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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$4,600 Up for Grabs for UK ME/CFS Charities – Vote Once from Anywhere!

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 7, 2013.

  1. Sasha

    Sasha Fine, thank you

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    I think Reuben's Retreat got more than 50 but the rest are almost going backwards. This is a very weird contest.
     
  2. Sasha

    Sasha Fine, thank you

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    Bump! Eyeballs like sandpaper this morning so I'm not going to look at screen long enough to transfer the numbers but basically, our numbers are up a bit, MERUK has maintained 4th place and there's a bunfight, albeit among snails, to stay in the top ten to guarantee a £250 prize.

    A lot of people are on holiday, methinks. Let's take advantage!

    Voted yet? Told your friends? :)
     
    Bob and snowathlete like this.
  3. Sasha

    Sasha Fine, thank you

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    There's a charity in the top ten now that supports squirrels.

    Vote for our ME charities, my friends, and tell everyone you know! :nerd:
     
    snowathlete and Valentijn like this.
  4. Valentijn

    Valentijn Activity Level: 3

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    We know what to do with squirrels ... :cat:
     
  5. Esther12

    Esther12 Senior Member

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    Thanks for publicising.
     
    Sasha and Dolphin like this.
  6. Sasha

    Sasha Fine, thank you

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    You're welcome!

    Thanks for doing a signature! :)
     
    Esther12 likes this.
  7. Dolphin

    Dolphin Senior Member

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    One can't post on the MERUK page.
    Dr. Charles Shepherd posted on the MEA page.

    I think posting the link and perhaps a few lines will suffice for most situations e.g. on Facebook.
     
    Bob and snowathlete like this.
  8. snowathlete

    snowathlete

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    We
    ll worth people posting on me cfs Facebook pages. It's a lot of work for one or two people but light work if everyone posts just once or twice somewhere.
     
    Firestormm, Sasha, Bob and 1 other person like this.
  9. Dolphin

    Dolphin Senior Member

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    Also good if people like it if they see it anywhere (or of course RT on Twitter).
     
  10. Firestormm

    Firestormm Guest

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    4th MERUK and 9th MEA this morrow. 20 days remaining... I think both organisations could probably do with more resources being invested in social media - but in the meantime: spread the word. The competition is strong.
     
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  11. Tom Kindlon

    Tom Kindlon Senior Member

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    I plugged the article and vote in lots of places yesterday. Unfortunately they haven't got the bounce in votes I had hoped for (the MEA has dropped one to 10th now, with MERUK unchanged at 4th).
     
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  12. Firestormm

    Firestormm Guest

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    Article here with Neil from ME Research UK. I posted in full on News section, but it might help to raise their profile if it's reposted around the place.

    I'm not very proficient on the olde social networks outside of Facebook I'm afraid. There will be lessons to learn from this effort I think - for the charities I mean.

    Might serve as a bit of a wake-up call. I know they can't resource everything they might like to - research and support have to come first - but there's a case to be made for this kind of thing...

    Ok. I've run out of steam. Later :)
     
  13. Sasha

    Sasha Fine, thank you

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    Well done, Tom!
     
    Tom Kindlon likes this.
  14. Tom Kindlon

    Tom Kindlon Senior Member

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    Thanks.
    The MEA actually have the biggest Twitter following (3801 currently) in the world I think of ME/CFS groups so not doing so badly there.
     
    Firestormm likes this.
  15. Sasha

    Sasha Fine, thank you

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    Have they tweeted it? If all of their Twitter followers voted, that would be them straight into first place and they'd probably stay there - last month's winning vote was 3,590.
     
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  16. Tom Kindlon

    Tom Kindlon Senior Member

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    They tweeted or retweeted a few messages. They've just retweeted my message saying I was disappointed that there weren't more votes after I highlighted it in lots of places yesterday. :)
     
    Bob and Firestormm like this.
  17. Sasha

    Sasha Fine, thank you

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    You're on Twitter? Would you like to tweet them my point about the numbers - that if just their Twitter followers voted for them, they'd win?
     
  18. Tom Kindlon

    Tom Kindlon Senior Member

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    Yes, have been active for the last couple of years: https://twitter.com/TomKindlon
    Ok. Done.
     
  19. Sasha

    Sasha Fine, thank you

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    Thanks!

    Nice hat, by the way!
     
  20. Sasha

    Sasha Fine, thank you

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    MEA currently 10th place with 380 votes, by the way - let's see if they go up.

    I see MERUK has 34 Twitter followers. :(

    Still, if they all tweet it on - isn't that how social media work? :cool:
     
    Bob likes this.

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