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

Thank you som much for all your support.
I just want to share this Facebookpage with you. It really tells us why we want this to be done:

This is hard to read and has been posted on the Facebookwall to Lars TH Narvestad, former Vice President of Hydro, a huge oilcompany. One of his friends has posted this for him. This is the reason for MEandYou:

____

"Dear friends, family, neighbours, former colleagues and teammates,

For more than 40 years I was able to lead a rich and privileged life, taking me to many parts of the world and enabling me to meet and engage with fantastic people. I am eternally grateful for all the good times and the numerous "Kodak"-moments I shared with so many of you. It was a journey of a full lifetime,Thank You!

It is therefore not with bitterness I tell you that I for the last 8 years have been bedbound with a devastating neuro-immune illness known as ME (CFS). In my case, the disease appears progressive, now tying me to my bed for 22 hours a day, isolating me from everyone and everything that I hold dear.

Despite its seriousness and chronic nature, this disease is largely ignored by the medical community, conveniently explained with psychiatry, and without any meaningful public funding.

If you feel compelled to help me and hundreds of thousands of ME-sufferers, please support a crucial, world-leading research study of the most promising drug in the history of this disease. You can do so by clicking on the link below, "like" and share with your friends, and donate whatever you can spare (and read more about the study and its importance):

http://www.meyou.no/donate/

for norwegians: http://www.meyou.no/

Donations so far have varied from 20 NOK (USD 3.5) to 100.000 NOK (ca. USD 16.000)

All the Best,
Lars Th./ Theo"

PS. This message has been posted to my wall on my behalf, as I am unable to be on Facebook."
 
Thanks for your work to fundraise for this important study. Its great that you have some health at the moment, and I hope it lasts a long time for you. I think we all want to see this research happen, so that many of us have a chance at health or something close to it, and on an ongoing basis. I think it is very sad that the Research Council of Norway are not funding it. Sure, they support it, and even agreee it should happen, but if they don't help, what good are they? It's the same story in the UK and elsewhere. It shouldn't be like this. But it is.
So, I agree that we have to raise the funds ourselves, because no one else is going to do it for us. I'll be making a donation and I hope other people do as well. I would encourage anyone who does, to post here saying so, as this helps encourage others to do likewise.
 
Thanks for your work to fundraise for this important study. Its great that you have some health at the moment, and I hope it lasts a long time for you. I think we all want to see this research happen, so that many of us have a chance at health or something close to it, and on an ongoing basis. I think it is very sad that the Research Council of Norway are not funding it. Sure, they support it, and even agreee it should happen, but if they don't help, what good are they? It's the same story in the UK and elsewhere. It shouldn't be like this. But it is.
So, I agree that we have to raise the funds ourselves, because no one else is going to do it for us. I'll be making a donation and I hope other people do as well. I would encourage anyone who does, to post here saying so, as this helps encourage others to do likewise.
Thank you for your comment, snowathlete. Great if those that have the capacity shares thoughts.

I agree, it should not be this way, but this is the way it is. The Research Council of Norway refuses 9 out of 10 projects, and there are many good ones.

This time, we surpass the regular channels, and do fund this important trial ourself, together with friends, colleagues and others that cares for knowledge. The good part is, we are a huge group. People that did not know anything about ME starting to engage.
I love it!

As I always said - it´s the healthy ones that should care for and help the sick. One day it´s the other way around.
 
I donated some time ago, perhaps I will/can make another donation.

GG
 
I donated some time ago, perhaps I will/can make another donation.

GG
Great with your former donation, ggingues, and also, consider inviting your friends and share this information:

http://www.meyou.no/donate/share-info-about-us/

:)
 
Reddit is a site where everyone can vote for newscases. If a case get a lot of thumbs up, the journalists will look more careful.

Do you want the world to be aware of what we all are doing in MEandYou?

Click this link, register, and then push the arrow which point upwards to give the article a point. Please leave a comment. Thank you.

http://www.reddit.com/r/medicine/comments/1ak3ab/norwegians_tries_to_crowdfund_important_mecfs/?sort=top
 
Reddit is a site where everyone can vote for newscases. If a case get a lot of thumbs up, the journalists will look more careful.

Do you want the world to be aware of what we all are doing in MEandYou?

Click this link, register, and then push the arrow which point upwards to give the article a point. Please leave a comment. Thank you.

http://www.reddit.com/r/medicine/co..._tries_to_crowdfund_important_mecfs/?sort=top
Hi Maria - I just registered on Reddit (took a few seconds, doesn't require your email address) but I can't find this arrow. Can you tell me where it is (or can anybody mark it on a screenshot)?

Edit: Oh! Seen it. At the extreme top left of the screen there's a little green cartoon man with red eyes. Right underneath him there are two pale grey buttons. We need to hit the 'up' arrow.
 
Hi Maria,

Thank you for heading up this terrific campaign. Do you know if anyone has asked the Rituximab manufacturer if they would supply the drug at a reduced cost for this study? As I understand, the patent on Rituximab is expiring shortly and they may have no incentive to do so. But still, it is the difference of 140 patients using this drug (if the money is raised) or none of these patients using the drug. I would think that some quick math by the manufacturer would show that it is better to reduce their profit margin and supply the drug than to have no profit at all on these patients.
 
I've been a Redditor for a long time, it is really great site for seeing interesting links around the web, and really easy to sign up for - just choose username and password.

However, asking people to upvote a link is against their rules, so please everyone be careful when you ask around. It would be a pity to get banned when it's for such a worthy cause.
 
Hi Maria,

Thank you for heading up this terrific campaign. Do you know if anyone has asked the Rituximab manufacturer if they would supply the drug at a reduced cost for this study? As I understand, the patent on Rituximab is expiring shortly and they may have no incentive to do so. But still, it is the difference of 140 patients using this drug (if the money is raised) or none of these patients using the drug. I would think that some quick math by the manufacturer would show that it is better to reduce their profit margin and supply the drug than to have no profit at all on these patients.
Hi SpecialK82,

No, they have not asked the manufacturer, and I do not think they will do that either. They might think that its best to be totally independent in their research.

These money will be raised. I´m confident. Just imagen how many who are sick, know someone who are sick etc. If everyone invite, we will be there in short time :)
 
I've been a Redditor for a long time, it is really great site for seeing interesting links around the web, and really easy to sign up for - just choose username and password.

However, asking people to upvote a link is against their rules, so please everyone be careful when you ask around. It would be a pity to get banned when it's for such a worthy cause.
Oh, I did not know!
Thank you for your warning.

I am not going to tell anyone that they should click the link and give an arrow-up anymore.
 
12!
NOK 612 239
EUR 81 300
US$ 105 000

(I don´t know how to add a pic, but it is suppose to come with a number "12" :) Take a quick look? https://www.facebook.com/MEYOU.no )
 
First off, thank you, Maria, for putting this together. It's an excellent idea.

Is there a way that we could do this in such a way that people's donations would go through only if the goal is reached and the study is able to go forward (in the style of something like a kickstarter campaign)? I feel like many more people would be willing to participate that way. People are very motivated by specific goals, and this is a great one. But I think there will be much more reluctance if their money may not end up doing what they had hoped it would. I could see my friends, relatives, etc. being willing to put some funds forward to help if it was set up that way. I would also personally be willing to put a much higher amount towards it under that framework.
 
I Have donated a small amount today. My son who is 12 has donated the £25 he raised from a sponsored walk. I emailed a link to the PR story on this to a good (healthy) friend - she has donated £10 (out of a very low income) and has remailed to a larger group of her friends.

This is how to get the money together. But we must keep going. This is such an important campaign. Please, please, please get behind it, even if you cant afford to donate - ask someone who can.

I pray the study goes ahead and that the results continue in the same way as the smaller studies. Then i will be showing it to every doctor who thinks they can insult and abuse me.

All the best,
Justy.
 
I agree Justy we need to get behind it as much as we are able - every little helps. How fantastic if the total was reached?
 
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.