Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Why I turned down an all-expenses-paid trip to the 2011 Sydney Writer’s Festival

Discussion in 'General ME/CFS News' started by Bob, Dec 12, 2014.

  1. Bob

    Bob

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    This is a great blog about living with ME. It's written by Mischa Hiller, who has ME, and who wrote the (award winning) novel Sabra Zoo.


    Why I turned down an all-expenses-paid trip to the 2011 Sydney Writer’s Festival
    Mischa Hiller
    Dec 8th 2015
    https://medium.com/@mischahi/why-i-...the-2011-sydney-writers-festival-48186343a6a4

    Read the rest here:
    https://medium.com/@mischahi/why-i-...the-2011-sydney-writers-festival-48186343a6a4


    This article was written in 2011, but I think it hasn't been published until now. The author has just promoted it in a Tweet.

    It includes: a description of the illness; a helpful discussion re the nature of ME vs 'fatigue'; a short discussion of the PACE Trial; and a discussion of various ME criteria. It covers quite a range of important issues, yet it's succinct.
    .
     
    Last edited: Dec 12, 2014
  2. snowathlete

    snowathlete

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    It must really suck to be in that position. But I totally get it. My brother got married 100 miles away two weeks ago and I couldn't go. Doesn't matter how much you want to travel for something, the disease just makes it impossible.
     
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  3. barbc56

    barbc56 Senior Member

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    Bless her. All that hard work and creative endeavor and not to be able to see the recognition she deserves. I hope she can hold on to the thought that she has created something others admire but I'm sure it's not quite the same.

    Barb
     
    Last edited: Dec 12, 2014
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  4. taniaaust1

    taniaaust1 Senior Member

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    Is that link working?, my computer isnt getting it up
     
  5. Bob

    Bob

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    The link's working ok for me Tania.
     
  6. alex3619

    alex3619 Senior Member

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    I was contacted privately about two really great jobs with large multinationals, in the mid 1990s, when I was working on my PhD candidacy. I had to decline both. Its not a great feeling.
     
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  7. barbc56

    barbc56 Senior Member

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    @snowathlete

    I also missed my younger daughter's wedding. We did Skype it, but it's not quite the same. But better than nothing and felt just as proud.

    I've been thinking about starting a thread brainstorming creative ways to handle these situations when we can't be there. My daughter was the one who thought about skyping.

    Barb
     
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