Hello everybody – online and in the world outside where the wind is blowing. These days I am entering my last days with MEandYou. Come June 6th I, Maria, will have to retreat. So the activity you have seen so far will no longer be as continuous as till now.
(Norsk versjon kan du lese her: Opptelling av MEandYou)
I will however make a post later and tell you a little about what will happen after June 6th.
The summary under, of some of the things that have happen in MEandYou until now, has been made with help from Ingrid, who has a ME-sick sister. Thank you so much, Ingrid!
COUNTDOWN TO THE LAUNCH!
MEandYou gets 333 friends on Facebook. A lucky number! How often does the patients themselves make a directly initiative to finance other patients to a research trial project? Has this ever been done before – ever?
Filming of members of the Norwegian Parliament who supports the project is done. Åsmund is hired for the occasion. This is important!
ErnaSolberg, Prime Minister Candidate in Norway and Laila Davøy, Vice President of Parliament show their support through High Five!
The information film was short and right on target about what MEandYou is and it was translated to different languages. You can find the film on MEandYous official YouTube channel
Strong words from Maria Gjerpe – the cornerstone behind MEandYou:
- “When anyone asks me; Why do you use all your time, now that you are healthy, on this, instead of making loads of money and securing your own career? It is just lying there waiting for you.
Then I answer; Because I can. Because I know what’s possible. Because I know how many is suffering. Because I can’t watch while the trial at Haukeland stops because they don’t have enough money to continue.” Posted on February 23rd.
Patient number 1 is financed on February 26th.
A test run of the SMS-service (only valid in Norway) gave 15 500 NOK. Fabulous!
Patient number 2 is financed on March 5th.
Support from Helsedirektoratet, the Norwegian Health Department:
- “Helsedirektoratet agrees that there is a great need for more research in this field but we don’t have access to the resources”, Nordmo says to Dagens Medisin (Todays Medicine) in a conversation about the situation of ME.
- “It is important to stop the bickering in the scientific community. The only thing that can move a mountain is steady research and knowledge”, is the response from Maria Gjerpe.
LAUNCHING AND THE FIRST 10 DAYS!
LAUNCHING March 6th!
Promo video released – High five from Maria.
– “It isn’t faith that moves mountains. Knowledge does. I have taken the initiative to collect 7.000.000 NOK in 90 days to finance research on ME. Join me!” Maria Gjerpe writes in her blog, Marias Metode (English version in the bottom) and the fundraising has officially started!
It is made posters that can be downloaded from www.meyou.no and be posted wherever there is an opportunity. Everybody can be invited to join MEandYou. Everybody counts. The last infusion of the medicine and handover of the already raised money on March 11th.
The hospital, Haukeland, writes about the fundraiser on their website.
1000 people support the crowd funding on March 12th. 7 million NOK, 140 patients to Haukeland, 90 days to do it!
Support from Uillustrert Vitenskap (Unillustrated Science) – only in Norwegian, use Google Translate!
2 articles in BA (Norwegian newspaper) – only in Norwegian, use Google Translate!
Interview in Bergens Tidende (Norwegian newspaper) – only in Norwegian, use Google Translate!
The work with the web shop has started on March 14th.
The Student Newspaper in Trondheim, Under Dusken (Under the Tassel) writes about the case in their article “ME-research on a low budget”
March 15th: Just passed 500.000,00 NOK (84 927 USD) to finance the research at Haukeland.
This is equal to 10 patients. In 10 days we have financed 10 patients. Will we be the first in the world to crowd fund clinical trial?
More and more people supports the private crowd funding – or “folkedugnad” as we call this project in Norwegian.
Patient and sociologist Cathrine Eide Westerby take the challenge given by Maria and start a relay race!
Here is important support from Espen Andersen, Institute for strategy and logistics at BI – only in Norwegian, use Google Translate!
Doctor Pernille Nylehn supports MEandYou – only in Norwegian, use Google Translate!
Bent Høie, representative in Parliament characterizes MEandYou as a “fantastic project” and the CEO of the Norwegian research council applauds what’s being done in an interview on the Norwegian radio program Ekko NRK – only in Norwegian, use Google Translate on the written part!
20 DAYS INTO THE PROJECT!
After a while Maria gets help from Solveig, to do the accounting, Kari Anne and Christoffer makes the web shop possible, and other people offers technical solutions to make the work easier.
Greetings from a humbled Maria Gjerpe March 20th (excerpt):
- “You know what’s really, really great for me as a founder of MEandYou to see? How people reach out, do what they can, with what they got. A lot of volunteers have contacted me the last few weeks. You who shares, you who are volunteers, you who pay, you who cheers, you who invite friends, you who help me make the tool, so that you who want to join, are empowered. I feel that I´m a part of something that is huge, and much bigger than myself. This is no longer “I”. This is “WE”. It´s fantastic. I am so proud of you all. Thank you for giving me, and you, this experience!”
Launching of the web shop to further raise money for the clinical trial at Haukeland on March 21st is possible due to many people willing to donate things to sell. Let the creativity blossom! (only for Norwegian addresses)
Strong words from the former Vice President of Hydro, Lars Th. Narvestad. This is the reason for MEandYou. This is an excerpt from the letter – you can read it in full in our blog post http://www.meyou.no/letter-from-lars-th-narvestad-former-vice-president-of-hydro/
- “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):
Maria writes an article in Phoenix Rising, a great international forum for ME/CFS on March 23rd. Sasha becomes a an important contributor.
Two great representatives for the MEandYou’ers, that is people supporting MEandYou: Siw, Susannes mom, is interviewed in Sunnmørsposten (Norwegian newspaper) – only in Norwegian, use Google Translate and Sondre, in Trondheim, is interviewed in Adressa (Norwegian newspaper) – only in Norwegian, use Google Translate . High Five, folks!
1500 people supporting the cause on March 23rd!
There’s 74 days left of the fundraiser.
Interview with Erna Solberg, Candidate for Prime Minister in Norway. She supports MEandYou – English subtitles, 2 minutes long.
It’s great seeing that there is no borders in research. Support is coming from all over the world, Japan, Africa, Canada – and we can see that the hope and wishes for the trial is without borders. People are donating everything from 20 NOK (3,5 USD) to 100 000 NOK ( 17 105 USD).
Cort Johnsen supports MEandYou on his blog
30 DAYS INTO THE PROJECT – 60 TO GO!
Der Spiegel, one of the largest and most important magazines in Europe, has responded to the press releases that has been sent and publishes a greater article, with an interview, about MEandYou
Llewellyn King is one of the most prominent media figures in the US. Outspoken and one who directly advocates for ME. He writes on April 5th:
- “One million CFS sufferers in the United States and millions more elsewhere will continue to suffer until society gets behind the moral imperative of researching a cure. The immediate needs are to comfort the sick, educate the doctors and shame the government.”
This is exactly what MEandYou are doing! We have joined to finance clinical trials. We know that knowledge is the answer and solution to get out of this mud pit of ignorance and lack of treatment.
Ola Didrik Saugstad, Pediatric research institute at the University in Oslo, has supported the project since day 1 and has the following statement:
40 DAYS INTO THE PROJECT – 50 DAYS TO GO!
16 patients financed on April 9th! That means 16 ME-sick people are ready for the trial at Haukeland hospital. This is all about the money!
Åsmund is great making smashing tools for the graphic design and has made “countup” hands with Maria.
Support from Laila Davøy, Vice President of Parliament in Norway
50 DAYS INTO THE PROJECT – 40 DAYS TO GO!
A great day for the ME community – important international and public support from the US to MEandYou from Open Medicine Institute on April 16th.
18 patients financed on April 18th!
Yes it is all about the money! http://www.meyou.no/paypal/
Great interview with Maria Gjerpe in Hegnar Kvinner (Hegnar Women) about MEandYou on April 17th – only in Norwegian, use Google Translate
NRK Sogn og Fjordane with an article about support to MEandYou by chainsaw-carving artistery– only in New Norwegian, use Google Translate
MILESTONE! 1 MILLION NOK = 20 patients on April 22nd. 2000 supporters. This is AMAZING!
Yes – it’s all about the money!
In Norway “Min Sak-stafett” (My cause relay) is created. This is a way to get local politicians involved and aware of the project.
Have you forgotten why we do this?
To use English subtitles click/activate the “CC” icon on the video bar.
Ever wondered how much money is spent on research on ME? Here is an illustration that might shock you. It also underline why MEandYou are so important!
The web shop and auction site is up and running on April 25th. QXL is an important partner. (only in Norwegian, use Google Translate)
60 DAYS INTO THE PROJECT – 30 TO GO!
Through voting on Facebook we just received 25.000 NOK from Danske Bank Norge (Danish Bank Norway). This is important support to the work of MEandYou! Thank you, all!
Thanks to Kavlifondet and Sparebank 1 SR-Bank we can now finance 36(!) ME patients.
Yes it’s all about the money! Those two alone donated half a million NOK to MEandYou!
Maria, with help from Hanne, starts the month of May by making approximately 50 handwritten letters to the wealthier amongst us.
Maybe some of them made donations to our account?
Greetings from Maria Gjerpe on the Facebook wall:
- “Good morning! Science and knowledge is the future.
I want you to remember that these contributions are opportunities, they are hope – and they are necessary to get on with science.
Thank you to everyone that has given a large or lesser contribution in one way or another.”
A great article in Nye Meninger (New Opinions) – way too many people can associate with what’s written here. Only in Norwegian, use Google Translate
Tyr, who has a ME-sick sweetheart, brought the hard rock with him into MEandYou when he made his own movie about how he collected bottles – in Norway you get a refund on most bottles. Check it out! Fun and inspiring to watch!
You might like to see the interview yourself?
It’s been 60 days since the launch.
I write a post about what I do in MEandYou and call it “propounding an admission of failure” Is it right that sick people, their relatives and friends should be the ones to finance a deprioritized research project for a clinical trial? It’s not about finding a better treatment. It’s about finding a treatment at all.
Another great article about MEandYou from Phoenix Rising on May 6th written by Sasha: MEandYou and Rituximab: Dr Maria Gjerpe’s Fundraising Marathon Update
I get help from volunteer Hans and arrange Sheets and Stories in front of Stortinget (the Norwegian Parliament) on May 13th. A representative from ME-foreningen (the ME Association), Unge Duer and professor Ola Didrik Saugstad is invited to say a few words alongside me.
Aftenposten (Norwegian newspaper) is on the spot and makes an article – only in Norwegian, use Google Translate
– “Here lays Lars (49) 22 hrs a day! He has progressive ME and has been ill for 30 years. How long are the doctors allowed to thwart the the truth?”
Maria is sad, appalled and angry while she posts pictures from the event. 22 sheets from sick people. Strong messages.
May 15th – another milestone:
We have now passed the amazing 2 million NOK (339 403 USD) mark raised through Facebook and the web during 70 days from campaign start! Beat that!
This is the same amount of money that the Health Minister gave to the scientists at Haukeland over the state budget in the fall of 2011.
On Saturday May 25th we received unexpected support from this weeks most profiled TV-face (in Norway): Hans-Olav Lahlum. Hans-Olav wishes to donate the whole amount he has left after taxes to MEandYou and research on ME. VG (Norwegian newspaper) made an article. We are all smiling back at you, Hans-Olav!
In Indianapolis a whole church community is gathering around the sick father Tom, his wife, Christin, and their two sons, Austin and Andrew. A garage sale and small stands for donations are made. In Australia I get aware of David, and his wife, Tracy, who collects money his way. He has arranged Birthday for ME and all of his friends make donations to MEandYou. In Norway, Ole, that has a ME-sick son, wish money to MEandYou for his birthday. And gets it. The post is called “A gift is coming to you”
Overall a whole lot of different nationalities support MEandYou, as seen in the statistics on the Facebook page
Now, there’s only 10 days left.
Through MEandYou, I have done everything in my power to raise as much as possible during 90 days.
After 80 days we have got 2 116 000 NOK (359 089 USD).
This equals 42 places financed!
That’s nothing short of FANTASTIC.
10 days left.
There’s lot to do.
I’m looking forward to show you High Five hands on the Facebook wall from many different politicians supporting research on ME and star publishing the post on wednesday 29yh.
This is about sick people who are in great need of help and treatment. And this makes us gladly walk the extra mile. Right?
Today and a few days forward we can win 100 000 NOK or $17 000. It´s very easy, actually. One click at this link:
– and vote once for MEandYou and you are giving away a lot of money for free! Thank you.
Want to make a donation, large or small, click here and you will find all the information you need.