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Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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MEandYou and All of Us: 90 Days of Stunning Achievement and a Look to the Future

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 12, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
     
    biophile, Simon, justy and 9 others like this.
  2. Sasha

    Sasha Fine, thank you

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    Maria is travelling to Haukeland this evening to give Drs Fluge and Mella the latest wheelbarrow of cash! Here's her latest message on Facebook:

    I’m off to Haukeland with
    53! ME-patients financed for research on Haukeland Hospital to seek for treatment and mechanisms.

    The scientist at Haukeland need more money then they were able to apply for and got. Most of the 10-millions are going to pay for medicins and they appreciate very much funding through MEandYou. Keep donating if you can! I´m transferring the money directly.

    Use http://www.meyou.no/donate-doner/

    Donate. Like. Share. Invite friends. Lets do it together.
     
  3. Firestormm

    Firestormm Guest

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    Thanks Sasha. Nice bit of background. Things I hadn't heard about before. Great :)
     
    snowathlete likes this.
  4. Sasha

    Sasha Fine, thank you

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    Thanks - loads of interesting stuff in her own 'Inventory' article that I list at the end, which is where I got the Tyr video, if memory serves. He's great, that guy!

    Hope we're all signing Maria's thank-you card: http://www.groupcard.com/c/zMGag9wWEjE
     
    snowathlete likes this.
  5. serendipitycat

    serendipitycat

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    We are all very, very grateful for Maria's dedication to this cause. If someone could pull this off, it was she.
    In terms of money, the results is fantastic. In terms of positive and constructive press coverage, even more so. Maria has gathered the support of politicians, academics, health authorities, business leaders all over the country and beyond. The image of ME-patients and the knowledge spread through this campaign is impossible to put a price on.
     
  6. Purple

    Purple Bundle of purpliness

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    I can only press the 'Like' button once but I think this is an exceptionally important point. Like x 1000!

    :thumbsup: :thumbsup: :thumbsup: :thumbsup: :thumbsup:
     
    Maria Gjerpe and snowathlete like this.
  7. Sasha

    Sasha Fine, thank you

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    I second that! Sometimes that 'Like' button doesn't cut it! Like now!

    :thumbsup:
     
    Maria Gjerpe and snowathlete like this.
  8. Sasha

    Sasha Fine, thank you

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    I wonder if many people realise that Norway has a population of 5 million, as opposed to the US's 314 million and the UK's 63 million. And look at the success of this campaign! I'd be exploding with pride if I were Norwegian.

    I get the impression that Norwegians have a great community spirit and that that has helped but clearly, larger countries ought to be able to raise much more money! Now that Maria has set the standard, I hope we'll see a step-change in donations to all our research projects.

    I bet I'm not the only one who will be going to Norway on holiday if I get better! :)
     
    snowathlete and Dolphin like this.
  9. Maria Gjerpe

    Maria Gjerpe

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    I am so touched to read this article. Thank you for your very nice words, Sasha, and to you who has commented - and the support you have all given me and that you wanted to come along. Means a lot to me.

    I would like to share some of the thoughts with you.

    The money is actually not THE most important, and I say so because I tend to think in "long terms", and how to change the whole debate itself. If the scientist had got the funding the first time they applied, I do not think we would have seen the change in the climate, like I have seen in Norway the past weeks. And that is important for the years to come! Change in climate, means more interest, means better scientist, means findings, means funding etc etc.

    When I work, I always thing "system-wise" if I want to change something. And I will!

    How can I change the system from within? It must always be by changing how people tend to think. It's always about individuals.

    In MEandYou it was about dealing with the issue, more funding to research on ME, in a positiv way, so that people wanted to listen to me, and didn't get pulled off by negative or offensive communication. It's quite human to prefer to listen to and act upon an active, positive message, than a negative one, right? At least, that is how I prefere it.

    It was also about just walk on the path I wanted to walk on, never look back - and expect others to follow.

    I knew that it was also about getting support in such a scale (Here: enough money and "likers"), so that it became visible to those who decides the money-matters.

    Another factor I was planning was to get supporters OUTSIDE the patient group itself. In that way it was impossible to blame the patient group as "rebellious" or "agressive" and so on, because it was no longer about "the patient group", but about research on "a medical condition that could strike anyone. Me to". Therefor the name MEandYou ;-)

    As you see: another way to make MEandYou very visible. It became loud and clear that is also about friends and relatives - and supporters with empathy.

    And then - The message had to be easy to understand, easy to adapt, and in one, clear direction, with visible and like-able, graphical elements. And never, never do anything else but to stick to the well-planned strategy.

    (Now, while I am writing this, I think that I'll rather make a blogpost out of it, and post the link for those who wants to read how I planned and what I was thinking when I was working with MEandYou.

    Is that ok?)

    High Five from Maria,
    reporting from Haukeland Hospital, ready for tomorrow morning with a check on almost 2.7 milloner kroner! :)
     
    biophile, Roy S, Simon and 12 others like this.
  10. Sasha

    Sasha Fine, thank you

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    I was delighted to do the article, Maria - thank you again for everything you've done.

    What a fascinating post! The rest of us need to learn from what you've done and I'll be very interested to read the rest of it on your blog.

    2.7 million kroner! :balloons:
     
  11. Purple

    Purple Bundle of purpliness

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    Let’s all learn Norwegian. I know 'tusen takk' - which I *hope* means 'thank you'.
    (I thought there were meant to be two 's' - tussen takk - but Google Translate informs me that 'tussen' means 'goblin'.)
     
    snowathlete likes this.
  12. Sasha

    Sasha Fine, thank you

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    Even goblins can be grateful...
     
  13. Mark

    Mark Acting CEO

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    Absolutely - great idea and great post. Some really valuable insights into effective campaigning. Your point about positive messages working better than negative messages is absolutely crucial in my opinion.
     
  14. Neunistiva

    Neunistiva

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    Dr Maria Gjerpe thank you million times over. I don't know how I would handle being sick with ME without having hope and something to look forwards to.

    I'm proud that I managed to put Croatia on that list :)
     
    Maria Gjerpe and Sasha like this.
  15. Maria Gjerpe

    Maria Gjerpe

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    Hehe...YES! It' s spelled "Tusen takk" :)
     
  16. Kina

    Kina Moderation Team Lead

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    AMAZING!!!!! :thumbsup:
    WONDERFUL!!!!!:thumbsup::thumbsup:
    SPECTACULAR!!!!!:thumbsup::thumbsup::thumbsup:

    Thank you so much for all your hard work Maria.

    Thank you Sasha for the excellent article.
     
  17. beaker

    beaker CFS/ME 1986

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    Thank you .
     
  18. Snow Leopard

    Snow Leopard Senior Member

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    Heh.

    That always sounds better than a bank cheque...

    Reminds me of Happy Gilmore and his giant novelty cheques.

    As for Maria, you are a real hope for many of us. :)
     
  19. Sasha

    Sasha Fine, thank you

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    Valentijn likes this.
  20. Sasha

    Sasha Fine, thank you

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    Valentijn likes this.

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