1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Results In For Chase Giving

Discussion in 'Action Alerts and Advocacy' started by shannah, Jul 13, 2010.

  1. shannah

    shannah Senior Member

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    Pandora wins $20 k in chase!!!

    Looks like Pandora came in at 162 so will receive $20,000.

    Yeah to all the hard work and efforts of those who pushed so hard for it!!!
    (Sorry cna't remember the names.)
  2. Esther12

    Esther12 Senior Member

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    162?

    We did way more work than was needed! My 3 votes were utterly unnecessary.

    Still, thanks for letting us know, and congratulations to everyone who managed to get the ball rolling on this. It was a stupid way to give out money, but at least we got some of it!
  3. Lynn

    Lynn Senior Member

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    Esther 12 you are being modest. With all of the posting on other sites you did, you probably were responsible for getting that extra 90 votes that we needed to stay in the top 200!

    Lynn
  4. Sasha

    Sasha Fine, thank you

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    Fanastic! I still have no clue about whether the votes I tried to do just ended up splattered across cyberspace somewhere but I'm glad I tried. Great that we could raise $20,000 from our sofas!:D
  5. Sing

    Sing Senior Member

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    Good News!

    Sing
  6. Esther12

    Esther12 Senior Member

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    Hey - good point. Pandora owe me a cut. Or at least a cure. They'd better not spend it all on posh biscuits for their staff or something.
  7. Hope123

    Hope123 Senior Member

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    OK, this thread needs a more exciting title like "CFS Patients get $20K for Charity!" or "PANDORA wins $20K!" to get more attention.

    Thank you to everyone who voted! It was tight at the end there but you pulled through! The last charity (#200) had 1547 votes; PANDORA had 1571. So a mere 24 votes separated PANDORA from being washed out of the competition!
    I was too tired to put together a good e-mail so my cousin put one together and got my extended family and their social circles (whom I don't even know) to vote.

    I think this really deserves attention so that those who participated can see they made a difference even if they are lying down in their PJs in bed and those who didn't participate realize that it's important to do so when you can.
  8. Sasha

    Sasha Fine, thank you

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    That's a good idea - I thought we had lost when I saw the current title!
  9. bakercape

    bakercape Senior Member

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    Cape Cod. Mass
    you know

    I think it's awesome that PANDORA got like 1500 votes and won a 20000 dollar grant.
    That being said I find it really frustrating that there are so many people with CFS/ME, LYme, Fibro and GWS and only 1500 something votes could be gotten. Look at some of the groups ahead of Pandora. It's ridiculous they got more votes. AND the Harry Potter alliance wins. Ugh.
    We as a community are large enough to get way more votes and get multiple cfs groups in the winnings. All that had to happen was everyone that voted for pandora also used there other 19 votes for CFS charities and we could have raked in multiples of 20,000. Don't people realize they don't have to stop at voting for 1 CFS charity? I just don't get how there are 4000 plus members of the CFIDS Association on Facebook and we can only muster 1500 votes for 1 CFS org.
    I think what happens is like 40 or 50 people get most of the votes through asking for help. Where is everybody?
    Sorry for the rant but I feel like we need to do more to help ourselves and a point and click on a computer seems within the capacity of many of the millions of us worldwide. Next contest I hope we can do better. I know PANDORA is going to be on the PEPSI REfresh Express. Hopefully we can help them win that contest!
  10. Tuha

    Tuha Senior Member

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    bakercape, i have to agree with you. I am really glad that we could get one organisation to the top 200. but we have to see also the other things. maybe someone can say that we just won and why this critic but only with the critic we can push the things farther. If we count that every patient brought in average 5 votes (and I think it was even more but lets be a bit optimistic) then there was only around 300 cfs patients who voted. i know that there was quit a big campaign (facebook pages, many cfs internet sites, mailingslist,...) and so to get only 300 people - its really nothing.

    Now we could critic the others and to use some bad words but I ask more myself where is the reason for it and how we can improve it for the next time. I think the voting was not so difficult - my english is not good but after 5 minutes I could understand the princip, the problem has to be somewhere else. Can you understand it? i think this question is really important for our next activities. if we will not be little bit more activ (and to be more activ it often means just to spend maybe 5 minutes a day with activity like voting,...), our situation will stay bad like now. We have to start to understand that even if there are some people like Mikovitc, Silverman,...who want to help us they cannot do everything and there has to come the help from our side. the healthy people have other problems.

    i think I will start a new thread about this
  11. Hope123

    Hope123 Senior Member

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    Yeah, I understand your frustration. I like animals too but it's extraordinary that a foundation for bears got $100K and over 5,000 votes -- I guess we're not warm and fuzzy enough!

    I think aside from poor health, a lot of people are apathetic -- they don't think that their vote will make a difference when in fact, it did in this very, very close race! That needs to be emphasized. PR did a superb job of promoting PANDORA for this; if every member of PR had voted, we would have garnered over 2,00 votes alone.

    For the future, I think PANDORA could do a better job of registering themselves -- I'm sure some people tried to vote, couldn't fine 'PANDORA' and gave up. Also, I think people are more familiar with the CAA and WPI and less familiar with PANDORA despite PANDORA's excellent advocacy record. (WPI did try to help PANDORA by urging people to vote.)
  12. shannah

    shannah Senior Member

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    You're absolutely right! I am so terribly ill it is more than I can to do to post when & what I can. I see my number of posts almost matches my biological age. Anyone care to tell me if there is a simple way to change this title?
  13. Hope123

    Hope123 Senior Member

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    Shannah, I can't change the title, only mods can so I'm starting another thread to link to here. Mods can merge threads.
  14. Lynn

    Lynn Senior Member

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    Hi Shannah, I believe you can change your post by clicking edit post. You may have to then press the Go Advanced button to get access to the title. You just then have to type in the new title.

    Lynn
  15. Lynn

    Lynn Senior Member

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    I think most of us do not think of ourselves as advocates. That is pretty much where all of the information about the Chase contest appeared.

    In the last days of the contest I wrote a blog (my husband nearly fainted when he found that out) talking about the vote because I thought we needed more people in the loop than were reading the Advocacy section.

    I also wrote one post to tie the vote to XMRV research because I know people are reading that section for sure. I guess it is really about marketing.

    Also, I think the Facebook thing threw off a lot of people and it was a complicated contest with the Gift Votes. I know when I first saw the thing about permission to give Chase access to all of my information on Facebook, I stopped dead in my tracks. I felt a little guilty asking people to vote because of that. But I did.

    I think I probably got an extra thirty votes in the last couple of days. I got motivated. The question is, how do we motivate others. Hopefully the Pepsi contest will just be a website that you click a button.

    Lynn
  16. shannah

    shannah Senior Member

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    Thanks - directions were right on for changing the title Lynn!
  17. shannah

    shannah Senior Member

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    Whoops - I guess it only changes the title in the body of the message and not the whole thread.
  18. frenchtulip

    frenchtulip Senior Member

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    Pepsi Refresh

    In the Pepsi Refresh contest, I would like to see if PANDORA could get the support of the Alzheimer's Association (about 50,000 on Facebook) and Fibromyalgia and Autism groups on Facebook. The National Fibromyalgia Association did post a blurb, which was very helpful. I posted several times on large sites that could benefit from PANDORA's NEI Center, but I think it has much more influence if it comes from staff members at the associations. And it would be wonderful if other associations would post reminders about the contest deadline, as the CFIDS Association did.

    The Patient Alliance for NeuroEndocrineImmune Disorders for Research and Advocacy is a great, unifying name. But in a contest, those interested in Alzheimer's or some of the other nei illnesses probably wouldn't think to search for NeuroEndocrineImmune. So for this contest, the name was a bit of a problem, I think.

    But it is super that PANDORA won!!! I love the concept of the NEI Center!!!
  19. citybug

    citybug Senior Member

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    Hurray! Pandora won!
    I think the blog about joining facebook really made a difference.
    It was tough. I worked hard but people I was sure would vote didn't because of giving permission.
    I was very worried that Pandora wouldn't get it after everyone's hard work, so I'm relieved.
    It's good practice for us, to know how to get something out there. Maybe it will lead to more links between groups. We need to keep getting the word about xmrv out to patients who aren't on here.
    I'm sure Pandora can really use the money, and we helped raise it. It's as if we each gave a few hundred dollars or thousands.
  20. shiso

    shiso Senior Member

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    Yay for a great result!! Thanks and congratulations to everyone who participated in this event.

    It IS as is if we each raised a part of the $20K, without costing ourselves or the friends and strangers we reached out to who cared enough to vote a dime. Opportunities like this (especially for a ME/CFS organization) are rare and I think a lot of us mobilized beyond our usual comfort zones because we realized that. Compared to the approach of stretching our or our friends' budgets to give $5 or $50 or $100 of their own money (which is absolutely critical too but painstaking and slow to add up), $20K of someone else's money by spending a few minutes online (when we know many patients regularly spend hours on message boards and forums like this one) was a no-brainer to me.

    Oddly, I think I feel more relieved and a little anticlimactic than affirmatively happy right now, even though I'm very grateful for the result, because it was so close and we could have easily lost. I don't seem to be alone in having this reaction. I am also scratching my head at why so little participation from the community, even though I "get"/logically comprehend why some of our non-afflicted friends didn't vote (I too had friends who I was sure would vote but didn't).

    But this thread is for celebrating the result, so again, congrats to everyone! :victory:

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