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

March 21, 2013

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

{ 58 comments… read them below or add one }

Maria Gjerpe March 21, 2013 at 3:07 pm

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."

snowathlete March 21, 2013 at 5:07 pm

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.

Maria Gjerpe March 21, 2013 at 5:20 pm
snowathlete

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.

ggingues March 21, 2013 at 9:39 pm

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

GG

Maria Gjerpe March 22, 2013 at 3:22 am
ggingues

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/

:-)

Maria Gjerpe March 22, 2013 at 4:20 am

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

Sasha March 22, 2013 at 4:57 am
Maria Gjerpe

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.

SpecialK82 March 22, 2013 at 8:45 am

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.

Tally March 22, 2013 at 8:58 am

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.

Maria Gjerpe March 22, 2013 at 11:37 am
SpecialK82

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 :-)

Maria Gjerpe March 22, 2013 at 11:39 am
Tally

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.

Maria Gjerpe March 22, 2013 at 12:03 pm

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 )

Sparrow March 22, 2013 at 1:59 pm

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.

Sasha March 22, 2013 at 2:04 pm
Maria Gjerpe

12!
NOK 612 239
EUR 81 300
US$ 105 000

£69,000! :)

justy March 22, 2013 at 3:19 pm

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.

maryb March 22, 2013 at 3:32 pm

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?

Purple March 22, 2013 at 5:21 pm

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.

taniaaust1 March 22, 2013 at 5:56 pm

Thanks PR and Maria for this article. I cant think of anything more important right now.

snowathlete March 22, 2013 at 7:04 pm
justy

My son who is 12 has donated the £25 he raised from a sponsored walk.

Well done to your son Justy; what a star! You must be very proud!

wdb March 22, 2013 at 7:37 pm

What happens if the target isn't reached ?

Tuha March 22, 2013 at 7:52 pm

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.

Purple March 22, 2013 at 7:54 pm
wdb

What happens if the target isn't reached ?

This page has some answers: http://www.meyou.no/donate/what-will-happen-to-the-money-i-donate/

justy March 23, 2013 at 2:01 am
Purple

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.

Maria Gjerpe March 23, 2013 at 5:38 am

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. :-)

Svenja March 23, 2013 at 5:46 am

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 Gjerpe March 23, 2013 at 7:24 am

Yes!

Please translate whatever you find at our site or YouTube Channel into German!
That would be very much appreciated :)

https://www.youtube.com/user/140MEandYou

Chris March 23, 2013 at 11:05 am

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

ballard March 23, 2013 at 4:59 pm

I just made a donation. Best wishes for your efforts.:thumbsup:

Purple March 23, 2013 at 5:07 pm
justy

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 :)

maryb March 24, 2013 at 4:29 am

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.

Jacque March 25, 2013 at 4:34 pm

How lucky you are to be in the 2/3 who respond!!!

taniaaust1 March 25, 2013 at 7:42 pm
Purple

This page has some answers: http://www.meyou.no/donate/what-will-happen-to-the-money-i-donate/

That was very good to read what will happen to the money if enough isnt raised for this phase 3 trial. Good to know that that event has been well thought out and the money will still end up going towards good ME/CFS research..

Maria Gjerpe March 26, 2013 at 2:24 am

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/

Sasha March 26, 2013 at 1:10 pm

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!

Maria Gjerpe March 27, 2013 at 2:54 am

:-)

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

Sasha March 27, 2013 at 3:53 am
Maria Gjerpe

:)

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?

Maria Gjerpe March 30, 2013 at 1:00 pm
Sasha
Maria Gjerpe

:)

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?

Maria Gjerpe March 30, 2013 at 1:01 pm
Sasha March 30, 2013 at 1:15 pm
Maria Gjerpe

Today, at Der Spiegel about MEandYou:

http://www.spiegel.de/wissenschaft/…ie-per-crowdfunding-finanzieren-a-891721.html

Fantastic to get into such a high-profile publication – and they included a link to your website, which is very important.

Well done! :thumbsup:

Sasha March 30, 2013 at 2:21 pm

I see you're also here on a Spanish news site:

http://noticias-del-mundo.com/sindr…finanzas-farmaco-en-estudio-por-crowdfunding/

Sasha March 31, 2013 at 2:36 pm

You're on another German site here:

http://www.shortnews.de/id/1017944/…tudie-soll-per-crowdfunding-finanziert-werden

I don't know how big a site that is but it's interesting that they have picked up the story and that's probably because it was in Der Spiegel. It's very good that these news places outside Norway are picking it up – they're seeing it as a global story (which it is, of course).

Sasha April 1, 2013 at 8:40 am

I see Maria's campaign has just got 14 patients' worth of funding! That's $120,000 raised.

It's on her Facebook page: https://www.facebook.com/MEYOU.no

Wow! :thumbsup:

One of those 140 little purple hands turns red every time another patient gets funded. I like it!

Maria Gjerpe April 4, 2013 at 9:44 am

Great that you like the high-fives, Sasha!

Number 15 coming up! :-)

Lot of people ask me how to help in different ways.

Please, read how to donate, invite and spread the word:
http://www.meyou.no/how-can-i-help-spread-meandyou-across-the-world/

Sasha April 4, 2013 at 9:50 am

Just seen you've got some more media coverage in Norway:

http://www.adressa.no/nyheter/trondheim/article7339487.ece

Sasha April 5, 2013 at 10:54 am

I see we've got the 15th patient funded now! :thumbsup:

Sasha April 6, 2013 at 4:32 am

Article about Maria's fundraising campaign in Aftenbladet (big newspaper in Norway):

http://www.aftenbladet.no/nytte/liv…er-til-ME-forskning-3152619.html#.UV_4zqI3urm

Sasha April 12, 2013 at 6:50 am

Maria's campaign is still going strong – she's in another Norwegian newspaper today:

http://www.ba.no/nyheter/article6597076.ece

and she's raised enough funding for 17 patients – that's an amazing $150,000/£97,000/115,000 Euros.

Here's her donation page: http://www.meyou.no/this-is/donate-here/

Christine April 12, 2013 at 9:22 pm

Maria, we are so grateful for your bold, brave and selfless leadership and determination in starting the MEandYou Campaign!

To the M.E. community:
My husband and I donated because Jesus Christ cares about M.E. and you.

Using the above comment as a mission statement, we just launched a campaign called “Jesus Cares About M.E. and You” to assist Maria’s crowdfunding efforts. We are inviting Christians worldwide to join us in donating to MEandYou in Jesus’ name.

We are praying fervently for God to move the Science forward and bring answers to the M.E. community.

-Tom and Christine

Christine April 13, 2013 at 2:53 pm

A friend asked me to post this:

My wife and I made a donation to MEandYou in the name of Jesus Christ.
Gordon
Indiana, USA

Christine April 15, 2013 at 1:00 pm

Congratulations, Maria!
You just got your first public endorsement from a U.S. doctor for the MEandYou campaign.
Dr. Andreas Kogelnik from OMI in California on his Foundation's (OMF) Facebook page:
https://www.facebook.com/pages/Open-Medicine-Foundation/309364692501292?fref=ts

How amazing to see this spirit of teamwork from doctors on both sides of the Atlantic, for the benefit of M.E. patients!

Christine April 22, 2013 at 1:58 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 at 1:45 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 at 2:05 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 at 4:21 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 27, 2013 at 5:04 pm
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 29, 2013 at 5:20 pm

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 at 1:44 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 at 3:16 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.

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