This is a page for the press. We hope to add more translations later, as we get contributions from supporters of MEandYou.
You will find press releases/information in different languages in the drop-down menu.
Usually journalists ask me, Dr. Maria Gjerpe founder and chairman of the board, these questions:
What happens with the money, if you don’t fundraise enough to finance the trial?
This is what happend to the money if we do not fundraise enough money to start this trial:
I have decided to not use a ready-made crowdfunding this fare from different reasons:
1. I think it is best to start the engagement as close as possible to the people I want to engage. I have a huge network after debating ME, healthcare, Health 2.0, equal cooperation between patients and doctors etc for years through my blog www.mariasmetode.no, from my bed and sofa. My main issue regarding ME has been these: Right treatment for the right patients. The only way to make this possible is to do research and seek knowledge through vigorous design on studies, such as RCT-s, and to have strict inclusion criteria, such as the Canadien criteria.
When people give money to someone to handle them on their behalf, they have to trust the one that they give money to. After being so visible for years, people have seen me in different phases and realize that I am the same and will be here for a while. When someone trust me, they tell their friend to trust me too. If I was to have “MEandYou” on a crowdfunding platform, I felt that it was a filter between me and “people”.
2. This is “down to top” and it is a lot about empowering people to be as good ambassadors as they can and wish. It´s all about people and what they can do together. Those with little money and those with a lot. They can contribute in different ways, and when I started, I did not know what kind of tools they needed to be empowered as ambassadors. This is Tech mixed with social media, given people the tools te be empowered and be the change themselves. I am not MEandYou. I made the path. All that contribute is MEandYou. I say “walk with us”.
Different tools that I and contributers have made is:
– Things they can put on their site to invite people to donate and the posters are for the shops http://www.meyou.no/this-is/downloads/
– This is a letter they can send to their community to explain: http://www.meyou.no/this-is/share-info-about-us/
– This is a letter to friends. It is the healthy who shall help the sick: http://www.meyou.no/walk-with-us/
– There will be a PPT which everyone can download to their own computer, bring to a company, and ask for support. It will be finish in a couple of days – it makes it easy for those that do not know how to explain.
– Some said that they did not have money, but they make handcrafts or services. Therefore we are soon launching a netshop where supporters can donate things instead of money.
…and so on. I really like other to take a look on what I am doing. People might engage in other themes as well. Instead of telling them what to do, I ask them what they need to do to do what they like to do.
3. But actually, the most important part is that instead of crowdfundingplattforms working for me, I decided that I would work for the contributors -for free. I do not want a third part to take money from the contributors. I want contributors to be absolutely sure that everything that possible can, will go to science and research on ME. Contributions vary from 20 NKR to 100 000. I do not think that those who gave 20 nkr has a single dime to spare. Out of respect for patients finical situation I wanted to give them everything that I got. This is for MEandYou, right now – I am sure that for other crowdfunding-projects there will be others solutions that will be best.
What will be your role in the study after the fundraising?
If the study will be fully financed, I will have no roll after the fundraising. If its not fully financed, I wrote in the section “What will happen to your money” that I, in the end, together with the scientist and the board, will find a strong an reliable biomedical study on ME to finance.
Don’t you fear that this study could be a bit biased when it is started under the idea “Rituximab helped me so much, I wan’t to prove that it helps others”?
The answer is no, from several reasons:
1. First of all: The design and protocol is all ready made, long before I decided that I was to crowdfund it. I, and the other contributors, has nothing to say when it comes to how this study is going to look like or the outcome of it. Nobody else than the scientist will, and, as I said, they all ready did. What we in MEandYou do, is to support the study that they do not have fully financed yet.
2. This study is all ready partly financed by the Norwegian Goverment with money at the State Budget. It is a political wish that it is funded.
3. The Research Council of Norway found the design of the study strong and qualified when they judged it, but did not have the money for funding it.
– MEandYou financially support what the scientist all ready set out to do, what the politicians support with some funding, and what the council find as a worthy and strong scientific study.
MEandYou do not wish to wait any longer to see what happens. ME-patients suffering, almost always out of work and we need to get help as soon as possible. I, myself is healthy NOW, maybe not in 5 months, and its now I can do this.
Nevertheless, if this had been a different situation, I would have other second thought. See what we are discussing when it comes to this issue, if you like:
Maria Gjerpe — Chairman of the Board, MEandYou Foundation
Bent Høie (Cons.) — MP, Leader of Standing Committee on Health and Social Affairs.
Arvid Hallén — Chief Executive Officer, The Research Council of Norway
You will also find privat pictures available for the press in articles related to our press releases. You are welcome to use them on the condition that you, as a journalist either send a link to the article MEandYouFund(at)gmail.com and note it as “Article about MEanYou”.
The pictures are on Maria Gjerpes blog, “MariasMetode.
This is our information video, with subtitles in English: