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Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
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MEandYou and All of Us: 90 Days of Stunning Achievement and a Look to the Future

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 12, 2013.

  1. parvofighter

    parvofighter Senior Member

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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!
    Svenja, Simon, Maria Gjerpe and 2 others like this.
  2. Sasha

    Sasha Fine, thank you

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    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.

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

    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... :)
  3. Sasha

    Sasha Fine, thank you

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    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:
    Maria Gjerpe likes this.
  4. serendipitycat

    serendipitycat

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    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
  5. Sasha

    Sasha Fine, thank you

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    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.

    Excellent! I'll bring you some fine English Marmite! :thumbsup:
    Maria Gjerpe likes this.
  6. Firestormm

    Firestormm Content Team Lead

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    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 :)
    Maria Gjerpe and Sasha like this.
  7. snowathlete

    snowathlete

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    You realize that is going to increase the population of the country significantly? 2-5 times as much...wont that affect the rotation of the earth or something?
  8. Nico

    Nico Senior Member

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    Tusen Takk....!!!
    Maria Gjerpe likes this.
  9. Sasha

    Sasha Fine, thank you

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    Maria Gjerpe likes this.
  10. parvofighter

    parvofighter Senior Member

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    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
    Sasha likes this.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Amazing! I am so happy at the fundraising success including the funding from the Norwegian government!! Thank you so much Dr. Gjerpe and everyone else who donated and helped!!
    Sasha likes this.
  12. Simon

    Simon

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    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:
    I think we can all learn a lot from that.

    Sasha - thanks for a terrific article
    Blue, Svenja and Bob like this.
  13. Sasha

    Sasha Fine, thank you

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    Thanks, Simon - and I absolutely agree, you've picked out some really important lessons there.
    Simon likes this.
  14. Sasha

    Sasha Fine, thank you

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    Oh, wow! Just watched that one. Best invention ever! I bet you anything that's in the next Bond movie.
  15. Sasha

    Sasha Fine, thank you

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    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.
    Valentijn likes this.
  16. Sasha

    Sasha Fine, thank you

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    Svenja likes this.
  17. Sasha

    Sasha Fine, thank you

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    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!

    Svenja and Bob like this.
  18. Sasha

    Sasha Fine, thank you

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    Svenja and Bob like this.
  19. Firestormm

    Firestormm Content Team Lead

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    Hey Sasha, are the Norway ME Association different from Me and You? I am guessing they must be. Only I saw this posted yesterday:

    Be very interested to know how much the Rituximab study is now funded, and how much of a shortfall they still have :)
  20. Bob

    Bob

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    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
    Svenja likes this.

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