1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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Chase Community Giving Contest for Small Non-profits-Nov 8 to 22-$3M in Prize Money

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Nov 7, 2011.

  1. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Five Orgs Stay put - two others move up. - Everybody basically stayed put except for Mass CFIDS and New Jersey which zoomed up about 15 places! Congratulations Mass and New Jersey!

    CFSKnowledge Center - #20
    AACFS (IACFS/ME) - #34
    Wisconsin - #53
    RMCFA - #56
    Mass CFIDS - #60
    New Jersey - #64
    Enterovirus Foundation - #100
     
    frenchtulip likes this.
  2. Frank

    Frank Senior Member

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    [video=youtube;SEvejcdN5Hk]http://www.youtube.com/watch?v=SEvejcdN5Hk[/video]
     
    Dolphin likes this.
  3. Dolphin

    Dolphin Senior Member

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    7 (non-ME/CFS) charities seem to have been excluded from CCG

    Looking at leaderboard, it appears 7 (non-ME/CFS) charities may have been excluded from CCG.
     
  4. SpecialK82

    SpecialK82 Senior Member

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    ?? not sure what this means....
     
  5. Dolphin

    Dolphin Senior Member

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    If you look at the top 100, it includes up to 107. There is no group with 2 or 4 beside it, for example.
     
  6. SpecialK82

    SpecialK82 Senior Member

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    Both the WPI and CAA started promoting this contest yesterday on facebook so hoping we get a bump.

    Good to see some cooperation amongst groups.
     
    Dolphin likes this.
  7. taniaaust1

    taniaaust1

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    Sth Australia
    Great news to hear.
     
  8. SpecialK82

    SpecialK82 Senior Member

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    Hmm...interesting. I wonder what happened?

    Also wonder if the "Friendship Circle" groups are going to zoom to the top as we approach the finishline? Hopefully they have learned their lesson.
     
  9. taniaaust1

    taniaaust1

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    Sth Australia
    CFSKnowledge Center - #20 .. down at 23
    AACFS (IACFS/ME) - #34 .... up at 31
    Wisconsin - #53 .. down at 61
    RMCFA - #56 .. down at 65
    Mass CFIDS - #60 up heaps, now at 47
    New Jersey - #64 down at 72
    Enterovirus Foundation - #100 currently out of running for its $25,000, now at 105 .... 11 votes behind to be back in top 100.
     
  10. cfidsurfer

    cfidsurfer

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    I think the mecfs groups will be loosing ground in the next couple of days so it is important now more than ever to try to get votes. Over all, the turnout for mecfs votes has been less than impressive. Considering the amount of money at stake, I'm really not sure why more people are not voting:confused:?????
     
    Dolphin likes this.
  11. Tuha

    Tuha Senior Member

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    I also think that we will have big problems to keep our organisations in the top 100. I think its up to the patients who already voted to ask their friends and family because other patients simply dont react and are not motivated to do it. I dont understand it. If I remember correctly WPI got 10 000 votes in the last Chase contest. we did the same campaign, it was posted everywhere.....no wonder that after 30 years we are nowhere with this kind of patients support.

    I was successfull with getting votes from my friends. If I am online on facebook and another friend is online - I do small chat with him and I ask him to vote - its also good if he has a problem you can help him and it takes just a short time. None refused to do it when I asked.
     
  12. Hope123

    Hope123 Senior Member

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    Yes, although I am always very thankful for the people who do vote, I've also wondered why we only get less than a thousand or so votes in Chase every time if I remember right. For this contest, we should remind people that you do not need to be a US citizen, be a customer of Chase bank, or live in the US even to vote. I'm not sure how well or if the contest has been promoted broadly enough even among English-speaking ME/CFS groups outside the US.

    People should keep voting though -- PANDORA stayed in on list by 25 votes two years ago so EVERY vote counts.
     
  13. Dolphin

    Dolphin Senior Member

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    Well done, Tuha. One advantage of the previous Chase contests esp. the last one where the WPI got over 9,000 votes is that lots of people know how to vote. Although it's not that particularly hard to vote, it is certainly less complicated the second time.
     
  14. Dolphin

    Dolphin Senior Member

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    From the UK lists I'm on, I don't think it is being promoted that much (except by me and a few others) - I'm not sure if many or even any of the UK national or local groups are supporting it.*

    ME/CFS Australia (South Australia) and the Irish ME/CFS Association are two groups I know that have mentioned it in e-mails to members.

    *There are lots of them so this is just a broad, sweeping statement that hasn't been really researched!
     
  15. Tuha

    Tuha Senior Member

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    yes and we are still missing more than 8000 votes from the previous Chase contest, So the patients thinks that WPI is the only place in all over the world where we can find an answer - its the only explication which I have
     
  16. Dolphin

    Dolphin Senior Member

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    And I'm not sure how many of them believe that now!
     
  17. Dolphin

    Dolphin Senior Member

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    I haven't seen many tweets from people outside the US mentioning it (but then I don't follow that many people - but one does see re-tweets).

    People on PR could make some sort of signature about it - e.g. simply linking to Cort's article.
     
  18. Dolphin

    Dolphin Senior Member

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    FB event has been set up

    An event for the Chase Community Giving, Nov 2011 for the nine groups in the running: http://www.facebook.com/events/229141813819873/

    People don't always look at all the messages on their Facebook friends' walls so you can make (almost) sure they'll know about it by going to the event and clicking "select guests to invite" and click your Facebook friends - if they have already received an invite, they'll be shaded so can't be invited again - this ensures each person will only get one invite.

    One can also add a message with the invite (and send different invites with different messages to different people). Also one can add E-mail addresses if somebody isn't your Facebook friend.
     
    mezombie likes this.
  19. Dolphin

    Dolphin Senior Member

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    I think the most important statistic to watch is 100th position and the votes associated with it (101st might be slightly more interesting but we can't see that).
    Latest leaderboard: 603 (+44)
    12 hrs previous: 559 (+39)
    12 hrs previous: 520

    I expect this figure will increase as time goes on (i.e. it could go for example +39, +44, +49, +54, etc. - doubt it will be that exact of course) and certainly at the end I expect big jumps.
    The groups we are supporting need to be getting more than these figures in each period to ensure they are not risking losing out.

    Here are the latest increases:
    CFSKNOWLEDGECENTER INC: 1039 (+24)
    INTERNATIONAL ASSOCIATION FOR CHRONIC FATIGUE SYNDROME/ME: 1026 (+35)
    MASSACHUSETTS CFIDS/ME & FM ASSOCIATION: 833 (-5) (they presumably were docked marks/had duplicates or something)
    ROCKY MOUNTAIN CFS/ME AND FM ASSOCIATION: 765 (+44)
    WI MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME, ASSN, INC.: 761 (+18)
    NJCFSA: 708 (+22)
    ENTEROVIRUS FOUNDATION INC: 678 (+20)
    CFOG, INC: 365 (+20)
    CONNECTICUT-CHRONIC FATIGUE AND IMMUNE DYSFNCTN SYNDROME ASSOC INC: 302 (+15).

    So apart from ROCKY MOUNTAIN CFS/ME AND FM ASSOCIATION who also increased by 44, all the others didn't get 44.
    This is worrying.


    I don't have time to do the figures but I don't get the impression that there is any sort of trend that the ME/CFS groups are increasing with time. They of course don't have to increase with time once they get the votes at some stage. Basically I'm concerned people could be too relaxed as all 6/7 have been in the top 100 for a while. I think there is a good chance only 2 will win prizes and possibly none unless there is more of an effort. It wouldn't take that much more to get groups over the line.
     
  20. Dolphin

    Dolphin Senior Member

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    100TH =656 (+53) (so +39, +44, +53 ...)

    #31 CFSKNOWLEDGECENTER INC Wellington, FL 1,063 (+24)

    #34 INTERNATIONAL ASSOCIATION FOR CHRONIC FATIGUE SYNDROME/ME Chicago, IL 1,055 (+29)

    #54 MASSACHUSETTS CFIDS/ME & FM ASSOCIATION Quincy, MA 862 (+29)

    #62 ROCKY MOUNTAIN CFS/ME AND FM ASSOCIATION Denver, CO 786 (+19)

    #63 WI MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME, ASSN, INC. Sun Prairie, WI 784 (+23)

    #78 NJCFSA 727 (+19)

    #86 ENTEROVIRUS FOUNDATION INC San Francisco, CA 705 (+27)

    #160 CFOG, INC Kennesaw, GA 379 (+14)

    #181 CONNECTICUT-CHRONIC FATIGUE AND IMMUNE DYSFNCTN SYNDROME ASSOC INC Milford, CT 311 (+9)

    So none of the groups were close to getting the 53 votes that 100th position jumped by in those 12 hours! :(

    53 votes isn't an impossible amount to get - I know groups have got that amount and more in previous time periods.
     

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