6. Sasha

    Sasha Fine, thank you

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    Oh! Where did it say that? The agenda had the next thing on at 2 pm.
     
  7. Cinders66

    Cinders66 Senior Member

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  8. Valentijn

    Valentijn Senior Member

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    The person running the "chat" left a comment saying it. Not sure what the point of the chat is though, since patients can't have their comments or questions passed on to the speakers.
     
    Dx Revision Watch and Sasha like this.
  9. Sasha

    Sasha Fine, thank you

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    Still off air?
     
  10. Valentijn

    Valentijn Senior Member

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    Yeah :meh:
     
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  11. Sasha

    Sasha Fine, thank you

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    They're back, but now it's the AGM. :(
     
  12. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    • Action4ME 3:31 PM Hello and welcome back to the Action for M.E. livestream. In order to keep on schedule we will not be passing questons from lovestream chat on to the panel of speakers and will only be taking questions from people in the room. If you have a question that needs answering you can contact our Information and Support Officers by emailing admin@<censored> or our CEO Sonya Chowdhury by emailing sonya@<censored> Thank you.
    • Action4ME 3:32 PM *livestream, woops what a typo that was.
     
    Wildcat and soofke like this.
  13. Valentijn

    Valentijn Senior Member

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    Censored email addresses are by far the most helpful :rolleyes:
     
    simeyss, Solstice, Webdog and 6 others like this.
  14. Valentijn

    Valentijn Senior Member

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    Okay, that was 15 minutes of AfME telling us how awesome they are, interspersed with generic power point drivel.
     
    simeyss, Solstice, soofke and 3 others like this.
  15. Cinders66

    Cinders66 Senior Member

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    So Gina Rutherford left the fiekd as couldn't sustain funding but AFME had a £200k surplus and MRC are keen to invest in ME, I don't understand this
     
    simeyss, Solstice, AndyPR and 3 others like this.
  16. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Nowt wrong with a nice inspirational pebble pile

    [​IMG]

    ...and not one question from the floor.
     
  17. Sasha

    Sasha Fine, thank you

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    Guess that's over.
     
    Valentijn likes this.
  18. Wildcat

    Wildcat

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    I think that the ephemeral non existent but important sounding International Alliance - exemplifies Sonia Chowdhury's style and actions ..... big talk, stylish, impressive sounding hot air .....
    .
     
    simeyss, Solstice, Jan and 4 others like this.
  19. BurnA

    BurnA Senior Member

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    I am worried that AfME are spreading their wings trying to garner international / UN clout when they can't even get the basics right.

    This could be disastrous, it's bad enough them having a say in the UK, we dont want them influencing things abroad too.
     
    simeyss, Chezboo, MEMum and 13 others like this.
  20. Molly98

    Molly98 Senior Member

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    Quite agree, what it will mean is Crawley and co, via SC and AFME having even more influence internationally.
    Can we have someone from IiME be sent to the UN to represent us?
     
    simeyss, MEMum, Solstice and 5 others like this.

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