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Power to the patients! Vote Dec 3-12 for a new Biobank for the Vancouver Clinic

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 1, 2012.

  1. Purple

    Purple Bundle of purpliness

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    Thank you, Kati. I fear this will put off potential voters who don't speak English and just follow instructions in other languages.

    The problem still seems to be persisting.
     
  2. Tuha

    Tuha Senior Member

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    We have 3,258 suporters but I think that they count also the supporters from the first round and if I remember correctly I think we started the second round already with around 2600 supporters so we got only 600 new ones. It´s sure that a lot of supporters vote just once becuase they are not motivated enough or they just forgot. Also a lot of supporters from the first round dont vote.

    There is also 1 way how to bring more daily votes. It´s ok if from 1 house 4-5 people vote - so I asked the passwords from my parents and close friends email adresses or facebook adresses and I am voting instead of them. So like this I am voting directly from my house and bringing 4-5 votes. Then I asked my other friends to vote for themselfs but I dont know how many of them do it. I try to encourage them every day and if I see someone log in on facebook I do a small chat with him and I ask him to vote - he always does - he cannot refuse easily like when you only send an email :)
     
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Mark, Kina, etc
    That is a very nice poster that Kati created. Could it be put on the forum main page, with Kati‘s permission of course? I realize that it is banner shaped, but it might fit to the right of “Phoenix Rising ME / CFS Forums”.

    Tuha, Do you know that if they notice that too many people are voting from your computer, they may disqualify your votes?
     
  4. Sasha

    Sasha Fine, thank you

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    I've just sorted by 'most votes' and filtered by 'large' but the ranks and votes don't agree (i.e. if I sorted by the numbers of votes I'd get a different ranking than the ones provided).

    Anybody know what I've done wrong there, and how to find out what our actual position is?

    Anyway, just did this morning's vote! :)
     
  5. Tuha

    Tuha Senior Member

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    Tuha, Do you know that if they notice that too many people are voting from your computer, they may disqualify your votes?[/quote]

    It´s normal that from 1 computer vote more people if you live in the same house. of course you cannot exagerate and bring 50 votes from 1 computer. 4-5 votes are Ok because it´s just normal that this number of people live in the same house. I also vote from 2 computers because we have 2 at home - so IP adresses should be different
     
  6. Tuha

    Tuha Senior Member

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    Sasha, we are currently in the 13th positions. Sometimes you have to click directly on the organisations to see the right numbers or you have to refresh the site but then it shows wrong numbers for other organisations - they have some technical problems there. Today I will do another statistic like yeasterday but I will do it a bit later because yeasterday I did it in the time when americans were sleeping and in this time our position is a bit better. But the competition will finish in time when americans are awake so this is more relevant.
     
    Sasha likes this.
  7. Sasha

    Sasha Fine, thank you

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    Thanks, Tuha - it's a pity they haven't got that quite sorted.
     
  8. Hope123

    Hope123 Senior Member

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    This seems pretty obvious and maybe it's already been done but have people contacted the two Canadian orgs, FM-CFS Canada and the ME/FM Action Network to send out an e-blast to their members?

    Also, I don't keep up with all the CFIDS Association newsletters but have they featured this contest at all or can they send out a letter to their members? I don't know what to expect their response to be since they are no longer considered a patient advocacy group but this contest is about supporting a research center as well.

    I just sent out a reminder e-mail to the group I'm part of and reminded people to vote daily and not just once.
     
  9. snowathlete

    snowathlete

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    we have 4711 votes now.
    its a good idea to facebook/tweet about it to friends and family. would make a big difference if we all did that and got just one or two extra votes each.
     
  10. Aileen

    Aileen Senior Member

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    If these people are in the same house as you, fine. If not, you shouldn't be doing this. Proxy voting as it is called is not allowed. I wish it were.
     
  11. Aileen

    Aileen Senior Member

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    ME/FM Action Network sent out a message a few days prior and you could sign up for daily reminders. They said in their email that it was the only message they'd be sending though.
    Thank you!
     
  12. Sasha

    Sasha Fine, thank you

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    I've just done a new signature, now that the Ampligen thing is over - please feel free to copy.

    The wording on the Aviva banner and the title of the project may play a little bit against getting support - they risk giving the impression that it's about equipment for a local ('community') treatment clinic that would benefit relatively few people, and it doesn't even mention ME/CFS, fibro or Lyme. It also looks like it's probably Facebook, which a lot of people won't touch.

    It's not, of course, and I think if we can have signatures that push that it's research, we'll all benefit, you don't need facebook, it's for ME/fibro/Lyme, you can vote from any country, that could help.
     
    Aileen likes this.
  13. Tuha

    Tuha Senior Member

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    Aileen, my parents live with me but even if they woudnt I dont see anything bad there. they would do it for me. just they are older they dont use computer too much and it´s easier this way. even if it´s not allowed i dont see there any violating of the "correct" behiving.
    actually the idea of these contests is really stupid. I vote for our organisation and I dont know anything about the others, if we wouldnt be in such desperate situation i would never participate in these contests - so i wouldnt moralise too much about these contests
     
  14. Aileen

    Aileen Senior Member

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    If people are voting for others who are NOT living with them, eg, a relative who does not have a computer, this is called "proxy voting". Aviva has made it very clear to us that this is not allowed and votes will be deducted if this is suspected. If a project gets caught doing a lot of this, who knows what Aviva would do. Throw them out of the competition? Believe me, I wish we could do this. I'd be doing it. I have a couple of elderly relatives who would be happy to help if only they had a computer. :(

    As for people living in the same house, it seems silly to make the person sit at the computer and move the mouse as you sit beside them telling them every move to make!
     
  15. Aileen

    Aileen Senior Member

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    The Aviva leaderboard is finally working again!! We are still in 14th place. 164 votes behind #13. The 3 projects we have to pass to get to the top 10 are all playgrounds! Little local projects - we can do this!!
     
  16. Tuha

    Tuha Senior Member

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    I checked how the organisations grow up. after 33 hours - we are in the 14 th place but from the first 15 organisations be did the smallest move. We need at least 500 votes more. Here are the results:

    1. Undercurrent Youth Centre – 8785 (+3249)
    2. Riehl skate park – 8449 (+2771)
    3. Une vraie cour d'école pour ados! – 8384 (+2921)
    4. Fighting for Healthy, Affordable Food in North End Halifax - 7852 (+2732)
    5. Stay Strong Nick Roma 7074 (+2612)

    6. Nouveau gymnase pour notre club de gymnastique Les Hirondelles – 6905 (+2423)
    7. Exoskeleton for Trevor Greene, Canadian Veteran – 6878 (+2099)
    8. Harder-4-Carter: The Carter Antila Memorial SkatePark – 6655 (+2445)
    9. Projet Paradis / Paradis Project – 5804 (+2312)
    10. Non-profit Companion Animal Hospital & Shelter – 5741 (+1865)

    11. Castle Park's "Play for ALL", universally accessible playground – 5719 (+1952)
    12. Un préau pour L'École des Enfants-de-la-Terre – 5681 (+2124)
    13. The Power of Play - A Barrier Free Playground – 5398 (+2069)
    14. Medical equipment for a new chronic diseases clinic in Vancouver – 5222 (+1702)
    15. Vera M. Welsh & community of Lac La Biche needs a new playground 4840 (+1903)

    16. Sensory Therapy Room for kids at Lutherwood 4595 (+1570)
    17. Building Change -A New Shelter for the RCSPCA 4393 (+1442)
    18. Sports for all 4328 (+1426)
    19. Valley Park Go Green Cricket Field Project - Let There Be Lights 4164 (+1281)
    20. Volunteering to Independence Program "the Katimavik VIP program" 4162 (+1444)

    It´s possible to find 500 votes more but everyone has to try to find someone and also we should try to find some other strategies so all suggestions are welcome
     
  17. Tuha

    Tuha Senior Member

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    Is someone in touch with Robert Miller? He did some ME/CFS campaigns following by many ME/CFS patients. I think he has a mailing list of a lot of patients. Maybe it´s worth to contact him and to ask him to send the poster about aviva contest with 2-3 encouraging sentences from him to the patients on the mailing list. I would do it allone but I think I saw somewhere his appologies that he doesnt answer a lot to the people who he doesnt know because he gets a lot of messages. So maybe we could reach him easier if someone is in tuch with him. So please, if you know him and you would like to contact him with this subject just let me know - if there wont be anyone within next 2-3 hours I will do it by myself
     
  18. Hope123

    Hope123 Senior Member

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    That's too bad that ME/FM Action Network only sent out one message and that's it. I can understand that they don't want to bother their members but this is a rare opportunity for a clinic in their country. If I were Canadian, I would bug their management to send out a second message updating people on the status of the Clinic and asking them to consider voting again. A group I'm part of also did something similar a while back and sending out the second message did increase our votes quite a bit towards the end of the contest. We ended up winning.

    Also, a tact I have not tried but might help to encourage people to vote is to remind them that since only 10-20% with ME/CFS actually have been diagnosed, their ONE vote represents that of 8-9 people who haven't been diagnosed but are suffering from this as well. Those 8-9 people, who might have voted if they knew this was what they had, can't vote because they're still in the dark about this. In other words, ONE vote for ME/CFS is more than one vote ---- it potentially represents 8-9 votes. I've always thought this was a major obstacle in why we have a hard time winning these contests -- a lot of people don't know they have this.
     
  19. GcMAF Australia

    GcMAF Australia Senior Member

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    [quote="Sasha,
    What did you do in the war? ;).[/quote]
    i fought in the trenches
    i fought on the benches
    i fought on the beaches
    i fought in the bleaches
    so this disease we quenches
     
  20. waiting

    waiting Senior Member

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    Done 5574.
     
    Kati likes this.

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