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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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Comments

Maria is travelling to Haukeland this evening to give Drs Fluge and Mella the latest wheelbarrow of cash! Here's her latest message on Facebook:

I’m off to Haukeland with
53! ME-patients financed for research on Haukeland Hospital to seek for treatment and mechanisms.

The scientist at Haukeland need more money then they were able to apply for and got. Most of the 10-millions are going to pay for medicins and they appreciate very much funding through MEandYou. Keep donating if you can! I´m transferring the money directly.

Use http://www.meyou.no/donate-doner/

Donate. Like. Share. Invite friends. Lets do it together.
 
We are all very, very grateful for Maria's dedication to this cause. If someone could pull this off, it was she.
In terms of money, the results is fantastic. In terms of positive and constructive press coverage, even more so. Maria has gathered the support of politicians, academics, health authorities, business leaders all over the country and beyond. The image of ME-patients and the knowledge spread through this campaign is impossible to put a price on.
 
In terms of money, the results is fantastic. In terms of positive and constructive press coverage, even more so. Maria has gathered the support of politicians, academics, health authorities, business leaders all over the country and beyond. The image of ME-patients and the knowledge spread through this campaign is impossible to put a price on.
I can only press the 'Like' button once but I think this is an exceptionally important point. Like x 1000!

:thumbsup: :thumbsup: :thumbsup: :thumbsup: :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 am so touched to read this article. Thank you for your very nice words, Sasha, and to you who has commented - and the support you have all given me and that you wanted to come along. Means a lot to me.

I would like to share some of the thoughts with you.

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.

When I work, I always thing "system-wise" if I want to change something. And I will!

How can I change the system from within? It must always be by changing how people tend to think. It's always about individuals.

In MEandYou it was about dealing with the issue, more funding to research on ME, in a positiv 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? At least, that is how I prefere it.

It was also about just walk on the path I wanted to walk on, never look back - and expect others to follow.

I knew that it was also about getting support in such a scale (Here: enough money and "likers"), so that it became visible to those who decides the money-matters.

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 ;-)

As you see: another way to make MEandYou very visible. It became loud and clear that is also about friends and relatives - and supporters with empathy.

And then - The message had to be easy to understand, easy to adapt, and in one, clear direction, with visible and like-able, graphical elements. And never, never do anything else but to stick to the well-planned strategy.

(Now, while I am writing this, I think that I'll rather make a blogpost out of it, and post the link for those who wants to read how I planned and what I was thinking when I was working with MEandYou.

Is that ok?)

High Five from Maria,
reporting from Haukeland Hospital, ready for tomorrow morning with a check on almost 2.7 milloner kroner! :)
 
I was delighted to do the article, Maria - thank you again for everything you've done.

What a fascinating post! The rest of us need to learn from what you've done and I'll be very interested to read the rest of it on your blog.

2.7 million kroner! :balloons:
 
Let’s all learn Norwegian. I know 'tusen takk' - which I *hope* means 'thank you'.
(I thought there were meant to be two 's' - tussen takk - but Google Translate informs me that 'tussen' means 'goblin'.)
 
Let’s all learn Norwegian. I know 'tusen takk' - which I *hope* means 'thank you'.
(I thought there were meant to be two 's' - tussen takk - but Google Translate informs me that 'tussen' means 'goblin'.)

Even goblins can be grateful...
 
(Now, while I am writing this, I think that I'll rather make a blogpost out of it, and post the link for those who wants to read how I planned and what I was thinking when I was working with MEandYou.

Is that ok?)
Absolutely - great idea and great post. Some really valuable insights into effective campaigning. Your point about positive messages working better than negative messages is absolutely crucial in my opinion.
 
Dr Maria Gjerpe thank you million times over. I don't know how I would handle being sick with ME without having hope and something to look forwards to.

I'm proud that I managed to put Croatia on that list :)
 
Let’s all learn Norwegian. I know 'tusen takk' - which I *hope* means 'thank you'.
(I thought there were meant to be two 's' - tussen takk - but Google Translate informs me that 'tussen' means 'goblin'.)
Hehe...YES! It' s spelled "Tusen takk" :)
 
AMAZING!!!!! :thumbsup:
WONDERFUL!!!!!:thumbsup::thumbsup:
SPECTACULAR!!!!!:thumbsup::thumbsup::thumbsup:

Thank you so much for all your hard work Maria.

Thank you Sasha for the excellent article.
 
Maria is travelling to Haukeland this evening to give Drs Fluge and Mella the latest wheelbarrow of cash!
Heh.

That always sounds better than a bank cheque...

Reminds me of Happy Gilmore and his giant novelty cheques.

As for Maria, you are a real hope for many of us. :)