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

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



Within 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.


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)

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

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Comments

What happens if the target isn't reached ?
 
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.
 
Follow these steps to add this fundraising campaign's banner to your forum signature and make it into a link that takes people straight to the page where they can donate by Paypal. It is simpler than it looks!

Note: there are two images - the purple one like the one in my signature and a white one - choose whichever one you like.

(1) go to ‘Signature’ by dropping down the arrow next to your name on the forum (top right of the screen)

(2) click the ‘Insert/Edit Image’ icon that looks like a tree

(3) a box pops up asking for URL of the image – paste in this for the purple banner: http://phoenixrising.me/wp-content/uploads/MEYou_490.png
or this for the white banner: http://phoenixrising.me/wp-content/uploads/MEYou_white_490.png

(4) click ‘Insert’

NB – the banner is not a clickable link yet but just a static image. To make it a clickable banner that takes people to the Paypal donation link:

(5) while still in your signature, click the banner image that you just inserted – it will become highlighted and blue

(6) click the ‘Insert/Edit Link’ icon that looks like a chain

(7) a box pops asking for the link URL – paste in this: http://www.meyou.no/paypal/

(8) click ‘Insert’

(9) click ‘Save’ to save the changes to your signature


For people who find the banners in the signature hurt their eyes, you can turn off people's signatures:
At the top of the page, click the down arrow (triangle) next to your name and choose 'Preferences'. Scroll down until you see 'Options' and untick the box that says 'Show people's signatures with their messages' and click the 'Save' button at the bottom.
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.
 
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. :)
 
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
 
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
 
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.
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 :)
 
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.
 
How lucky you are to be in the 2/3 who respond!!!
 
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/
 
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!
 
:)

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
 
:)

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
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?
 
:)

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
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?
Yes, I´ve heard about that before. You can not use Google at Face, I think?
 
Today, at Der Spiegel about MEandYou:

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