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

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
 
Back