$$$ for WPI vote daily now in Vivint Round 2!

[SpecialK82]

It is also too early to dismiss the WPI's chances of winning overall. Marly says

Um, this surely doesn't mean the WPI would need 18,959 votes a day does it? It is just badly written, isn't it? Actually, at two weeks in, the WPI needs a bit more than double the votes every day to win overall, from this point, if other charity's votes remain constant. So, a bit more than double what we have been getting so far would do it.. So if everyone could find a way of a bit more than doubling their votes from friends, family and wherever else, then the WPI would be in with a chance of the top prize of $250,000, without risking the $100,000 at all.

Jace, I understand what you are saying and I respect your opinion. It is a risk to split our community's votes, that's why I think our number one strategy should be to get new voters for Action Network and not rely on WPI for most of them. However, I would be OK if 100 -200 came over to the Canadian side to give them a boost.

You are completely right that we should have many, many more votes from the patient community - honestly I don't know why we don't have 5,000 - 10,000 per day. I am at a loss to understand this myself.

Honestly, the leaders are posting 3,000 - 3,200 votes per day and they are in a fighting fiercely. WPI would have to get way more than this per day, from here on out just to tie them. If WPI was increasing their vote each day steadily - if people were actually working at it, then I could see how we might make some big increases and have a chance. But, unfortunately, that is not the case, I hate it, but it just is.....

We only have to get about 700 votes per day to tie the Canadian leader, it's purely a numbers thing for me, I think it would be much easier to come up with these votes and then ask the WPI much later in the competition when their lead is HUGE, to throw their support to Canada for a week - two weeks to close the gap.

Basically, it's a calculated risk for me, and I'll be monitoring the numbers closely each day to see if I should switch back.

 

[SpecialK82]

Jace, Sasha its also for me still big miracle and also really big disappointment that even for WPI there is a poor support. I thought that at least for WPI the people will wake up and try to do an effort - what we are waiting for? - that the help will fall from the sky? how many patients are voting - 200?, 300? where are the others?
I think in this situation we cannot expect that we will get 1000 votes more - i am not expecting that a lot of new patients will start to vote - the only way which I see - that the patients who already vote will ask more friends to vote regulary. I will have soon a party with my friends so I hope I will get there some friends for this competition - maybe its a good reason to have a party

You are so right, good for you for having a party, sounds like fun

 

[SpecialK82]

I just emailed Adrienne Dellwo, she is the journalist with FM that writes a regular column on About.com about CFS and FM. I explained the contest and ask if she would be willing to publicize it for us. (Both for WPI and for Action Network).

fingers crossed......

 

[cfs info]

I just emailed Adrienne Dellwo, she is the journalist with FM that writes a regular column on About.com about CFS and FM. I explained the contest and ask if she would be willing to publicize it for us. (Both for WPI and for Action Network).

fingers crossed......

I wrote her too so hopefully she will write an article.

 

[cfs info]

now I am also voting with half from my 7 votes for the National ME/FM Action Network. I think today they will get a bit more than 200 votes. But they need at least 7OO - so they are still far away. I will continue to vote for them 3-4 days and if they will not get at least 500 with continuing of growing votes - I will go back to WPI.
a lot of people feel safe with WPI but I wouldnt. That "Journey 4 A Cure Inc" which changed WPI on the 5th place got 600-700 more votes during the last days. if it will happend in WPIs region - WPI can easily lose the first position. Remember, we are really weak community and we will not be able to increase our votes with some hundreds more votes.
Jace, Sasha its also for me still big miracle and also really big disappointment that even for WPI there is a poor support. I thought that at least for WPI the people will wake up and try to do an effort - what we are waiting for? - that the help will fall from the sky? how many patients are voting - 200?, 300? where are the others?
I think in this situation we cannot expect that we will get 1000 votes more - i am not expecting that a lot of new patients will start to vote - the only way which I see - that the patients who already vote will ask more friends to vote regulary. I will have soon a party with my friends so I hope I will get there some friends for this competition - maybe its a good reason to have a party
seriously, I think we will be really happy if 1 organisation will win - I dont see it at all optimistic these numbers. I think we are seriously nowhere. We should start on all ME/ cfs forums/organisations a serious discussion how to continue and to talk about the need of patients support. these numbers give us no hope.

Thank you for your support. I can tell you were are very actively working on geting more Canadian to vote for us. It just takes some time. I ask that you continue to vote for us. I request that you contine to support the National group for a few weeks not days.
Thank you in advance for your support.

 

[jace]

With this dual strategy at this early stage, by splitting the vote we are risking total failure. No prize for anyone. Ziltch. Nada. Menos dinero, no mas.

We know that PANDORA and the CAA don't advocate for or support the WPI. Their front webpages don't include anything about Vivint at all (though PANDORA still has CHASE buttons - no longer functioning, of course). So it is down to us, on the forums, to get the votes needed.

The high risk strategy, two weeks in to a ten week process (ie early days yet) is to split the vote and risk loosing both regions.

If we remain faithful, and stay with voting for the WPI every day, we give the best chance of winning at least $100,000 and we gain a shot at the top prize as well, $250,000, which is more than if the risky strategy of going for the two times $100,000 worked. But we may not win two regions. Trying to do that might mean we loose in both regions.

Everyone in the contest will be able to benefit from the matching donation period, so everyone can get something without this risky, arrogant strategy.

Please! Come back to the WPI! It is far too early in the day to predict the outcome. We risk all by changing horses in mid-stream.

Please! those of you that have given any support to the WPI in the past, change your signatures back...

Don't let the sirens lure us on to the rocks

 

[Francelle]

I agree with you SpecialK82. I also don't understand why we are not getting 5,000 + votes per day and it is somewhat disappointing. There is probably a fair bit of complacency by many people who don't really understand the need for scientific research. The other day I posted a message on a Fibromyalgia forum and no-one seemed to have any idea what I was referring to when I mentioned Vivint. One of the moderators told me it had already been posted and gave me 'the' link, which when I went to it was a link for Chase Community Giving. S/he had no idea and didn't really want to know was the impression I got. That too was disappointing!

Regarding voting for the Canadian M.E. group: unless we are still trying to go for No 1. overall for the WPI, I reckon by watching their position carefully and keeping their lead at 10,000 votes ahead of the next runner, I don't think the WPI could be taken by surprise in the Pacific region. We need to be monitoring for this daily though. I've been printing off the daily stats for the Pacific region and Canada and comparing the votes and each day the WPI is still gaining over the others. Possibly by tomorrow the lead will be 10,000 votes clear. The lead increased by 700+ this past 24 hours.

 

[Dolphin]

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

That means these are the Votes after 15 days (1/5 of the contest)

Pacific:
Whittemore Peterson Institute: 14607 + 964 = 15571
Be Perfect Foundation: 6618 + 322 = 6940
Conejo Valley Friendship Circle: 5727 + 255 = 5982
Surfers Healing 4256 +241 = 4497

Canada:

Light and Love Home- Vancouver 8841 +585= 9426
Saint John Regional Hospital Foundation 4238 + 281 = 4519
6th: National ME/FM Action Network 1405 + 167 = 1572 (a slight reduction on the 176 from the previous day)

Overall (groups ahead of the WPI):
Foundation for Angelman Syndrome Therapeutics (FAST): 31736 +3056 = 34792
Team Sanfilippo Foundation: 31389 + 3013 = 34402
CHERUBS: 22952 + 1535= 24487
International Rett Syndrome Foundation 16008 + 1283= 17291
5th (overtook the WPI) Journey 4 A Cure Inc 14252 +1645= 15897

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



Pacific:
Whittemore Peterson Institute: 15571 + 1017 = 16588
Be Perfect Foundation: 6940 + 329 = 7269
Conejo Valley Friendship Circle: 5982 + 293 = 6175
Surfers Healing 4497 +235 = 4732

Canada:

Light and Love Home- Vancouver 9426 +630= 10056
Saint John Regional Hospital Foundation 4519 + 241 = 4760
6th: National ME/FM Action Network 1572 + 198 = 1770 (the biggest vote yet, but still not 200)

Overall (groups ahead of the WPI):
Foundation for Angelman Syndrome Therapeutics (FAST): 34792 +3316 = 38108
Team Sanfilippo Foundation: 34402 + 3255 = 37657
CHERUBS: 24487 + 1733 = 26220
International Rett Syndrome Foundation 17291 + 1568= 18859
Journey 4 A Cure Inc 15897 +1612= 17509

(The initial pdf didn't work but have put up a new one)

 

[eric_s]

From a quick glance at these numbers it looks as if the National ME/FM Action Network would need around 600 additional votes per day to win its region.

If these votes came from the WPI, the WPI would still be more or less on par with its contenders, as far as daily votes are concerned, and that's what's necessary to keep the lead (based on yesterday's numbers, which may not be representative of the full potential of those contenders). So, if the numbers were always like those from the last day, we could get both to number 1 with the current participation from our community.

Or course there would be some serious risk involved for the WPI with this strategy.

I think one has to be honest and see that the overall number 1 position is probably out of reach, unless we could seriously boost participation (which is possible, but it has to happen).

So i guess the more realisitic choice is between playing it safe for 100'000$ or taking the chance to potentially get 200'000$, while increasing the risk to get nothing at all.

If people wish so, i could make a spreadsheet, so we can analyze things a bit better. Or maybe someone has already done that and could upload it here.

I think this is a mathematical question and we should try to look at it objectively. Both charities, the WPI and the National ME/FM Aciton Network, deserve to get a prize, it should not be about one group against the other, but about how we can get the best result for ME/CFS research.

What seems clear to me, is that if we chose to support both and try to aim for 200'000$, everybody should be prepared to immediately abandon one charity (in the contest) and throw the support of the entire community behind the other one, if that's necessary to secure at least one number one position.

Correct me if i made a mistake somewhere.

 

[Sasha]

I've been surprised at how low-key WPI has been about the Vivint contest. I don't know much about Facebook, but can they hit a button and send a message to all those likers to ask them to boost the vote? If so, would someone be willing to email them and suggest it (sorry, I'm wiped)? It seems such a huge untapped resource.

Done this now - hope they bite. Also suggested they send another email to their supporters.

 

[Purple]

Regarding voting for the Canadian M.E. group: unless we are still trying to go for No 1. overall for the WPI, I reckon by watching their position carefully and keeping their lead at 10,000 votes ahead of the next runner, I don't think the WPI could be taken by surprise in the Pacific region. We need to be monitoring for this daily though. I've been printing off the daily stats for the Pacific region and Canada and comparing the votes and each day the WPI is still gaining over the others. Possibly by tomorrow the lead will be 10,000 votes clear. The lead increased by 700+ this past 24 hours.

Conejo Valley Friendship Circle is part of Friendship Circle International - a worldwide organisation with 79 locations worldwide and 11,000 teen volunteers:
http://www.friendshipcircle.com/about_friendship_circle_international.asp

 

[Sasha]

Conejo Valley Friendship Circle is part of Friendship Circle International - a worldwide organisation with 79 locations worldwide and 11,000 teen volunteers:
http://www.friendshipcircle.com/about_friendship_circle_international.asp

I thought they were some local outfit (in Conejo Valley, oddly enough). That explains how they managed to storm up early on - how odd that they've slowed down to such an extent.

I had a bit of a brainflip earlier and thought we were 2 weeks into a 7-week contest, not a 10-week one (and I'm the one who has been going on about it being 10 weeks). I thought we were a third through, not a fifth. I'm switching back to WPI for the moment but as ever will keep an eye on the numbers.

I think we have a huge task either to get WPI to have a crack at the transregional or for NM/FAM to have a crack at Canada. Numbers-wise, the latter is more achievable but could risk WPI in the Pacific. No wonder we're in such a dilemma.

And we still have the problem that we don't control the direction of the voting - we have no idea how many people are listening to us, let alone how many people would actually act on any suggestion from us. I think we just have to rack up the total vote all we can at this stage.

 

[frenchtulip]

I think we should really watch the Friendship Circle. I keep remembering how some of the religious schools moved up quite quickly in Round 2 of the Chase Contest. Some groups may be playing it cool right now and then pull out all the stops during the last few days. The Friendship Circle could rally thousands and thousands of votes so easily in the last week. I don't think the WPI can win the 250K and it is going to be hard to get ME/FM into first place in their region. I just hope nothing happens to upset the WPI. It will really help when Vivint posts what we are allowed to do to generate votes--swap, etc. In a perfect world, people would vote based on the merit of an organization, but this is not a perfect world. I'm feeling conservative and think I will use our family's votes for the WPI, and if we get clarification from Vivint and vote swapping is permitted, I'll try to get votes for ME/FM.

 

[Dolphin]

I think we should really watch the Friendship Circle. I keep remembering how some of the religious schools moved up quite quickly in Round 2 of the Chase Contest. Some groups may be playing it cool right now and then pull out all the stops during the last few days. The Friendship Circle could rally thousands and thousands of votes so easily in the last week. I don't think the WPI can win the 250K and it is going to be hard to get ME/FM into first place in their region. I just hope nothing happens to upset the WPI. It will really help when Vivint posts what we are allowed to do to generate votes--swap, etc. In a perfect world, people would vote based on the merit of an organization, but this is not a perfect world. I'm feeling conservative and think I will use our family's votes for the WPI, and if we get clarification from Vivint and vote swapping is permitted, I'll try to get votes for ME/FM.

I'm not sure it would make sense for groups to play it cool at the moment - if they have access to lots of votes, they could have a chance of winning 250K but you won't win that prize with a week's worth of voting.

Yes, I think the chances of the WPI winning the 250K look tiny (1/1000 ~ p=.001?).

The chances of the WPI winning Pacific currently look very good (hard to be sure what they are - depends on Conejo really).

Votes given to the National ME/FM Action Network instead of the WPI reduce the chances of the WPI winning. This only makes sense at the moment if the National ME/FM Action Network really does have a chance. So basically the National ME/FM Action Network/its supporters needs to prove it has a chance by getting lots of voters. Many of us in August may feel freer to vote for the National ME/FM Action Network - at the moment with so many weeks to go, we don't know if this is giving votes to a "no hope" group or not, nor do we know well how relatively safe or otherwise the WPI is.

 

[eric_s]

Conejo Valley Friendship Circle is part of Friendship Circle International - a worldwide organisation with 79 locations worldwide and 11,000 teen volunteers:
http://www.friendshipcircle.com/about_friendship_circle_international.asp

Oooof... this looks like danger... I don't have time to check this organisation now, but the way it looks i think we have to be very careful about diverting votes away from the WPI. It hurts me to say this, but it would be a big shame if Conejo were to suddenly bring in many new voters and this would cost the WPI the number one position.

 

[helen41]

Conejo Valley Friendship Circle is part of Friendship Circle International - a worldwide organisation with 79 locations worldwide and 11,000 teen volunteers:
http://www.friendshipcircle.com/about_friendship_circle_international.asp

I'm not sure they are as big a risk as it first appears. Yes, the International chapter says they have 11,000 volunteers, but their facebook page http://www.facebook.com/fcinternational has less than 2000 fans. They were asking people to endorse their New York chapter and they didn't make it to the top 20 in the first round. I don't see Agoura Hills (the one in the running) mentioned on their page at all, nor are they listed as friends with the International group.
We have to be vigilant, but I believe we should stick to the plan and try to support ME/FM action at this point

 

[cfs info]

If Conejo is connected with schools, then won't the student be away for the summer vacation and not within their control to get them to vote?

If we support National ME/FM Action now, we get them caught up closer to the leader it makes the odds of getting #1 better. If we wait too long before giving them support they could be in too much of a hole to recover. I think we should be giving them support now while WPI has a comfortable lead. We are still actively trying to get more votes. As you can see by the stats our numbers are steadily increasing.

 

[eric_s]

Ok, 2'000 is better than 11'000. But as we know, a Facebook account can be created quickly and 100'000$ might be a big motivation. Also the local chapters might have more Facebook fans, but i don't know. What is Agoura Hills? The same as Conejo Valley?

I don't have time and energy to really get into the numbers here, but with our current participation, i think if we wanted to bring NM/FAN to number one, we could "only" maintain the currect lead the WPI has.

If the Friendship Circle then was suddenly able to bring in 2'000 more voters, for example, they would be able to go past the WPI within a week or so.

I'm not saying we should not support the NM/FAN, but now, with this information, Conejo looks like they at least have the potential to be very dangerous. New voters for our charities is what would help us best, as many have said before.

 

[helen41]

Agoura Hills is the Chapter of the Friendship Circle in the Pacific that is in the Vivint contest. The other chapter that entered the contest, the one the International Friendship Circle supported, didn't make it into the top 20

 

[jace]

In a few short years, the WPI have built a state of the art lab and treatment center, moved the science forward re causation and treatment of this disease, raised the political profile, advocated effectively, been kind to every single patient that has contacted them, shall I go on? Met with British decision makers, opened a line of communication with the BMJ (have you seen what they are publishing in their rapid responses?) educated US decision makers, liaised with doctors and scientists both in Europe and the Americas, shall I go on?

The Whittemore Peterson Institute gets a big bang for their bucks.

I am sure the National ME/FM Network are very worthy, and we are all advocating for the adoption of Carruthers et al (2003) (the Canadian Consensus) but you cannot compare their effectiveness with the achievements of the WPI.

Please do not risk the WPI loosing the Pacific region. Please do not split the vote. Please vote WPI in Vivint every day, and find one more person this week to join us.