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MEandYou and All of Us: 90 Days of Stunning Achievement and a Look to the Future

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by Sasha


Dr Maria Gjerpe, founder of MEandYou

On 9 March, ME/CFS patient Dr Maria Gjerpe started a 90-day campaign to raise $1.2 million (£780,000, €920,000) to fund a confirmatory trial of the effects of immune drug Rituximab on the disease at Haukeland Hospital in Norway. Ninety days because that’s all she could confidently commit: she herself had gone from bedridden to completely well on Rituximab in a pilot study at the hospital but she knew that 80% of patients relapsed after several months.

As Maria worked 12-hour days without a break, the campaign rapidly went international and patients and supporters from all over the world piled on to make it happen. And we’ve never seen anything like it.

After 90 days, over 3,500 people from 20 countries have donated over $430,000 (£280,000 €330,000) in an unprecented torrent of money from the ME community and others whose attention and compassion were caught by the campaign. Response within Norway itself has been phenomenal. Everyone, from individuals such as Tyr who went on a drinks-can refund odyssey (see the video clip), to businesses such as Gantic AS who donated a valuable industrial elevator for auction, to politicians such as Prime Ministerial candidate Erna Solberg, joined in.


ME patient’s boyfriend Tyr captures the spirit of the campaign - click the image to start his video

Maria got media coverage not only in Norway but even in major German news magazine Der Spiegel; she talked about MEandYou during her health policy lectures to audiences of hundreds; she blogged, she Facebooked, she tweeted, she opened an online shop, she entered MEandYou in online contests – a record 8,000 supporters flattened the opposition to win $17,000 (£11,000, €13,000) in the recent Stormberg competition – she organised a demonstration outside Parliament; and when she handed over $230,000 (£150,000, €170,000) to delighted researchers Drs Fluge and Mella on TV in a bankvault, the bank and another charitable foundation handed over another $87,000 (£56,000, €66,000) between them.

By 5 June, as a two-day meeting started of Norway’s Medical Research Council to decide on the latest round of funding applications, including the Rituximab trial, fully a third of the trial’s funding had been raised by MEandYou. Maria was all over the Norwegian media saying that it was wrong that the burden of funding the trial was falling to patients, many of whom were donating from their benefits and savings, and that it was surely time for the government to step in and fully finance the study.

After an anxious wait, the good news came out – the Research Council had given a large grant to the trial. The amount hasn’t yet been confirmed, although it is known that it won’t be sufficient for full funding. But it is enough for Drs Fluge and Mella to begin the trial, recruiting patients from all over Norway who have been referred to the Haukeland Hospital. And the start of the Norwegian study isn't the only measure of success: no doubt emboldened by MEandYou’s achievement, UK charity Invest in ME is joining the necessary international effort to validate the Rituximab findings by starting a fund for a confirmatory trial in Britain.

Although Maria’s 90 days of active fundraising now ends and the research can begin, the rate at which the trial can progress will depend on how quickly the remaining money is raised. Maria has many pending applications to businesses and charities that might produce more cash but we can all continue to donate via Maria’s site as before. Payment can be made here by credit card, bank transfer or PayPal (scroll down for overseas payments), and Maria will continue to update her Facebook page with the new numbers.

This really has been a phenomenal campaign. Maria, with her upbeat attitude, made MEandYou fun and inspiring: something that people were excited to join in with. We owe her a tremendous debt of thanks. Her preferred way to receive thanks would be to donate more but you can also express your gratitude by signing this e-card, kindly set up by forum member Parvofighter.

I asked Maria what she was going to do now and I thought she’d say she was going to go on a cruise or do something nice for herself now that her 90-day marathon was over, but no. She has founded a corporation to work with patients, doctors and the healthcare system to provide technological tools to help exploit the health data starting to be gathered by people’s cellphones, among other innovations. "There is a huge gap to be filled in this area," she says, "and I will be one of those who will fill it – and thereby change the healthcare system inside out."

She says to her supporters, "Thank you so much for all the support and the trust that you have given me, people from all over the world. This has been a really touching ride for me. Thank you for believing. Thank you for joining me and for walking in the same direction. We made history. Be proud. I am. High Five!"

I dearly hope that Maria is one of those who don’t relapse after Rituximab and I’d like to thank her for the sacrifice that she has made of this precious window of good health to do something that has brought hope to so many patients.

Good health, Maria!


Related links

MEandYou website

MEandYou Facebook page

The Inventory of MEandYou: Maria looks back at her campaign

An introductory and an update article about MEandYou on Phoenix Rising

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Sasha, thank you for a marvellous article, and for initiating the thank-you card. I think this is article provides the kind of information that will be important in years to come. So many ME - and other disease - associations could learn from Maria's example of strategic positive influence, and global crowdsourcing to kick-start a desperately needed clinical trial.

What is it about Norwegians that enables them to see the big picture so well? It is really a mindset to emulate; thank you Norway, and thank you Maria!.

MATERIAL FOR AN ARTICLE? Something that struck me as ironic that would make wonderful fodder for an article, which I would particularly love to see in the UK (?Sonia Poulton?): Maria's campaign, and the Thank You cards to Maria and the sponsors of Open Medicine Institute research are simply brimming with optimism, hope, gratitude, and positivity, from ME patients and their loved ones from all around the world. Indeed, these examples convey the genuine and profound appreciation that ME patients show when they are truly and meaningfully helped. It's worth taking a few minutes to read these expressions of optimism - I felt a little "high" at the end!

When psychiatrists complain that ME patients are selfish and unappreciative, perhaps they should be pointing a finger to their ineffective "therapies", rather than to the ingrate ME community. For a cohort of supposedly depressed, threatening, medical narcissists, this positivity is quite remarkable, and I would say typical, in the face of meaningful support. And I daresay we will see much more of it as global ME biomedical research progress continues!

P.S. The Thank You card for Maria is still up for another week. You can sign it here: http://www.groupcard.com/c/zMGag9wWEjE Even if you've signed, it's worth going back to read the expressions of hope. Made MY day!
 
Sasha, thank you for a marvellous article, and for initiating the thank-you card. I think this is article provides the kind of information that will be important in years to come. So many ME - and other disease - associations could learn from Maria's example of strategic positive influence, and global crowdsourcing to kick-start a desperately needed clinical trial.

Thanks! My article just skims the surface of what Maria did - take a look at her 'Inventory'! She's also going to write a new blog piece, which she'll link to.

What is it about Norwegians that enables them to see the big picture so well? It is really a mindset to emulate; thank you Norway, and thank you Maria!.

When we're all better, let's all go on holiday to Norway! It sounds great!

MATERIAL FOR AN ARTICLE? Something that struck me as ironic that would make wonderful fodder for an article, which I would particularly love to see in the UK (?Sonia Poulton?): Maria's campaign, and the Thank You cards to Maria and the sponsors of Open Medicine Institute research are simply brimming with optimism, hope, gratitude, and positivity, from ME patients and their loved ones from all around the world. Indeed, these examples convey the genuine and profound appreciation that ME patients show when they are truly and meaningfully helped. It's worth taking a few minutes to read these expressions of optimism - I felt a little "high" at the end!

Sonia retweeted a MEandYou message, I believe, but maybe she didn't realise how relevant to the UK the campaign was, at the beginning. Something to think about there... :)
 
Awww! That's lovely! Some people formed a secret Facebook group to raise money for a holiday for Maria to thank her!

https://www.facebook.com/photo.php?....129283587230831.28348.125662110926312&type=1

She says:

I was surprised and touched! Thank you, everyone, that has contributed to money for a vacation for me Sigrid Danielsen has made a secret Facebook group where she fundraised money for my vacation, and also collects greetings, as a memory book. If you like, ask her to be added. Search the commentary field for her name

I'm really pleased someone did that! I was thinking what a shame it was that Maria had worked so hard for so long in this window of health and wasn't doing anything nice for herself.

What a brilliant idea! :thumbsup:
 
I wonder if many people realise that Norway has a population of 5 million, as opposed to the US's 314 million and the UK's 63 million. And look at the success of this campaign! I'd be exploding with pride if I were Norwegian.

I get the impression that Norwegians have a great community spirit and that that has helped but clearly, larger countries ought to be able to raise much more money! Now that Maria has set the standard, I hope we'll see a step-change in donations to all our research projects.

I bet I'm not the only one who will be going to Norway on holiday if I get better! :)
I think you are right, Norwegians have a very strong community spirit.

But also, this is very novel to us as a country. Except for the cancer cause, I can't remember any campaigns collecting money for research for a specific illness. We pay high taxes, and expect that the state will spend our money well for the greater good. Most of the time it works pretty well. ;-)

So except for donations made privately in special causes, this kind of "movement" to be created for medical research is new to us even in Norway.

I will welcome you Sasha to Oslo when we are better! :-D
 
I think you are right, Norwegians have a very strong community spirit.

But also, this is very novel to us as a country. Except for the cancer cause, I can't remember any campaigns collecting money for research for a specific illness. We pay high taxes, and expect that the state will spend our money well for the greater good. Most of the time it works pretty well. ;-)

So except for donations made privately in special causes, this kind of "movement" to be created for medical research is new to us even in Norway.


That's very interesting! Apparently France doesn't have any charity shops for the same reason - high taxes which people expect to be spent well - whereas the UK, with lower taxes, has loads.

I will welcome you Sasha to Oslo when we are better! :-D

Excellent! I'll bring you some fine English Marmite! :thumbsup:
 
Hehe...YES! It' s spelled "Tusen takk" :)

I am quite staggered at the thought of all the organisation and energy you have devoted to this cause. Never come across one before that has been quite so successful. You should feel great satisfaction in all that you have achieved and in how this community has come together in such a relatively short space of time. Quite stunning and overwhelming. I was very moved by you previous post. Thank you Maria :)
 
Sasha, thank you for a marvellous article, and for initiating the thank-you card. I think this is article provides the kind of information that will be important in years to come. So many ME - and other disease - associations could learn from Maria's example of strategic positive influence, and global crowdsourcing to kick-start a desperately needed clinical trial.

Thanks! My article just skims the surface of what Maria did - take a look at her 'Inventory'! She's also going to write a new blog piece, which she'll link to.

What is it about Norwegians that enables them to see the big picture so well? It is really a mindset to emulate; thank you Norway, and thank you Maria!.

When we're all better, let's all go on holiday to Norway! It sounds great!

MATERIAL FOR AN ARTICLE? Something that struck me as ironic that would make wonderful fodder for an article, which I would particularly love to see in the UK (?Sonia Poulton?): Maria's campaign, and the Thank You cards to Maria and the sponsors of Open Medicine Institute research are simply brimming with optimism, hope, gratitude, and positivity, from ME patients and their loved ones from all around the world. Indeed, these examples convey the genuine and profound appreciation that ME patients show when they are truly and meaningfully helped. It's worth taking a few minutes to read these expressions of optimism - I felt a little "high" at the end!

Sonia retweeted a MEandYou message, I believe, but maybe she didn't realise how relevant to the UK the campaign was, at the beginning. Something to think about there... :)
Great idea - healthy holiday in Norway! Watch out Norway... here we come! I already know of 2 things I wanna do in Norway:
1) Hang out with Espen Fadnes here: http://www.youtube.com/watch?v=3Cs-zZ0Qu5Y
2) Go skiing here: http://www.youtube.com/watch?v=MZchINzk43E
 
Hi Maria

Thanks for your amazing work, both the fundraising itself, and even more so for the huge impact it had on how ME is seen and supported. I'm sure the Research Council's decision to fund the Rituximab trial was heavily influenced by MEandYou.

Thanks too for your thoughtful comments on why MEandYou was so successful, particularly your emphasis on a positive message and getting support from outside the patient group:
...The money is actually not THE most important, and I say so because I tend to think in "long terms", and how to change the whole debate itself. If the scientist had got the funding the first time they applied, I do not think we would have seen the change in the climate, like I have seen in Norway the past weeks. And that is important for the years to come! Change in climate, means more interest, means better scientist, means findings, means funding etc etc.

...In MEandYou it was about dealing with the issue, more funding to research on ME, in a positive way, so that people wanted to listen to me, and didn't get pulled off by negative or offensive communication. It's quite human to prefer to listen to and act upon an active, positive message, than a negative one, right?...

Another factor I was planning was to get supporters OUTSIDE the patient group itself. In that way it was impossible to blame the patient group as "rebellious" or "agressive" and so on, because it was no longer about "the patient group", but about research on "a medical condition that could strike anyone. Me to". Therefor the name MEandYou ;-)
I think we can all learn a lot from that.

Sasha - thanks for a terrific article
 
Thanks too for your thoughtful comments on why MEandYou was so successful, particularly your emphasis on a positive message and getting support from outside the patient group:

I think we can all learn a lot from that.

Sasha - thanks for a terrific article

Thanks, Simon - and I absolutely agree, you've picked out some really important lessons there.
 
An interesting comment from Maria on her Facebook page today:

https://www.facebook.com/MEYOU.no/posts/207184649440724

Yohooo! Monday. This week I'm introducing you to how The Sporting Norway, namely all the teams in topp-fotball, has contributed to MEandYou and thereby support research on ME. What do you think about that?


I wonder how she managed that? To get spectacularly healthy sportspeople to not only understand that sick people aren't malingering but also give such generous support when one can so easily imagine it going the other way - great! Maria said that this recruitment of healthy people to the campaign was very important.
 
There are some MEandYou initiatives still running so Maria hasn't fully stepped away yet, just so that she can finish them off - for example, she has managed to persuade the whole Norwegian football Champions League to donate signed shirts for auction! Amazing!

This is on her Facebook page:

We are warming up before the auctions of signed t-shirts from the whole Norwegian Champions League by thanking Molde Footballclub for donating t-shirt to MEandYou that Siw picked up yesterday. Check this out!
 
Hey Sasha, are the Norway ME Association different from Me and You? I am guessing they must be. Only I saw this posted yesterday:

ME Association has collected half million

Together we have achieved a major milestone.

Norwegian ME Association's funds for biomedical research, around half a million dollars.
A big warm thank you to all who contribute!

Read more...

Be very interested to know how much the Rituximab study is now funded, and how much of a shortfall they still have :)
 
Hey Sasha, are the Norway ME Association different from Me and You? I am guessing they must be. Only I saw this posted yesterday:

ME Association has collected half million

Together we have achieved a major milestone.

Norwegian ME Association's funds for biomedical research, around half a million dollars.
A big warm thank you to all who contribute!

Read more..
Be very interested to know how much the Rituximab study is now funded, and how much of a shortfall they still have :)
Thanks for highlighting, Firestormm.

It looks like a bit of extra funding for Fluge and Mella, from the Norwegian ME Association.

500,000 Krone = $81,000 = £54,000