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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. Sasha

    Sasha Fine, thank you

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    Thanks for monitoring these figures, Dolphin - it's good to know the daily increase for the key groups.
  2. Dolphin

    Dolphin Senior Member

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    Thanks Sasha. BTW, there was a typo in what I wrote for the National ME/FM Action Network - maybe you could edit the bit where you reply to me - they got 97 not 71.
  3. Sasha

    Sasha Fine, thank you

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    That's a good point for us to remember - a lot of us had those signatures saying "WPI is safe, please vote for these others" with their page links because WPI was streets ahead in Round 1 from very early on (and only needed to be in the top 20 to qualify for Round 2). And yet votes continued to pour in for them. We have to remember that we on Phoenix Rising are not remotely in control of this. Despite our efforts to find out, we still have no clue how many people here on PR are voting (although we know that some have very successfully got a bunch of voters so their contribution is far greater than their individual vote). I suspect we're a worthwhile but not majority fraction of the WPI juggernaut.
  4. Sasha

    Sasha Fine, thank you

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    It just occured to me to Google on "Vivint WPI" filtering by "past month" to get an idea of what sort of coverage the contest is getting and I was happy to see that there are calls to support WPI in Vivint in languages I can't even recognise! A lot of people all over the world are not just voting but actively putting the word out and I can even see my own message here and there (ciao a tutti, CFS Italia!).

    I also just got a kind email confirmation from Denmark that they're already pushing Vivint on their Facebook page but will pass on the reminder.

    Don't forget, if anyone would like to copy my text or adapt it for themselves to use to send on to others, help yourselves. It's well worth doing - my message isn't Shakespeare or anything (especially after it's been auto-translated) but people on the receiving end are being kind about it and willing to post it.
  5. Sasha

    Sasha Fine, thank you

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    Thanks - done!
  6. Aileen

    Aileen Senior Member

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  7. Aileen

    Aileen Senior Member

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    This is a fair question. I hope I can think straight enough to get you to see the answer is no.

    The founder of the National ME/FM Action Network, is pushing herself far beyond what she should in order to both get this conference ready and finance it. She has been serving both Canada and the rest of the world for 20 years with this organization and before that with Nightingale. Nat'l ME/FM Action Network has gotten by with very little funding but has accomplished a great deal. Publishing newsletters, organizing awareness days, lobbying govt, spearheading the Canadian Criteria, getting ME and FM recognized in Canada's parliament, getting medical codes for both illnesses in the province of Ontario, assisting with successful court cases. The list goes on. She helps anyone who asks as much as she is able. Because of all she has done for us, she was given a prestigious national award, very difficult to get, called the Governor General's Meritorious Service Medal, Civil Division which is given in recognition of achievements bringing benefit or honour to Canada.

    How are we now repaying her at a time when she is putting her health on the line to put on a very expensive 4 day INTERNATIONAL conference and at the same time trying to raise the funds to pay for it? By supporting a foreign charity started by multi-millionaires with multi-millionaire friends that has been in existance for approx. 1 year, has already received $65,000 in a similar contest and which has managed to alienate and anger half the medical and scientific population we have on OUR side. How would you feel if you were her? Somehow I don't think the word winner comes to mind. It sure doesn't to mine. The nicest words I can come up with are betrayed and hurt - especially by the Canadians who are not voting for Canada. And if the kitty is bare at that charity, who do you think is going to step in when something needs doing? No one. Give it some thought.

    Here is a question for everyone else. Since those of you aren't Canadian do not seem to understand what I'm saying when I'm talking about when I say it matters that the charities are from different countries, explain this to me. Why was WPI deemed to be the "important" charity to support. Since they already won money in the Chase contest, why not decide to put all your support behind the National ME/FM Action Network? After all, you are all claiming that the one and only reason is so that someone wins and the vote is not split. So why did you not decide to throw your support to Canada? With its smaller population it would likely have taken less votes to win and with the entire world behind us should have been doable.
  8. Tuha

    Tuha Senior Member

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    Aileen, I was thinking about the problem of using 1 computer for more people. At home I have 2 computers and my neighbor has 3 in his appartment so I mannage my 7 votes with 5 different computers - I think its Ok. Its normal that you have more votes from 1 computer especially if you live with you family and friends.

    We tried several times to ask the people why they dont vote - you will never get an answer because the people who dont vote they dont answer. Maybe sometimes you get an angry answer that your critic is not good because the people are tired and so on but then you read the posts from the same people and you see that they worked a bit in the garden, they are able to write some posts on the forum for the hours.... What I found out that a lot of people dont like facebook and its impossible to convice them to have it - last year I had some strong discussion with some of them and you would never believe what kind of "excuse" they have to dont have it - I proposed them some solutions but they always found a new excuse and on the end I just saw that they are too hard head to have it - then I ask myself what is more important - to be hard head or try to support some activities in our community.
    I think the only way how to improve this situation is to start to try in each organisation/ forum to talk about pasivity of the patients and to try to encourage them to join the activities.
    Aileen I really think that people dont care about the nationality of the organisation. We live in global word so if a help will come from U.S or Canada - they really dont care. I think WPI has a bit special status now in our community because of XMRV finding. The research is extremely expensive so these 65 000 USD is just a small help (sure for a lot of organisations it would be a good help). So I think its difficult to convice the people to vote for another organisation. But I am sure there would be a lot of people who would follow the community and if enough people would decide to vote for your organisation - they would follow.
    the problem is that this discussion should already start before the second round. now everything already started, there was all the publicity made,....

    But I can understand that its discouraging for you. I would like to find much more patients for voting - so then we could easily vote for both organisations. How I already said, the main problem which I see here and in all adovcacy effort is really poor patients support. 200 -300 patients from all over the world is really nothing.
    I just feel that we are nowhere because of this but this is maybe for another discussion.
  9. Sasha

    Sasha Fine, thank you

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    Just did today's daily vote.

    Hi Aileen - it's clear you feel very strongly about the Canada/not Canada issue. In your first post on this thread you referred to "us Canadians". I don't see you as "you Canadians", I see us all as "us people with ME/CFS" and that is my strong sense of what other people are saying on this thread. The work that NM/FAM does clearly benefits people with ME/CFS all over the world, no question. No argument here from anybody that if the maths allowed, we'd be pushing for those votes we can influence to go to them. As I explained about our past discussion, we already agreed weeks ago to do that if the numbers stack up.

    You're focusing on your relative value for the two organisations in trying to persuade us to change our behaviour but what we're trying to say to you is that this is about the numbers. We will vote for a charity that can win. WPI leads by less than NM/FAM lags in its region. NM/FAM can't take a share of that vote big enough to win Canada without costing WPI the Pacific. WPI has a huge hardcore of support that we can't influence (we tried in Round 1) so even if we wanted to switch enough voters over to NM/FAM, we can't. It's not in our power. What will help NM/FAM is additional voters entering the contest specifically to support NM/FAM. If they do, non-hardcore WPI supporters might well feel able to switch without destroying WPI's chances.

    I'm willing to be persuaded to switch my vote if, and only if, you can explain to me how, with the arguments I make about the numbers in the above paragraph, NM/FAM can win. That's the argument we need to hear from you to persuade us and we're ready to listen to it - we've had that discussion ourselves and everybody agrees that all the ME/CFS charities have great merit and we'll do what's pragmatic. This is about the art of the possible.

    Please bear in mind that the numbers argument is heavily influenced by the total ME/CFS vote. We need more voters! Are you doing anything to target the Canadian organisations that I mentioned? Perhaps there is a also a list of subnational support groups and charities that you can get access to.
  10. Aileen

    Aileen Senior Member

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    I think I'm beginning to see the real problem here. I am viewing this as actually two separate competitions running concurrently. One for U.S. charities where the winner (we know it will be American, not Canadian) will win $250,000 and the 4 U.S. region winners get $100,000. The other is for Canadian charities who are competing for $100,000.

    As a Canadian, I am only interested in "my" part of the competition as I can only vote once per day that means I can only be part of "one" competition, so to speak. This directly affects what happens within my country - how long it takes to pay for the conference, what kind of funding will be available in the future for other projects in Canada, how much extra work people within the Canadian organization will or will not have to do etc.

    I would expect the Americans to focus on "their" competition, meaning WPI. I would hope that those from other countries would help both teams compete out of fairness and respect for both. I hope that better explains where I'm coming from.
  11. Dolphin

    Dolphin Senior Member

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    Well said, Sasha. Although in my case, I'm not interested in rhetoric - as I said, I'm not going to consider switching until I see 400+ people voting for the National ME/FM Action Network (or else the votes for the leading group collapses in which case the figure would be lower).

    As we have said, in Round 1 we had signatures calling for votes for other groups and in round 1, I only voted for the WPI I think maybe one or two days before seeing they looked like they were going to be safe (but checking each day before voting).

    In Chase Community Giving last year I voted for PANDORA. It's not a case of WPI and nobody else for me but it is for a lot of other people (who wouldn't switch in Round 1); so basically the National ME/FM Action Network supporters need to get other voters and show they have a chance, and then come back to us "floating voters".
  12. Aileen

    Aileen Senior Member

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    I hate Facebook too. Definitely don't trust it. I wouldn't be on it if it weren't for competitions like this. However, I'm on it under an alias, who has her own birthdate (it's ok, she's over 13 too!) and has no information posted that is not required. Everything that is there is set to be viewed only by her. She has 1 friend only. That was necessary due to the dreaded "gift votes" Chase forced on us last year. I spent so many hours trying to explain those horrid things! It's not as though you have to put your life on there just because you set up a page. I just use mine for this and to view some things I otherwise wouldn't be able to.

    As far as the "special standing" of WPI, I really don't understand that. While the final results are not completely in it is looking like XMRV is definitely nothing more than a lab contaminant. So they have found nothing. We are no further ahead. They however have damaged their reputation by the way have sniped publicly at other researchers and scientists who have criticized them. They are probably blacklisted from most if not all major medical and scientific journals because of their refusal to retract their paper when requested. They are going to have a very difficult time trying to get anything else published. Half the doctors and researchers who are on our side are angry with them over the way they have handled things. And they've only been around for a year. This is not exactly a glowing start. And this is peoples great hope?

    It's never a good idea to put too many eggs in one basket. That is the first problem with putting WPI on a pedestal which seems to be happening, at least in some quarters. Secondly, you need to look at the history of this illness. We have been through false starts like XMRV now appears to be more times than I can count (I've been around for a quarter century of this). Thirdly, these people are good at making enemies and burning bridges. We need people who can do the opposite. I don't doubt they are caring, committed researchers but there are some big problems at WPI that need to be corrected. They don't appear to hear anything negative however and that is worrisome.

    And yet, there is more than one fundraising campaign going at the moment to raise money for them and only them. There are other fine researchers doing excellent biological research who need funding as well. How many of you are supporting the UK researchers? I do on an almost daily basis, as I have to use a search engine a lot. I have for quite a few years now. How many of you even know what I'm referring to? I'll bet a lot of you don't.

    Research isn't everything either. Patient organizations of various kinds are just as important. Conferences are crucial; someone has to host them. Political activism is a critical element too. Researchers can't be doing all of that. It wasn't a research group that was responsible for the Canadian Criteria for example, or for getting the NEI Center bill through the New Jersey legislature. It is just as necessary to fundraise for these types of organizations as the research ones. Some of you seem to be looking through a straw I'm afraid. You can't take care of your right arm and ignore the rest of your body and expect it to function. This is what we as a community seem to be trying to do at the moment.
  13. Sasha

    Sasha Fine, thank you

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    I think we're in danger of getting off-topic on this thread and diverting our limited energy from the important task of trying to get new voters into the contest.

    To have a chance of getting anywhere, NM/FAM need new voters and it needs a lot of them, for the numbers-based reasons that we've already given. Although they do great work that is of international benefit, I don't have the impression that they are well-known internationally (I could be wrong) so the best source of support is likely to be Canada.

    Aileen, have you thought of contacting the Canadian ME/CFS/Fibro organisations that I mentioned in my previous two posts? I think that would be a productive step.
  14. Dolphin

    Dolphin Senior Member

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    (Apologies for being a bit late with this update)

    Votes from midnight eastern time/10pm Mountain time last night - incl. increase over previous 24 hours.

    Pacific:
    Whittemore Peterson Institute: 11583 + 1009 = 12592 (numbers have dipped a little - it was 1117 two days ago)
    Be Perfect Foundation: 5651 + 325 = 5976
    Conejo Valley Friendship Circle: 5037 + 243 = 5280
    Surfers Healing 3484+264 = 3748

    Canada:

    Light and Love Home- Vancouver 7123+513=7636 (their numbers are going down a little)
    Saint John Regional Hospital Foundation 3425+235 = 3660
    6th: National ME/FM Action Network 978+105 = 1083
  15. Sasha

    Sasha Fine, thank you

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    Thanks, Dolphin - I remember that last Sunday was quiet for some of the charities as well. Very useful indeed to have these figures!
  16. SpecialK82

    SpecialK82 Senior Member

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    Aileen - do you have a contact with the Nightingale Foundation? Can you ask them to support the Action Network instead?

    Does anyone else have a contact?
  17. SpecialK82

    SpecialK82 Senior Member

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    I would guess the couple people that are supporting the IACFS/ME are not willing to support WPI and may also throw their support to the Action Network.
  18. helen41

    helen41 Senior Member

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    that's a good idea. maybe we need to be marshalling those resources. Right now WPI is looking pretty solid, while ME/FM action continues to lose ground. For today I think I will support ME/FM, just to try to slow down the hemmorrhage. maybe if we could marshall the other groups who would not support WPI there is a chance. re Nightingale, I nominated them (along with ME/FM action). I emailed Nightingale to let them know and never got a response. As far as I can tell, they didn't generate any votes

    Aileen, would you be willing to contact IACFS/ME
  19. Dolphin

    Dolphin Senior Member

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    The IACFS/ME and National ME/FM Network have a bond/connection at the moment, the conference, so the IACFS/ME might be willing to tell their members, etc. However, their members would generally be busy researchers and clinicians and this sort of contest might not be up their street so not sure you'll get many from them. They got 6 votes in the previous 24 hours and have only average 7.4 votes a day since the start. But everything is worth a try.
  20. Tuha

    Tuha Senior Member

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    Aileen, I agree with you - except XMRV - I think its still premature to do any conclusion - but I have no scientic background.
    The problem is not that the people vote for WPI, the problem is that we are so bad organise, patients support is so small that we are not able to support more organisation. lets try to get more voters - there are still 9 weeks to go - enough time and if I will feel safty - I have no problem to dedicate my 7 votes to your organisation.
    Try to look at the situation pragmatic. There is a strong groop of WPI supporters who will not switch. And then the people who would switch if they would feel safty.
    SO the only solution is - to get more voters!!!! then the people will switch
    So lets go to annoy the people.

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