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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James Coyne talk at Stormont in Belfast, Feb 9 - for professionals - tell your MLAs!

Discussion in 'General ME/CFS News' started by Sasha, Jan 5, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Wish I could go!



    Click on the link in the tweet and then look for the uploaded file:
     
    Yogi, snowathlete, Scarecrow and 10 others like this.
  2. daisybell

    daisybell Senior Member

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    I see this is an event for professionals... Let's hope they go! This is where the message needs to be heard.
     
  3. Sasha

    Sasha Fine, thank you

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    So it is! I hadn't noticed. Yes, let's hope they go!
     
  4. Stewart

    Stewart Senior Member

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    This is taking place in the Stormont Buildings, which is where the Northern Ireland Assembly meets. The more politicians who attend that meeting to hear James Coyne lay into PACE, the better. Anyone on this board who lives in Northern Ireland should contact all of their MLA's and urge them to attend this meeting (and get friends and family to do the same).
     
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  5. Sasha

    Sasha Fine, thank you

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    Thanks - I've put all that in the title.
     
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  6. Sidereal

    Sidereal Senior Member

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    Not far from me. I wish I could go.
     
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  7. Keela Too

    Keela Too Sally Burch

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    Last edited: Jan 19, 2016
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  8. Sasha

    Sasha Fine, thank you

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    That link has gone dead - do you know anything about that, @Keela Too? Is there a better link somewhere?
     
  9. Liz_999

    Liz_999

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    Does anybody know if this is being recorded? If it is and there is interest for it to be transcribed, I'd be happy to do it.
     
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  10. Keela Too

    Keela Too Sally Burch

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    Yes @Liz_999 the Irish ME Trust have sponsored the recording of the event at Stormont.

    Not sure about transcription, but I'm hoping there will be some live tweeting using tag #PACEni - if I make it I plan to tweet.
     
    Valentijn likes this.
  11. Keela Too

    Keela Too Sally Burch

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    Okay @Sasha - not sure why that link is dead. I'll look into ways of making the flyer public.... Hmmmm might need to set up an account somewhere to put it online.
     
    Sasha likes this.
  12. Liz_999

    Liz_999

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  13. Keela Too

    Keela Too Sally Burch

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    I "think" this should now take you to an online version of our flyer for the event!

    http://1drv.ms/1Ws5ijK

    Edit: Okay think the above link goes to a folder in which the file resides... this link I hope should go directly to the file: http://tiny.cc/k82a8x
     
    Last edited: Jan 19, 2016
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  14. Sasha

    Sasha Fine, thank you

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    Thanks - yes, that works!
     
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  15. Sasha

    Sasha Fine, thank you

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    Transcription might be a useful resource for those who don't take spoken info in very well, or are short on time (like MLAs!) and don't have time to attend the session or watch a video.

    When we transcribed (as a group!) James Coyne's Edinburgh talk, we used this brilliant online thing:

    http://otranscribe.com/

    Saved HOURS.
     
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  16. Keela Too

    Keela Too Sally Burch

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    Yes two events. One for professionals (as they tend not to go if they think an event is for patients) and one event for patients and other interested folk.
     
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  17. Keela Too

    Keela Too Sally Burch

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    I'm wondering though if perhaps better than a full transcription (which can make for a very long document) if a report of what was said might be better?

    I have some-one in mind already who hopes to report on the event. And I certainly hope to be taking notes if I get to one or both events.

    I agree @Sasha that transcribing tool was really useful. And certainly once the presentation goes on You Tube then a transcription would be possible, much like the last one was done. :)
     
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  18. Sasha

    Sasha Fine, thank you

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    I'd say they're not mutually exclusive. Coyne was very colourful in what he said in his Edinburgh talk and it was good to hear/read him coming out with very direct and frank things, which I think would get a bit muted in a report. But a report would be good for certain purposes. If you've got a volunteer for a transcript and another for a report, I'd take full advantage!
     
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  19. Keela Too

    Keela Too Sally Burch

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    And of course you are entirely right @Sasha :p

    I'd better start saving my spoons now!
     
    Sasha likes this.
  20. Sasha

    Sasha Fine, thank you

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    Yes, don't wear yourself out!
     
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