1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

Very important!

Discussion in 'Action Alerts and Advocacy' started by Frank, Jun 15, 2010.

  1. Frank

    Frank Senior Member

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    By simply voting, P.A.N.D.O.R.A. can win up to $250 000 and Pandora can use it - they want to create WPI-like Neuroendocrineimmune Treatment/Research/Educational Center in New Jersey (and then in Florida). Watch the instructional video in full size by clicking on read more:

    PANDORA is in the top 200 and wins $20 000 at this point in time. (7-17)

    Simple steps
    1)Log-on to your facebook account
    2)Search for 'Chase Community giving(product/service)'
    3)Click on the 'Like' button
    4) You can go to the search charity box on the page and search for Patient alliance ... (you'll find P.A.N.D.O.R.A.)
    5)Click Let's get started to vote (green button); Give permission! (to the Chase application)
    6)Click vote
    7)You can vote up to the 13th of july (you have 20 votes in total to use for different orgs.)
  2. citybug

    citybug Senior Member

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    They are both displayed at http://www.chasegiving.tk/
    If you search on the application use Whittemore Peterson or Patient Alliance (no s on Patient) then scroll down to see their name. Vote top right, (Okay mistake not EVERY DAY , but you can remind others to vote every day). Thanks for setting it up. We can do it!
  3. Dolphin

    Dolphin Senior Member

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    Well done Frank. :Sign Good Job:

    (Obvious) People can add this to their favourites (in your browser) as a quick way to find it. It might also remind people.
  4. Frickly

    Frickly Senior Member

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    Done and Done! I clicked on the link on facebook provided by Pandora and WPI. It took about 10 seconds. I hope everyone does this.
  5. citybug

    citybug Senior Member

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    They have 77 votes, need a lot more!
  6. Frank

    Frank Senior Member

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    WPI is in 17th place, PANDORA on 53, common everyone!

    Today i will create a shorter video for the dutch community.
  7. Nina

    Nina Senior Member

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    I voted and asked all my FB friends to vote, too. I really hope we can do better this time!
  8. Dolphin

    Dolphin Senior Member

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    Anyone able to vote for day#2?

    When I go in now, there is no vote option?
  9. Frank

    Frank Senior Member

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    i think you have to wait 24 hours to vote again..
  10. Dolphin

    Dolphin Senior Member

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    Ok. That would suggest that the closer one does it to 24 hours later, the better e.g. if you wait 36 hours each time, you'd only get 2 votes in 3 days rather than 3.
  11. Frank

    Frank Senior Member

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    i'm not sure about it dolphin
  12. Dolphin

    Dolphin Senior Member

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    From Co-Cure:
  13. Frank

    Frank Senior Member

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    I know Dolphin big mistake of myself :(. If you're out of votes you can create a second facebook acount with another email-adres.
  14. Dolphin

    Dolphin Senior Member

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    I certainly won't hold it against you.
    And it's less work for everyone. :Retro smile:

    Now I suppose the task is to make sure people encourage others to vote. Lots of people have lots of Facebook friends.
  15. Frank

    Frank Senior Member

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    Bad news, WPI has been removed...
  16. citybug

    citybug Senior Member

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    Oh sorry, they must be too big. They said this month was oriented towards small organizations.

    Would you want to add the Vermont or NJ cfs organization to the article? Do you know if WPI entered themselves, or if someone else can for Pepsi Refresh next month? (For that we do vote every day).
  17. Frank

    Frank Senior Member

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    it's almost midnight over here, i'm disappointed, i'll work something out tommorow :(
  18. citybug

    citybug Senior Member

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    We need a patient support group for WPI with charitable status that would give the money to them.
  19. Dolphin

    Dolphin Senior Member

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  20. Dolphin

    Dolphin Senior Member

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    Iacfs/me=american association for chronic fatigue syndrome inc

    Another one is:

    http://apps.facebook.com/chasecommu...-association-for-chronic-fatigue-syndrome-inc

    IACFS/ME=AMERICAN ASSOCIATION FOR CHRONIC FATIGUE SYNDROME INC

    Patients could show their support for researchers and professionals in the area. They'd like to fund research also but have no money or not much, as far as I know.

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