A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Queen's University ePatient Conference - My presentation

Discussion in 'General ME/CFS Discussion' started by Keela Too, Sep 13, 2015.

  1. Keela Too

    Keela Too Sally Burch

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    Yesterday a video of the audio PowerPoint that I've been working on over the summer was shown at the QUB ePatient Conference in Belfast.



    It was well received & there was some surprise that the ME situation has remained unchanged for so long.

    Links to the material I used in the presentation are on my blog:
    The Use of Patient Blogs as a Care Resource

    I am happy for folk to share this video as they see appropriate. Eventually if lots of us do our own wee bit making waves where we can, perhaps we'll create the storm we need for real change... xx
     
    Chezboo, merylg, Scarecrow and 18 others like this.
  2. Effi

    Effi Senior Member

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    I really like your presentation, @Keela Too ! You have a very soothing voice, it was nice to listen to, and the information was very well presented. It's such an interesting topic. The fact that patients now can find actually useful medical help/support online is something that can't be denied anymore. It's a whole new world. Especially for patients with ME and other misunderstood illnesses.

    I always feel very grateful to people making an effort to get our message heard. I agree that every little action counts! Thanks Keela. :star::trophy::bouquet:
     
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  3. Bob

    Bob

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    Sally, that's an amazing presentation. The arguments are intelligently and beautifully articulated. And it's very interesting. And I learned some stuff. Thank you :)

    I will share on Twitter.
     
    Last edited: Sep 13, 2015
    mango, alkt, Effi and 3 others like this.
  4. JaimeS

    JaimeS Senior Member

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    A very classical / common story of ME, well-told, excellently articulated. I love the perspective of a science education and background and its influence on what we are willing to 'take on board' in terms of advice. I can't imagine where I would be if I hadn't found PR. The impact of the (ironically!) tireless efforts of a cohort of bright, educated, determined people to help educate other another cannot be overstated.

    -J
     
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  5. Keela Too

    Keela Too Sally Burch

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    Thank you all for your kind comments.
    I would have included PR too, but I actually didn't find it until over a year after my illness onset.
    I've had some lovely messages since from folk who are still ill after their GET experiences ...
    Quite sobering.
     
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  6. ahmo

    ahmo Senior Member

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  7. Keela Too

    Keela Too Sally Burch

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    Never Give Up, Bob and Effi like this.
  8. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I see that post is in his popular posts list. :thumbsup:
     
    Keela Too likes this.
  9. TiredSam

    TiredSam The wise nematode hibernates

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    Just brilliant.
     
    Keela Too likes this.
  10. Keela Too

    Keela Too Sally Burch

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    Oh really! That's just made my morning! xx
     
  11. Keela Too

    Keela Too Sally Burch

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    Little update:
    Blog post with embedded video has had 1000+ page views
    YouTube is registering 600+ views of the video

    I'm not entirely sure that views of the video from within the blog (or other embedded places) are being added to the count... either way, I'm well pleased with how much it has traveled.

    Thank you every-one for the encouragement. :)
     

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