• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Article: Opportunity Knocks: $250,000 for WPI in Vivint Contest

My own view on this is that it's too early in the game to start to split the vote. We're only 6 days in to a 10-week contest and the WPI could get knocked off its perch if the other charities get more support down the line. If the WPI are seen to lose supporters, I think that would would be a morale boost to the other charities in its region and that they would try harder. According to Dolphin's figures, we're also seeing some big daily increases in some groups' votes, which suggest that they are very actively recruiting in these early stages now that the contest is underway (as are we). I wouldn't want to take support away from the WPI at this point.
Yes, I don't think the WPI can start feeling secure yet. I know at least one day there the Conejo Valley Friendship Circle got 1295 votes - more than the WPI ever got in a day (they also did well the day before but I messed up saving the figures). If they kept doing that with the WPI averaging at around 1000 votes a day, they would pass the WPI out.
 
My husband and I are voting religiously every day for the WPI. I am afraid to vote for ME/FM even though the WPI has a substantial lead in their region. Groups can come roaring from behind if they decide to make a concerted effort to do so. And I am a bit of a skeptic when it comes to believing in the legitimacy of all votes. When groups representing rare health conditions amass huge numbers of votes in just a few days, I cringe. As long as Facebook account info matches email account info, I am not sure there is a way for auditors to spot irregularities. I hope I am wrong, and I do believe the vast majority of organizations abide by the rules. At least for the time being, we will keep voting daily for the WPI and keep our fingers crossed that no group in the Pacific region decides to rally the vote by hook or by crook.
 
A vote for the National ME/FM Action Network is as important as WPI. The funds will be used to host the IACFSME International conference. Take a look at who's attending http://iacfsme.org/Conferences/2011FacultyProfessional/tabid/469/Default.aspx and the agenda http://iacfsme.org/Conferences/2011AgendaProfessional/tabid/461/Default.aspx. There is also a patient day where we can learn first hand from the experts. WPI will be attending. See http://iacfsme.org/Conferences/2011FacultyPatient/tabid/468/Default.aspx and http://iacfsme.org/Conferences/2011AgendaPatient/tabid/466/Default.aspx.

These conferences are very important to the scientific community.

I think both organizations can win if we share the voting.
 
A vote for the National ME/FM Action Network is as important as WPI. The funds will be used to host the IACFSME International conference. Take a look at who's attending http://iacfsme.org/Conferences/2011FacultyProfessional/tabid/469/Default.aspx and the agenda http://iacfsme.org/Conferences/2011AgendaProfessional/tabid/461/Default.aspx. There is also a patient day where we can learn first hand from the experts. WPI will be attending. See http://iacfsme.org/Conferences/2011FacultyPatient/tabid/468/Default.aspx and http://iacfsme.org/Conferences/2011AgendaPatient/tabid/466/Default.aspx.

These conferences are very important to the scientific community.

I think both organizations can win if we share the voting.

It would be nice to have 2 organisations which can get money. But I think our situation doesnt allow this. If you look at the votes:
WPI 8626, National ME/FM Action Network 701:
8626 + 701 = 9327
Light and Love Home- Vancouver 5398, Be Perfect Foundation 4435
5398 + 4435 = 9833

So for this moment our biggest concurents have about 500 more votes so we cannot have 2 organisations in the first place in their regions. Also with experiences from other competitions we already know that there can arrive some organisations from nowhere - so even WPI position is not at all sure. We know that our community is not so strong that if it would be necessary we will bring some thousands votes more.

This is more problem, why we get only 1000 votes a day when our community is so large. I vote daily for 7 friends and I know that some friends vote also but I am not sure if daily, I know that some other patients brought also a lot of their friends for daily voting. I would say that there is only 200 patients who vote - Its still big mistery for me this small support compare to the big publicity of this competition (it takes 1 minute a day) - its all the time the same problem- till this will not change - its not realistic that we can support 2 organisations.
sorry, cfs info but I see it like this. but I wish you best of luck with your effort and if you have idea how to find new patients who will vote let us know - we can help you.
I think this is the only way - to share our 1000 votes would be too dangerous. there is more then 9 weeks to the end of the competition
 
I am also voting for the National Organization, I would like to see them get some money also.

Thanks Glen for your support. We are working on something to get the vote out in Canada. We would greatly appreciate WPI supporters taking a few days to bump up the National ME/FM Action Network so we don't keep losing ground while our plan to get more votes takes hold.

A vote for the National group is a vote for research and a vote for support of all the scientists around the world that are working to find a solution for us. This organization is responsible for the Canadian Consensus Document. They are vital members supporting out patient community. It's time we supported them and the IACFSME conference. I know WPI supports them as they plan to speak at the conference in Ottawa.
 
It would be nice to have 2 organisations which can get money. But I think our situation doesnt allow this. If you look at the votes:
WPI 8626, National ME/FM Action Network 701:
8626 + 701 = 9327
Light and Love Home- Vancouver 5398, Be Perfect Foundation 4435
5398 + 4435 = 9833

So for this moment our biggest concurents have about 500 more votes so we cannot have 2 organisations in the first place in their regions. Also with experiences from other competitions we already know that there can arrive some organisations from nowhere - so even WPI position is not at all sure. We know that our community is not so strong that if it would be necessary we will bring some thousands votes more.

This is more problem, why we get only 1000 votes a day when our community is so large. I vote daily for 7 friends and I know that some friends vote also but I am not sure if daily, I know that some other patients brought also a lot of their friends for daily voting. I would say that there is only 200 patients who vote - Its still big mistery for me this small support compare to the big publicity of this competition (it takes 1 minute a day) - its all the time the same problem- till this will not change - its not realistic that we can support 2 organisations.
sorry, cfs info but I see it like this. but I wish you best of luck with your effort and if you have idea how to find new patients who will vote let us know - we can help you.
I think this is the only way - to share our 1000 votes would be too dangerous. there is more then 9 weeks to the end of the competition

I'm not sure i understand why your adding ight and Love Home- Vancouver 5398, Be Perfect Foundation 4435
WPI is now 7000 ahead of Be Perfect foundation. We';re only 6500 behind 1st place in the Can division. If WPI gaves us some support to help us with momentum and morale we could easily get up to first place. If we both win our region then overall in the contest we win $200000. WPI is 13000 behind 1st place overall and falling further behind daily, This would mean overall our causes will just win 100000. If we worked together we'd gain the most benefit and win $200,000
 
I'm not sure i understand why your adding ight and Love Home- Vancouver 5398, Be Perfect Foundation 4435
WPI is now 7000 ahead of Be Perfect foundation. We';re only 6500 behind 1st place in the Can division. If WPI gaves us some support to help us with momentum and morale we could easily get up to first place. If we both win our region then overall in the contest we win $200000. WPI is 13000 behind 1st place overall and falling further behind daily, This would mean overall our causes will just win 100000. If we worked together we'd gain the most benefit and win $200,000

Yes I can see that both would be in first place. I dont know why some would rather have the votes wasted then give them to the ME/CFS National so they could both win $100,000

http://www.vivint.com/givesbackproject/charity/855
 
I'm not sure i understand why your adding ight and Love Home- Vancouver 5398, Be Perfect Foundation 4435
WPI is now 7000 ahead of Be Perfect foundation. We';re only 6500 behind 1st place in the Can division. If WPI gaves us some support to help us with momentum and morale we could easily get up to first place. If we both win our region then overall in the contest we win $200000. WPI is 13000 behind 1st place overall and falling further behind daily, This would mean overall our causes will just win 100000. If we worked together we'd gain the most benefit and win $200,000

WPI is in competition with Be Perfect Foundation, National ME/FM Action Network with Light and Love Home- Vancouver. Regarding the numbers some days ago - if WPI would give to National ME/FM Action Network all votes needed to get in the first place - WPI wouldnt stay in the first place. Now, it would be possible.
We are talking all the time about the same problem, some people will prefere WPI because they strong believe that they are on the right path with their research. The other group of the people would switch to your organisation but they are affraid that the situation can change and WPI will lose its position - there are still 9 weeks to go - remember that that Conejo Valley Friendship Circle got some days around 1300 votes - if it would be regulary - they would go through WPI easily.
I see the only solution - to get more voters.
 
Hi guys,

I do think that we need to take a shot at getting the Action Network going in this contest.

I put out a little analysis of the current situation and a possible plan to move forward on this thread http://forums.phoenixrising.me/show...ly-now-in-Vivint-Round-2!&p=188938#post188938

(Partial transcript) Basically my plan is:

Phase 1 - we work hard at hitting groups in Canada, groups with FM, etc. that are not currently supporting the WPI, to support the Action Network. Also, the floaters on this board can start supporting them as well. We build this group up to the 469 + that is needed to stay even on a daily basis.

Then Phase 2 we ask Andrea if later in the contest, when WPI is unequivocally safe, to throw WPI support to the Action Network for some days in order to close the gap. If we can close it with 1000 votes per day for a week or two we would be in business! Doing this later in the contest will give us the advantage of surprise as well less time for them to respond.

I think we should start brainstorming some ideas to get big chunks of votes, once we get some momentum it will get easier. Heres some ideas to start:

Talk to large groups at church, temple, workplaces, etc, share a few minutes of your story (or have a loved one do it for you) and ask for votes. Can pass around a piece of paper to collect everyones email and then send them the link and regular email reminders throughout the contest.

Contact CFS doctors in Canada and ask if you can send a flyer with instructions to vote that they will pass out to their patients.

Contact FM groups in Canada.
 
SpecialK82 I agree with you. It would be great to get more voters for National Grp. For people that don't know about the National grp They spearheaded the Working Case Clinical Definitions, Diagnostic & treatment Protocols for ME/CFS and FM Consensus Documents, known world-wide as the Canadian Definitions and will be host to the IACFSME International Conference for ME and FM in Ottawa Sept 22-25. These efforts are invaluable to the scientific and research communities. So a vote for them is a vote for research. WPI is a supporter of the conference and will be presenting at it.

I have Dr Stien and Dr Bested in Canada helping to spread the word. We are actively contacting as many places as we can. We need more people to help us. It's just a few of us actively working at it and with ME there is only so much energy per day to devote to it. If there are any Canadians reading this and want to help us, they can contact me at mefmaction@gmail.com to help us coordinate efforts. Thanks
 
We're still hanging out in 6th place. I checked out all the charities above us, and most of them are rare visible children's diseases with no treatments (but known causes). I can understand why they are doing well--it's easy to get people to vote for something like that. And they do likely need the money. On the other hand, it's probably easy to get people to donate at bank drives and such, too.

The fifth place is children's cancer. Another worthy cause. But cancer has so much funding already. And again, easy to raise money for. They don't really need contests like this, except to make family members feel like they're doing something to help.
 
http://blog.vivint.com/2011/08/wildcard

Vivint Gives Back Wild Card draw - win $25,000 for your charity

by Ian Bell

3 August 2011



$25,000 for your charity.

If youve been voting for the Vivint Gives Back Project and your favorite charity isnt anywhere close to the top ten, you may think that theres no point in voting anymore. But there IS a point . . .

A Chance for $25,000 from Vivint Gives Back

Yes its true that the charity with the most votes overall will win $250,000 and the charities with the most votes from each region will win $100,000. But everyone else still has a chance for some money too.
After the grand prize and regional prize winners have been chosen, all remaining charities who receive at least 5,000 votes will be placed in a drawing and the two charities whose names are drawn will be awarded $25,000 each. Want your charity to be included in our drawing? Then just keep voting. You can vote for one charity per day until August 27, so dont stop now!

To vote now or learn more about our project, go to vivint.com/givesbackproject or call 801.705.6264
The IACFS/ME have a chance to get into this contest. Some of us have started voting for them in the last few days - they've been getting around 60 or so votes per day (before that they were only getting 5-10). They need around 250 per day now I think. Perfectly feasible.

Cort, it'd be good if you could highlight it.

(I was voting for the WPI but tend to believe they are safe but am watching the daily tallies. But as there are no avatars (I know of) for the IACFS/ME, I thought I might as well keep the other one: some people continuing to vote for the WPI makes me feel more secure in swapping)

I was voting for the National ME/FM Action Network but don't think they have a chance: they'd need to get around 1500 votes per day and I think they have only once got over 200 votes (220 I think it was) in one day. The National ME/FM Action Network already have enough votes for the draw.

The very maximum number of charities in the draw is 94 (100 - 1 (overall winner) -5 (regional winners)) so every charity who gets in has a reasonable chance.
 
The IACFS/ME have a chance to get into this contest. Some of us have started voting for them in the last few days - they've been getting around 60 or so votes per day (before that they were only getting 5-10). They need around 250 per day now I think. Perfectly feasible.

Cort, it'd be good if you could highlight it.

(I was voting for the WPI but tend to believe they are safe but am watching the daily tallies. But as there are no avatars (I know of) for the IACFS/ME, I thought I might as well keep the other one: some people continuing to vote for the WPI makes me feel more secure in swapping)

I was voting for the National ME/FM Action Network but don't think they have a chance: they'd need to get around 1500 votes per day and I think they have only once got over 200 votes (220 I think it was) in one day. The National ME/FM Action Network already have enough votes for the draw.

The very maximum number of charities in the draw is 94 (100 - 1 (overall winner) -5 (regional winners)) so every charity who gets in has a reasonable chance.
FYI: Just when I send this out, another group in pacific, "It gets better project", puts in a huge jump in one day out of nowhere the biggest jump by any group there so far. It's a bit early to tell whether they can keep it up (occasionally groups have jumped but they have then collapsed in a day or two) and the WPI have such a huge lead on them that their jump still isn't sufficient to meet the daily requirement.

But I'm tending towards going back to voting for the WPI http://www.vivint.com/givesbackproject/charity/769 .

The other alternative to me is the IACFS/ME as there is now a gap of 20915 (=29447 - 8532) between National ME/FM Action Network and the leaders in their region. Assuming that gap doesn't change by the end of today, in the last 17 days of the competition, they would need to get 1230 more than the other group who nearly every day get 400+ and have got around 700 before (and their vote might increase if under pressure). So the National ME/FM Action Network needs 1600-2000 or so votes each day when only once have they got over 200 I think (around 220).