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Crowdfunding clinical research on CFS/ME – engaging both sides of the Atlantic!

Within 90 days we are going to crowdfund 7 million NOK (1,2 mill USD) to fund a specific study on 140 ME/CFS patients at Haukeland Hospital in Bergen, Norway. Are we the first in the world to crowdfund a clinical trial? We do not know of any that has done that yet. I think it is rather unusual. If this clinical trial shows us that we can use medical treatment, this will be a major breakthrough. Crowdfunded be the people themselves?

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

Yes, we can!

Background:
In 2012, a study from Haukeland Hospital on the use of the immunosuppressive medication Rituximab against ME caused 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 is too small to draw definitive conclusions. If the findings turn out to be replicated in a bigger study, this might be the most significant breakthrough in the research history of ME. The researchers at Haukeland applied for the support of 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 failed to allocate funds for this study in favour of other projects.

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

So – could there be other ways to finding the necessary funding?

Is it possible to crowdfund a clinical trial?

MEandYOU:
I´m Maria Gjerpe, medical doctor and ME patient for many years. I have been a pilot patient in the Haukeland study. The effect of Rtx on my health has been profound. Rtx, has to be infused regularly to keep me healthy. 80% of the patients experience a relapse without the infusions after a certain period of time, if we look at the data from the phase 2 study. This could happen to me too.

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

To ensure that I am capable to handle this enormous job I´ve set out to do, together with other people that 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 the phase 3 of the Haukeland study happen.

I’ve now used three months to develop the tools that make it possible to crowdfund the 7 million NOK. Now we need to get the study started.

MEandYouvideo – a presentationvideo

From national TV: A Norwegian breakthrough  https://www.youtube.com/watch?v=ZBCXKIRBQ-s&feature=plcp&list=FLNjFMqHhhmu8gVEWIoYXG4A

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

SupportPrimeMinisterCandidate https://www.youtube.com/watch?v=jSIarwnjDkM

and SpiegelOnline has written an article about MEandYou: http://www.meyou.no/meandyou-in-der-spiegel/

The campaign
Nine days after the launch of MEandYou, we passed half a million NOK. There are contributions from people from both Norway and abroad. The minimum amount is 20 NOK, the largest is 100 000. Many hundreds have donated money.

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

Links to the study

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0026358

I just wanted you to know about this initiativ. If you think it is interesting, please contact me or read more at our section for English readers: http://www.meyou.no/info/

You can find us on

MEandYou on Facebook
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MEandYou Website

Regards,

Maria Gjerpe
Doctor of Medicin and a ME-sufferer,
Founder and Chairman of the Board
MEandYou

 

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