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MEandYou: 90 Days to Raise $1.2 Million for Rituximab Trial!

Dr. Maria Gjerpe, an ME patient for 30 years, explains how and why MEandYou are going to crowdfund a Rituximab study.

MEandYou_largeWithin 90 days we are going to raise 7 million Norwegian krone ($1.2 million) to fund a study on 140 ME/CFS patients at Haukeland Hospital in Bergen, Norway.

Will we – the patients, relatives, friends – be the first in the world to crowdfund a clinical trial?

And can we engage both sides of the Atlantic to make it happen?

Yes!

Background

In 2012, a study at Haukeland Hospital on the use of the immunosuppressive medication Rituximab against ME attracted international attention. Two-thirds of the patients in the study experienced significant improvement after being treated with the drug.

However, with only 30 patients the study was too small to draw definitive conclusions. If the findings are replicated in a bigger study, this might be the most significant breakthrough in ME’s research history.

The scientists at Haukeland applied for support for a larger study of 140 patients through the Research Council of Norway (RCN). In December 2012, the RCN stated that the scientific quality of the application was worthy of support, but they failed to allocate funds for this study in favor of other projects.

Patients reacted with despair and frustration at the prospect of having to wait even longer for answers that could bring the research community closer to effective treatment and knowledge about the underlying mechanisms of ME/CFS.

So could there be other ways to find the necessary funding?

MEandYou

Is it possible to crowdfund a clinical trial? I’m Maria Gjerpe, medical doctor and an ME patient for many years. I was a pilot patient in the Haukeland study. The effect of Rituximab on my health has been profound but it has to be infused regularly to keep me healthy. 80% of patients relapse without the infusions after a certain period of time, according to the Phase 2 study data. This could happen to me too.

I am not going to get any more infusions after my last one on 14 March 2013. I do not know how long I will be well and healthy, and have the energy and capacity that I experience now.

So, with three other board members, I set up an organization, MEandYou, specifically to raise 7 million krone for this 140-patient trial. You can watch a video about MEandYou by clicking on the image below.

MEandYouVideo

To ensure that I can handle this enormous job that I´ve set out to do, together with other people who want to join in, and to be sure that I´m not going to be sick during the crowdfunding campaign, I´ve decided that 90 days is the limit: 90 days to raise the money that can make Phase 3 of the Haukeland study happen.

The campaign

The campaign has received public support from the Research Council of Norway, and several politicians are supporting the idea of more research on ME/CFS.

Maria presents nine days’ worth of fundraising to Drs Mella and Fluge.(Image courtesy of Haukeland Hospital)

Maria presents nine days’ worth of fundraising to Drs Mella and Fluge.
(Image courtesy of Haukeland Hospital)

Nine days after the launch of MEandYou, we passed the half-million-krone mark ($85,000) and I handed over the funds at Haukeland Hospital.

Hundreds of people have contributed both from Norway and abroad with donations ranging from 20 krone to 100,000 krone (US: $3 to $17000; EU: 2.5 to 13300 euros). There are no expenses in the organization. Everybody works for free. All the money goes directly to Haukeland and the updates on our website show the total amount. If you pay via PayPal, it keeps the transaction fees as low as possible.

How to join in

The crowdfunding campaign ends on 6 June. The power of social media will help us reach patients, relatives, friends and supporters abroad, but this is not enough. We also want to reach the wider community on both sides of the Atlantic, to really get this crowdfunding campaign going.

  • We ask you to ask bloggers, forums, journalists and everyone you think would like to be a part of this initiative, to participate. You can download support badges here.
  • Share this Phoenix Rising article.
  • Share this letter at MEandYou with blogs, patient forums, friends, journalists and others.  We are sure people want to be a part of this initiative, if they only get invited.
  • This is actually about money, of course. Use our PayPal if you can: – but even more important, invite your friends.

You know what? We can do this together. This clinical trial is too important to stop and we must continue to seek answers in science.

Join us. Take part. You can find us on Facebook, Twitter and our website.

Regards,

Maria Gjerpe
Doctor of Medicine and ME sufferer
Founder and Chairman of the Board of MEandYou

Further resources

Fluge and Mella’s Rituximab study in PLoS ONE

Newspaper interview with Maria Gjerpe and Prof. Olav Mella

Video of Prime Ministerial Candidate Erna Solberg supporting the campaign

MEandYou_large

{ 58 comments… add one }

  • Christine April 22, 2013, 8:58 pm

    The MEandYou crowdfunding just passed the 1 Million NOK mark! That's over $180,000 and 20 patients funded! :balloons:

    The bigger news is that their daily average is on it's way up. After averaging about $2,500 per day for the first 45 days, the last 3 days they brought in over $26,000. That's an average of almost $9,000 per day!

    To reach their goal, they will need to step up the average to about $25,000/day over their last 40 days.

    We can get the word out to people, both healthy and sick. Together we can do this!

    My husband and I are seeing a great response with our Jesus Cares About M.E. and You campaign, and we will not stop praying or working until Maria's campaign is over and the money is raised.

    Keep up the great work, everybody!

    -Tom and Christine Jarrett
    Indianapolis, Indiana USA

    P.S. Many people are telling us they want to donate, but they say they can't figure out how because they don't have a PayPal account. The good news is that you do NOT need a PayPal account. You can give directly by Credit Card. Just click on the yellow Donate icon at http://www.meyou.no/this-is/donate-here/ right underneath the purple PayPal banner. You can also click on the little credit card icons. It will take you to a page where it says "Don't have a PayPal account?" where you can click on the small "Continue" link and proceed with your Credit Card donation. It's very easy! Even so, we have contacted Maria to ask her to update the donation page to make it clearer that you can donate by Credit Card.

  • Christine April 24, 2013, 8:45 pm

    Maria recently shared an amazing video to remind us all "why" and "what" we are doing in getting behind the MEandYou crowdfunding campaign. I know many saw this video when it first came out in 2011 after the Norwegian study was published, but it is worth watching again. It's a real tear-jerker.
    (search "Norwegian Breakthrough in ME-research" on Youtube)
    **To use ENGLISH subtitles, click/activate the "CC" icon on the videobar.**

    I also wanted to take this opportunity to say a special thank you to Sasha for her great work on this forum and elsewhere. The more time we spend on Phoenix Rising, the more we see Sasha's presence in bringing people together to do important advocacy work. Writing clear instructions about how to get involved and then keeping us informed on the progress of these contests and campaigns that are much more than just contests, but are vital and transforming to the future for all of us affected by M.E. Thank you, Sasha. You inspire us.

    -Tom and Christine

  • Sasha April 24, 2013, 9:05 pm
    Christine

    Thank you, Sasha.

    Thank you! That is very kind of you. :)

    That I have stuff to write about is a reflection on the enormous combined effort of everyone involved in all sorts of fundraising and advocacy actions – I'm hugely impressed by what others do, which is what inspires me to write about it, and I'm honoured and privileged to be in a position to broadcast it a bit.

    I really think our community is growing rapidly now in terms of the number of people joining and and what we're collectively able to achieve.

  • Sasha April 27, 2013, 11:21 pm

    MEandYou still going strong – not only did they just win 25,000 krone ($4,300/£2,800) a couple of days ago in an online voting contest which many here on PR voted in, they've just been awarded 60,000 krone ($10,300/£6,600) by the Kavli Foundation, an humanitarian foundation which my research shows is based on money from Primula cheese!

  • snowathlete April 28, 2013, 12:04 am
    Sasha

    MEandYou still going strong – not only did they just win 25,000 krone ($4,300/£2,800) a couple of days ago in an online voting contest which many here on PR voted in, they've just been awarded 60,000 krone ($10,300/£6,600) by the Kavli Foundation, an humanitarian foundation which my research shows is based on money from Primula cheese!

    [​IMG]
    Thats cool! Primula rocks!

  • Sasha April 30, 2013, 12:20 am

    Pity we can't get Norwegian TV to see this, mentioned on Maria's Facebook page:

    Tomorrow, in the evening, at national TV2-news, you will be able to watch your donated money be handed over to Haukeland hospital. That will happen inside the banks vault- in cash!

    Sounds like a great media event! Hope it ends up on YouTube or something. :)

  • Sasha April 30, 2013, 8:44 pm

    Wow – the Kavli Foundation and Norwegian Bank SpareBank 1 SR-Bank surprised Maria today with an extra half a million krone during her TV presentation to Drs Fluge and Mella of the 1 million krone that MEandYou had raised so far – that's a huge boost!

    Half a million krone is about $90,000/£55,000/Eu65,000.

    She asks that we visit their respective Facebook pages and thank them – good idea!

    https://www.facebook.com/srbank?group_id=0

    https://www.facebook.com/Kavlifondet?group_id=0

  • snowathlete April 30, 2013, 10:16 pm
    Sasha

    Wow – the Kavli Foundation and Norwegian Bank SpareBank 1 SR-Bank surprised Maria today with an extra half a million krone during her TV presentation to Drs Fluge and Mella of the 1 million krone that MEandYou had raised so far – that's a huge boost!

    Half a million krone is about $90,000/£55,000/Eu65,000.

    She asks that we visit their respective Facebook pages and thank them – good idea!

    https://www.facebook.com/srbank?group_id=0

    https://www.facebook.com/Kavlifondet?group_id=0

    fantastic. Thats the real benefit of this kind of fundraising inititive paying off, as the momentum builds you can get publicity and that really helps. Maria is doing a great job.