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Lessons from ME/CFS: Finding Meaning in the Suffering
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$$$ for WPI vote daily now in Vivint Round 2!

Discussion in 'Action Alerts and Advocacy' started by Sasha, Jun 14, 2011.

  1. WillowJ

    WillowJ Senior Member

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    yay! thank you for the link

    at 0:21:49, National ME/FM Action Network's name is displayed-- hard work paid off in returns of PR, even if no $$ won in this contest

    24:04 IACFS/ME International Association for Chronic Fatigue Syndrome & ME, name displayed

    31:59 Nightingale Research Foundation, name displayed
  2. eric_s

    eric_s Senior Member

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    Thanks for the link. What left a bit of a strange feeling was that they didn't say ME or CFS even once. They probably have thought long about that, but it's quite weird they couldn't really say what it's all about. It's the situation that's to blame, don't misunderstand me, but it somehow doesn't feel right.

    Good job everybody and let's do this again and again...
    WillowJ likes this.
  3. Sasha

    Sasha Fine, thank you

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    Fantastic! Almost didn't want to believe it until it was official.

    Well done everyone for all your hard work (and investigative efforts!).

    :thumbsup::thumbsup::thumbsup::thumbsup::thumbsup::thumbsup::thumbsup::thumbsup::thumbsup::thumbsup::victory:
  4. Morgaine

    Morgaine

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    eric, I thought that too. The illness that dare not speak its name...

    Really pleased for WPI, though.
  5. Battery Muncher

    Battery Muncher Senior Member

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    Get in! Great job everyone!
  6. Christopher

    Christopher Senior Member

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    Not surprised that them winning the contest doesnt generate a lick of interest by the powers here
  7. ePat

    ePat

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    What I don't understand is this:
    approx. 70.000 votes for the WPI, the contest ran for what ? 10 weeks ? That's 7000 votes per week and 1000 votes per day.
    So: where on earth are the supposed millions of ME sufferers ????????
  8. WillowJ

    WillowJ Senior Member

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    80-90% of those with ME are undiagnosed
    some, even of the 10-20% diagnosed, cannot use a computer at all (or cannot use a computer consistently)
    others might not be in a group where they would have heard
    others might be uncomfortable with the facebook format where you have to allow the application, let it access your friends list, and so forth

    we have done well! :victory: next time, perhaps better (maybe next time we can get two of our organizations winning)... we are learning, and building networks all the time! :Retro smile:
  9. ePat

    ePat

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    Posted the following in the facebook-group-thread at:
    http://forums.phoenixrising.me/show...draising)!-Info-in-Post-1&p=203750#post203750

    "Would there be any chance of an email group (unrelated to facebook) for notifications of contests ? I think that would be great for those who don't want to join the facebook-group but would still want to help out. There are people out there who find facebook confusing, a time-waster and annoying if it sends messages for every smiley a member ends up posting. Also, not everyone has the time or the impetus to browse forums like this one in search for contests. It would be a shame to lose the votes of these people who don't want to participate in discussions but are happy to do what they're told (click on a link and cast a vote). This might be especially true for friends or relatives. Thanks. "
  10. WillowJ

    WillowJ Senior Member

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    I don't know of something like that at this point, but I will look into it.

    Vivint and Chase were facebook contests; for those contests, it was not possible to participate without having a facebook, because the contest organizers (not us; the businesses who were giving away money) set them up to be dependent on facebook (it was good marketing for the businesses, but also marketing for the participating charities): you had to vote through facebook.

    The point of the facebook group is to collect all the contests (or at least all the big ones) in one place so one only has to look at a single spot to get notified of all the important contests. In other words, to save time and effort for everyone.

    And the facebook group will eventually send out emails (one will need to accept an invitation to an event for this) to notify when there are important things going on. One will also be able to sign up for events which will send out daily reminders for any daily voting events (like Vivint was).

    There are many things one can do to make facebook more manageable so one does not have to deal with posts from one's friends who play Mafia Wars and Farmtown and send quizzes. I was going to make a post about that and hadn't yet... I will post on the other thread about this.
  11. caledonia

    caledonia

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    This great info is buried at the bottom of this long thread. I wonder how many people have actually seen it.

    Why doesn't someone send a PM to Cort and ask him to write an article about the results of the Vivint contest and all the money we have raised this year for WPI? Someone said 200k - woo hoo! This would make a great positive article.

    We need to toot our horns a little more. Maybe this would get others who have been holding back willing to participate in future contests.

    ps. looks like I need to change my signature to "we won 100k from Vivint!"
  12. shannah

    shannah Senior Member

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    With the 'Count Me In' I think it's around $200,000 or slightly over for WPI, not to mention the other 'Causes' in FB I've seen that have been donated to but not included in these totals as well as private direct donations.

    We've also managed to help win $5,000. in gas for PANDORA. There's the Invest in ME contest going on right now for a share in 1,000 pounds that closes at the end of September.

    It seems to me also that I recently voted on FB for another ME/CFS cause for $50,000 but for the life of me can't remember the details right now.

    Not too shabby for a bunch of sick, bedbound people! Imagine what we could do with a higher profile!
  13. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Great job to all!

    GG
  14. glenp

    glenp "and this too shall pass"

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    Some including myself are happy that WPI won but wanted other ME groups to win also rather then the groups that are for other charities. I would rather have had three ME groups win rather then just the one

    glen
    Francelle likes this.
  15. frenchtulip

    frenchtulip Senior Member

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    Shannah, I've been figuring the total amount since ME groups have been involved in contests. PANDORA won $20,000 in Chase in 2010. In Chase 2011, WPI won $65,000 and CFIDS Assn. won $25,000. In Vivint, WPI won $100,000 + donations and matching amounts of $23,000+ (not sure how much came from Vivint). The National ME/FM Action Network had about $2,300 in donations and matching amounts, I think. The IACFS/ME had maybe $900 and Nightingale had maybe $400. Of the last three, I'm not sure how much Vivint supplied. And PANDORA won the $5,000 gift card. From these contests, including donations and matching Vivint funds, our community has realized over $240,000, I am pretty sure. For sick people, this is a very great accomplishment! I just wish we could have helped ME/FM win the Canadian Region.

    For those who live in the U.S. and certain other locations, like the Virgin Islands and Puerto Rico, the AARP contest is underway. You nominate yourself and tell about your volunteering experience in a 250-word essay. Judges choose several regional winners and from those winners, people will vote to choose an overall winner. Regional winners get $5,000 for their favorite charity and the overall winner gets an additional $10,000 for charity. Who knows what the judges will choose, but I am thinking we are a little different doing volunteer work from beds, wheelchairs, and so forth and might have a chance. I don't think residents of Canada are eligible, but be sure to check the rules. http://aarp.promo.eprize.com/createthegood/
    WillowJ likes this.
  16. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I hear you, I tried to get more votes for some org, once I thought WPI was safe, but not enough takers to make a difference unfortunately!

    GG

    PS Hopefully next time we can do even more, but considering our condition and various demands. Hopefully our Canadian friends can coalesce, and they can win more money next time!
  17. Nielk

    Nielk

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    this is exactly the reason why we need to have more people involved in these contests. The more votes we have to work with, the more organizations we can help. No one else is fighting for us. It's u to us to do whatever we possibly can because no doubt about it: IT'S ALL ABOUT THE MONEY!!
  18. eric_s

    eric_s Senior Member

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    Nice posts in this thread...

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