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California 2014: IACFS/ME Day Four: Translating Science into Clinical Care: 23 March 2014
It is Day Four and the final conference session from San Francisco. In this review we hear from Searcher about the neurosciences session, and PET and EEG analysis, then a study on cognitive functioning, followed by a debate on the revised 2014 IACFS/ME Primer, and then we wrap-up the...
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MEandYou and Rituximab: Dr Maria Gjerpe’s Fundraising Marathon Update

Discussion in 'Phoenix Rising Articles' started by Mark, May 6, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
    Dolphin, alex3619, Bob and 1 other person like this.
  2. Sasha

    Sasha Fine, thank you

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    Bob, Simon and Ember like this.
  3. snowathlete

    snowathlete

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    Thank you Sasha, a really excellent and important cause and you've done a great job of informing us.

    I have been really impressed with Maria - all that hard work...and it really brings it home that this treatment does work, at least for a time...otherwise she wouldn't be able to do this at all!
    It's such an important avenue to pursue, and I think what has been achieved already is quite remarkable.
    Sasha, ggingues and Bob like this.
  4. Simon

    Simon

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    Excellent piece, Sasha, thanks. And Maria has done an amazing job; assuming she raises lots of money, but not the full amount, are there likely to be other sources of funding for the Fluge/Mella Rituximab trial that could make up the shortfall?
    Sasha likes this.
  5. Bob

    Bob

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    A great article, thanks Sasha. It's difficult to understand exactly what's going on in Norway, because of the language barrier, so thanks for explaining so many details. I'm amazed at how much they've raised.

    Now to have a look at the video.
    Sasha likes this.
  6. Bob

    Bob

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    Based on past reading about the subject, my understanding is that there is still a chance the the Norwegian government will foot the entire bill for a trial. In which case, the public donations will be used for similar research.
  7. Tally

    Tally Senior Member

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    It is amazing what Dr Maria Gjerpe has done. I am truly grateful to her.

    I am a bit disappointed at how many people have donated. Only a few thousand patients, and there are millions of us sick with ME in the world.
    ukxmrv, snowathlete and Sasha like this.
  8. Sasha

    Sasha Fine, thank you

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    Hi Simon - as it says in the article, they're asking for funding from businesses and charities and those organisations take time to make decisions. MEandYou will run until February 2014 to give that money a chance to come in. I believe they're also reapplying to the government but I would think it would be unusual for a govt to increase its funding to a particular trial when they've already donated (they gave a large chunk at the beginning - 4 million krone, if memory serves, leaving 7 million krone to raise).
    snowathlete and Simon like this.
  9. Sasha

    Sasha Fine, thank you

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    That's not my understanding of how things work - even in normal times, let alone in these times of recession I don't see any government replacing funding that has already been raised when there are other projects all clamouring for money. They've already paid 4 million krone (I think) of the original 11 million krone needed. At best we could hope for a top-up.

    I've asked Maria to come and answer these questions in case my understanding isn't accurate - they're important questions.
    snowathlete and Bob like this.
  10. Maria Gjerpe

    Maria Gjerpe

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    Oslo, Norway
    Hi everybody!

    Thank you, Sasha, for the great effort in writing this article, and thank you PR that wants to publish it.

    I am "nothing" without all the supporters and those of you who carry the word. Without you, I would only be in my closet, fundraising in the darkness. Without you donators, there would be zero on the account.

    This is a field that we know little, also about what would happend in the future. That applies also to the funding questions.

    This is what I know:
    -No, I do not know of any body at the time being that has said that they will fund this 3rd phase-study.

    -Yes, Haukeland Hospital has applied once more for money from the Research Council of Norway (RCN, but they have turned them down before, and there is no promises of any funding through governmental/official channels at the time being.

    - Yes, MEandYou has applied for funding from several organizations and businesses, but it takes time to get answers from them.

    IF the study gets more funding than it seems to have at the time being, the Haukeland scientists actually both need more funding for this study, AND there are a lot of other very important (in my eyes) work in the field of biomedical research on ME that they need to pursue at Haukeland hospital.

    This team is amongst very few, again from my point of view, reliable scientists that may point the direction for an important path for the future in science for ME-patients.

    Are you on Facebook? Follow updates: https://www.facebook.com/MEYOU.no I try do do them both in English and Norwegian for you to get information!
    snowathlete, Bob, Simon and 1 other person like this.
  11. Nielk

    Nielk

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    While I was reading this article, I felt like I was receiving a blood transfusion. Thank you, Sasha!
    I have to be honest with you. When I first heard about this monumental project, I thought to myself that there is no way that they can come close to accomplishing raising so much money in such a short time. I didn't know Maria then. Wow. She is a one person army!
    ukxmrv and Bob like this.
  12. Sasha

    Sasha Fine, thank you

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    I know - it's absolutely jaw-dropping. At the top of her Facebook page:

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

    there's a big banner with 140 purple hands, each hand representing one patient in the 140-patient trial that she's trying to fund. Every time she gets another patient's-worth of funding, one of the hands turns bright red.

    At the beginning of this, none of the hands were red. Only a couple of weeks ago, only the bottom line and a bit had filled up. But since Maria went to the bank and got those donations, almost two lines of hands - representing an amazing 37 patients funded - are now red.

    It's a great way of showing how much she's raised - over a quarter of the total funding already and in a very short space of time.

    When people see others donate to a cause, and see it winning, they'll join in. I hope that will be the case with Maria's efforts.
    Bob and Nielk like this.
  13. Maria Gjerpe

    Maria Gjerpe

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    May I suggest something, in the spirit of what Sasha says here, and that she has written an excellent article on earlier?

    If and when you donate: Write it on our Facebookwall (https://www.facebook.com/MEYOU.no) :
    "Yes! I have donated, and I´m proud of it". and then where you come from.

    That will show people who hesitate that its perfectly allright to support too. (And when you donate, you get something we made, Use it if you like and support twice :))

    High Five!
    Dolphin, Sasha, Bob and 1 other person like this.
  14. Sasha

    Sasha Fine, thank you

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    One more red hand now - 38!

    Just amazing...
  15. Maria Gjerpe

    Maria Gjerpe

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    Yes, 38.
    Thanks to you, folks, that donate and spread the word!
    Bob likes this.
  16. Nico

    Nico Senior Member

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    I "liked" the MEandYou Campaign on FB a while ago, but haven't been keeping close track. This is amazing news, and offers such hope. I won't go into the "if only's" .... about this kind of study being funded in the US.... Thank you Sasha, for a well written article & video upload....and thank you Maria for your hard work.
    Sasha and Bob like this.
  17. Maria Gjerpe

    Maria Gjerpe

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    Oslo, Norway
    Great to hear that Sashas article got you "on track" again ;-)

    It´s not the easiest part, to be bilingual on Facebook, but I try to do the updates in both languages, and all the "badges" added are in English and Norwegian. I hope you share them!
    Nico, ukxmrv and Bob like this.
  18. Nico

    Nico Senior Member

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    Maria, I'm starting to follow you more closely now. What I do is copy and paste the Norsk into google translate, and it does a pretty good job....

    http://translate.google.com/#no/en/Lykke til! Heier på dere!

    I've been reposting your campaign efforts to my wall, with general descriptions of your efforts.

    I'm a little confused now.... how much more needs to be raised, and by which deadline? The last I read you have enough funding for 36 patients right now?

    Takk!
  19. Sasha

    Sasha Fine, thank you

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    Still needs $900,000 - Maria's 90-day campaign ends around 6 June, I think, but the MEandYou coffers stay open until Feb 2014. A lot of funding has been applied for and it takes businesses and charities a while to make decisions. There's funding for 39 patients now but the trial can't begin unless funding for all 140 is in place.

    It was Maria's big event outside the Norwegian parliament today - I wonder how that went!
  20. Sasha

    Sasha Fine, thank you

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