1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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MEandYou: 90 Days to Raise $1.2 Million for Rituximab Trial!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 21, 2013.

  1. wdb

    wdb Admin

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    What happens if the target isn't reached ?
  2. Tuha

    Tuha Senior Member

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    hey people, let´s be a bit optimistic. I think the all study costs 11 mil NKR. They got already 4 mil. NKR from the governement. So on the beggining of the campaign we needed 7 mil. NRK. The patients collected only I think after 2 weeks 615 000 NRK what is almost 10 % from the amount which we need. I think this looks really optimistic and in my opinion it´s only the question of time when they will start the study.

    I think they said if the target will not be reached they would use money for ME research.
  3. Purple

    Purple Bundle of purpliness

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  4. justy

    justy Senior Member

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    Hi Purple, thanks for the detailed instructions - i faffed about for ages trying to get the banner saved as a signature. I can't get the second part to work though (making the links clickable) i did what you said, but when i clicked on the banner it didnt highlight blue but had dots around it so it could be made bigger or smaller.

    When i pasted the url as you said , in the media box (ladder icon) it said it could not be done. Any ideas?

    All the best.
    Justy.
  5. Maria Gjerpe

    Maria Gjerpe

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    Thank you for helping us all out be asking each others questions and answering them. Thank you, Phoenix Rising, editors and readers, to participate and engage. We in MEandYou are nothing without the "togetherness". It is ME AND the you.

    Thank you for your explanation on the dynamic badges :) They are real cool (I think!) and you can find them in different colours as well.

    This is a full list of banners to download. Please do so at your blog and where ever you can find a spot, and share them:
    http://www.meyou.no/donate/downloads/

    Are your friends wondering what MEandYou is about? Show them this:
    http://www.meyou.no/this-is/

    To pay the easiest way-tell them about Pay Pal:
    http://www.meyou.no/paypal/

    Tell your society about MEandYou and why this is important:
    http://www.meyou.no/donate/share-info-about-us/

    I made a long list FAQ. I hope it will answer most of the question. Keep helping each other as you do know. Great!
    http://www.meyou.no/frequently-asked-questions/

    Wondering about what will happen to the money you donate?
    http://www.meyou.no/donate/what-will-happen-to-the-money-i-donate/

    ...and this is the association and the board:
    http://www.meyou.no/this-is/the-association/

    We decided NOT to bring it to Kickstarter etc, to avoid the funding plattform from getting the part of YOUR money.

    We want as much of it directly to the scientist. We know that you, and the scientist, do not have any money left to spare.

    ALL of your money will go to biomedical research on ME, for transfer cost to Pay Pal. I, and everybody else, is working totally for free. I, myself, use all of my healthy time for doing this, apx 10-12 hrs/day. I just tell you, so that you should now that I want this done, while I have health to do it, and do everything to make it happen. And that is my only goal.

    We have just started and heading in the right direction - but, of course, we can not do this if we do not lift this together. You all know that.

    We can either sit and look and hope for the best - or just do it. Together, with our friends, our relatives and through our connections.

    Walk with us? Yes?

    Best wishes from a humble, but strong and targeted, Maria. :)
    maryb, justy and Sasha like this.
  6. Svenja

    Svenja

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    Thank you Maria for this crowdfunding initiative! :thumbsup: I would like to translate your blogpost into German, is this ok for you? And there are others, who would like to tanslate the subtitles of your promotion video into German too.

    @ purple thanks for the signature instructions
  7. Maria Gjerpe

    Maria Gjerpe

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    Svenja likes this.
  8. Chris

    Chris Senior Member

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    Maria (and of course PR)--thanks again--this is a great and exciting project! A larger Rituximab study could be a real game-changer for us--even Wessely and White might have to take notice! Even government agencies! (well, maybe...). Now off to feed in a few (sorry, only a few) more bucks into the count. Best, Chris
    Svenja, Blue, justy and 1 other person like this.
  9. ballard

    ballard

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    I just made a donation. Best wishes for your efforts.:thumbsup:
    Svenja and Maria Gjerpe like this.
  10. Purple

    Purple Bundle of purpliness

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    Hi Justy - I am not sure why you cannot highlight the banner in blue (clicking anywhere on the picture did this for me). The URL for the link where to donate should be pasted in the link/chain icon - 6th from the right (if you hover over it, it will say 'Insert/Edit Link'). Please PM me if you like :)
  11. maryb

    maryb iherb code TAK122

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    Maria - don't forget to rest as well - very important - especially when pushing yourself:sleep:
    I have every faith that you will achieve it, lots of people behind you and donating what they can.
    All those little bits add up fantastically. What a lot of satisfaction it will give us all, sock in the eye to the psychs.
    justy likes this.
  12. Jacque

    Jacque Senior Member

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    How lucky you are to be in the 2/3 who respond!!!
  13. taniaaust1

    taniaaust1 Senior Member

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    That was very good to read what will happen to the money if enough isnt raised for this phase 3 trial. Good to know that that event has been well thought out and the money will still end up going towards good ME/CFS research..
  14. Maria Gjerpe

    Maria Gjerpe

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    Thank you for your kindness, your support and your engagement. I´m quite impressed. Some of you has even sent me privat messages offering assistance with everything from translation to press-releases.

    If any of you see that there are forums that might want some info about MEandYou-initiativ, something on our site that you would help translating into your languages etc - please feel free to do so, and tell us.

    Regarding where the money goes: We have an written agreement, and we have thought a lot of what if we can not raise the whole amount: Everything will still go to scientist that do serious, good ME-research. I want to keep the interest in this field warm, also with funding.

    http://www.meyou.no/this-is/what-will-happen-to-the-money-i-donate/
    Svenja, ukxmrv, Sasha and 1 other person like this.
  15. Sasha

    Sasha Fine, thank you

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    Just seen this update on Maria's Facebook page today - well done, Maria:

    NOK 667 753
    US$ 114 419
    EUR 88 942
    GBP 75 335
    _____
    13 patients financed! http://www.meyou.no/paypal/

    Walk with us. Like, share, invite friends - and we will make it together.

    ****

    On Friday, when this article went up on Phoenix Rising, she'd just announced on Facebook that they'd got enough funding for 12 patients and the money was:

    NOK 612 239
    EUR 81 300
    US$ 105 000

    So that's nearly $10k in a few days - wow!
  16. Maria Gjerpe

    Maria Gjerpe

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    :)

    Well done, all of you that has donated, and engaged by sharing and helping out in different ways. More to come!

    Keep sharing, and if your are at Facebook, please consider join us and share the updates and our pictures of growing hands. We love them, and I hope you do to :)

    https://www.facebook.com/MEYOU.no
  17. Sasha

    Sasha Fine, thank you

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    For some weird reason, I couldn't get an auto-translation of the Facebook page into English - I keep getting a message saying, 'Translation failed because of a server error'. Is anyone else getting that?
  18. Maria Gjerpe

    Maria Gjerpe

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    Yes, I´ve heard about that before. You can not use Google at Face, I think?
  19. Maria Gjerpe

    Maria Gjerpe

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    Today, at Der Spiegel about MEandYou:

    http://www.spiegel.de/wissenschaft/medizin/cfs-me-aerztin-will-studie-per-crowdfunding-finanzieren-a-891721.html
  20. Sasha

    Sasha Fine, thank you

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