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

[Aileen]

I have never been so angered and so insulted by fellow M.E. patients in all my life!! How dare you people in other countries actively work AGAINST us Canadians??? We have worked so hard in the past to raise money for the American charities in the Chase Contest, yes, including your precious WPI, Sasha. After what I've read on here today -- never again!!

May I remind all of you that the National ME/FM Action Network here in Canada is responsible for the Canadian Criteria, without which researchers would have nothing decent to use in their research. They have been around getting things done for 20 years with next to no money.

You Brits and Americans on the other hand, have given us the name "Chronic Fatigue Syndrome" and the infamous Simon Wessley school to name a few of your accomplishments. So just who do you think you are to tell the rest of the world to ignore Canada's pleas for help.

Unlike the American charities, this is our FIRST, and RARE, opportunity at this kind of money. And we need it desperately to pay for the very expensive international conference in Ottawa in September. Those are just as important as research. And who do you think is going to host them if no one can afford to pay for them?

We Canadians have value and telling us we don't, that we are expendable, that you are far more important is condescending and insulting. Those are the only printable words I can think of to say. You people should be thoroughly ashamed of yourselves!

 

[eric_s]

Sorry you feel so offended, Aileen. I have not posted any recommendations regarding who to vote for, so i don't know exactly what happened, but i don't think anyone wants to work against the ME/FM Action Network.

 

[helen41]

Aileen, I too am Canadian, and although I have been following this thread closely I haven't seen any objectionable posts. My heart lies with the ME/FM Action network in Canada, but I had to make a difficult choice, and after the first days numbers, I chose to support WPI. Even now I think it was the right choice. WPI has a very healthy lead, but if the vote was split, I think there would be trouble in both regions. If we add together WPI and ME/FM actions votes, they have 12501 right now. Adding second place in Pacific, and first in Canada equals 12631, a difference of only 130 votes. At this point it looks like we would very possibly have lost both.
Although I want to support my own country, this is an International illness, and I will support whichever of our charities that is most likely to win the money.

 

[eric_s]

Hi Sasha

Here's the German text. I will see about the Spanish one tomorrow, but i can't write well in Spanish. But i guess the person who runs the forum could do a translation.

I can try to forward the German letter tomorrow or in the coming two days. Maybe it's better you wait for that, before you send it to CFS Aktuell, because i can give it to someone who knows the people at CFS Aktuell well (and also at Fatigatio e.V., the largest German ME/CFS association). But you're of course free to do with it whatever you like.

Eric

Hallo,

Ich bin einer von ber 1.000 Menschen mit ME/CFS, die tglich weltweit online im Vivint Contest abstimmen, um zu versuchen, ber 100.000 US Dollar fr das Whittemore Peterson Institute fr die Erforschung unserer Krankheit zu gewinnen. Ich hoffe, dass Sie den Text unten auf Ihre Website und/oder in Ihre Mailings an Ihre Untersttzer setzen knnten. Forschung hilft uns allen, und hier besteht die Chance, eine sehr groe Menge Geld zu gewinnen!

Herzliche Gre,
Sasha


Das WPI ist dabei $ 100.000 fr die ME/CFS-Forschung zu gewinnen - Helfen wir ihm, noch mehr zu gewinnen!

Im Oktober 2009 verffentlichte das Whittemore Peterson Institute eine Studie ber den mglichen Zusammenhang zwischen dem Retrovirus XMRV und ME/CFS. Diese Forschung fhrte zu einem so zuvor noch nie dagewesenen Interesse unter Wissenschaftlern auf der ganzen Welt an unserer Krankheit. Das WPI verfolgt nicht nur weiterhin die Erforschung von ME/CFS, sondern wird zum 1. August 2011 hin auch noch eine Klinik erffnen, in welcher die neuesten Forschungsergebnisse in die Behandlung von Patienten mit ME/CFS einfliessen sollen, mit der Absicht, Protokolle fr eine erfolgreiche Behandlung an rzte berall auf der Welt zu exportieren. Patienten in jedem Land sollen davon profitieren.

Seit dem 14. Juni stimmen mehr als 1.000 Menschen weltweit tglich online fr das WPI im Vivint Contest fr wohlttige Organisationen. Das WPI liegt derzeit in seiner Region in Fhrung, was bedeutet, dass es, wenn sich nichts mehr ndert, in der Pazifik-Region ein Preisgeld in Hhe von 100.000 $ fr seine Forschung gewinnen wird. Die Patienten wenden sich nun an ME/CFS-Gruppen auf der ganzen Welt, um sie darum zu bitten, ebenfalls mitzumachen und abzustimmen, um dem WPI dazu zu verhelfen, auch das Preisgeld fr smtliche Reginonen zusammen in Hhe von $ 250.000 gewinnen zu knnen. Das WPI befindet sich in dieser Wertung derzeit auf dem vierten Rang, so dass auch dieser Preis in Reichweite liegt.

Diejenige gemeinntzige Organisation, die die meisten Stimmen via Facebook erhlt (ein Konto zu erffnen ist gratis und dauert nur wenige Minuten!), gewinnt. Jeder, berall auf der Welt, kann abstimmen, obwohl die Teilnahme am Wettbewerb auf nordamerikanische Organisationen beschrnkt ist. Man kann (und soll!) bis zum 27. August tglich abstimmen.

Unter diesem Link kann man fr das WPI abstimmen: http://www.vivint.com/givesbackproject/charity/769

Hier kann man sich auf Facebook eintragen, um eine tgliche Erinnerungsmeldung fr die Abstimmung zu erhalten: http://www.facebook.com/event.php?eid=121179681298558

Sie knnten auch Ihren Microsoft Office Kalender verwenden, um sich daran erinnern zu lassen, jeden Tag abzustimmen.

Das WPI befindet sich bereits auf Siegerkurs in der regionalen Wertung - bitte helfen Sie ihm, noch mehr zu gewinnen!

 

[SpecialK82]

((((Aileen)))) soft hugs to you

I'm pretty sure no one on here has any animosity towards the National ME/FM Action Network, I'm so sorry if it has come out that way. I think people just start calculating numbers sometimes, and it probably comes out coldly and insensitive at times, and I truly apologize for any offense. You and others are completely right that the ME/FM Action Network is a very worthy cause. Thanks for posting your feelings because it's better for us all just to communicate, discuss and learn from it.

I think the time is soon that we may be able to support both regions with our numbers, I would be ecstatic if they both win! As Helen said, the risky part is possibly losing both of them, but I am very optimistic.

 

[eric_s]

One more little thing, i think it might be good to add a short and easy description how to vote, so people will be able to do it and are not scared that it's too complicated.

 

[eric_s]

Oops, i just realized that i said something misleading this morning when i said i was smashed. This apparently means drunk in English, but i was not drunk at all. It's a long time since i drank more than one glass or so. I meant smashed like a car that drove against a wall or something like that... Not that it's so important, but i don't want people like those idiots from the recent BMJ article to think i'm somebody complaining about having CFS who in reality is well enough to go out and drink, in Wessely's backyard, etc.

 

[helen41]

Oops, i just realized that i said something misleading this morning when i said i was smashed. This apparently means drunk in English, but i was not drunk at all. It's a long time since i drank more than one glass or so. I meant smashed like a car that drove against a wall or something like that... Not that it's so important, but i don't want people like those idiots from the recent BMJ article to think i'm somebody complaining about having CFS who in reality is well enough to go out and drink, in Wessely's backyard, etc.[/L
HAHA Eric

 

[Aileen]

The problem Helen is that Canada is a separate COUNTRY, not a region. By people deciding that WPI somehow "deserves" the support above National ME/FM Action Network, you are pitting one country against another. That is very different than choosing one charity over another in the same country (which makes sense).

I might also point out that with the help of Canadians, WPI has already won $65,000 this year in a similar contest. This contest will likely be the National ME/FM Action Network's one and only chance to win any kind of money because Canada is not included in most of these contests. They do not have any wealthy benefactors either.

As for Canadians not supporting the Canadian charity here is my view on that:
I too hope the WPI wins the $250,000. I really do. BUT, my first priority has to be to support the organization that helps Canadians. Who got us the Canadian Criteria? Not WPI. It was ME/FM Action Network. Who got the Canadian government to formally recognize ME and FM? WPI? No. It was ME/FM Action Network. Who got Ontario diagnostic codes for ME and FM so patients could get more time with their drs? WPI? No. It was ME/FM Action Network. Who has helped with court cases here in Canada involving insurance companies refusing to pay benefits for ME/FM patients?? .... you get the idea. We owe these people our support. They have been working hard on our behalf for 20 years. The rest of the world is supporting the Americans so it looks like we are on our own and we need everyone on side. If we were all voting for our own charity and getting all our friends and family to do the same, maybe we would actually be a lot higher in the standings. Let the rest of the world take care of WPI, they are anyway.

In my opinion what should be happening since TWO COUNTRIES are involved is this. Canadians should be voting for National ME/FM Action Network. Americans should be voting for WPI. Everyone else should be voting for both. We all should be working like crazy to recruit every friend, relative, neighbour, former classmates, co-workers, church groups, etc... to vote.

 

[glenp]

Please tell me

Please tell me what I am missing here. Whittemore Peterson is way on top winning by an extra approximate 6000 votes. National ME/FM is in sixth place with 976 votes. Am I missing something obvious? Why are we not voting for National ME/FM now? Why would the excess votes be wasted in lieu of ME/FM having them???

glen

 

[Daffodil]

dont we all win if the WPI wins?

 

[glenp]

dont we all win if the WPI wins?

yes but the excess votes are wasted - why would those wasted votes not be used for the National ME/FM to give them a chance at winning in their category too

glen

 

[Tuha]

Please tell me what I am missing here. Whittemore Peterson is way on top winning by an extra approximate 6000 votes. National ME/FM is in sixth place with 976 votes. Am I missing something obvious? Why are we not voting for National ME/FM now? Why would the excess votes be wasted in lieu of ME/FM having them???

glen

the problem is, that there is still 9 weeks to the end of the competition. WPI gets around 1000 votes a day - so they can get on the end around + 63 000 votes, if another organisation gets 1100 votes a day on the end it will be + 69 300 votes - so it would be better than WPI. We already know that that Conejo Valley Friendship Circle got some days around 1 300 votes. So my question is - can we feel safty? I dont think so but if the majority of our community will feel safty I have no problem to switch to National ME/FM. From other simmilar competitions we know that some organisations did a big effort on the end of the competition and we know what happend the last time with Chase community giving. there are even the cheaters. You know what wil happend if 50 kids will decide to create "fictious" account.......

 

[Tuha]

The problem Helen is that Canada is a separate COUNTRY, not a region. By people deciding that WPI somehow "deserves" the support above National ME/FM Action Network, you are pitting one country against another. That is very different than choosing one charity over another in the same country (which makes sense).

I might also point out that with the help of Canadians, WPI has already won $65,000 this year in a similar contest. This contest will likely be the National ME/FM Action Network's one and only chance to win any kind of money because Canada is not included in most of these contests. They do not have any wealthy benefactors either.

As for Canadians not supporting the Canadian charity here is my view on that:
I too hope the WPI wins the $250,000. I really do. BUT, my first priority has to be to support the organization that helps Canadians. Who got us the Canadian Criteria? Not WPI. It was ME/FM Action Network. Who got the Canadian government to formally recognize ME and FM? WPI? No. It was ME/FM Action Network. Who got Ontario diagnostic codes for ME and FM so patients could get more time with their drs? WPI? No. It was ME/FM Action Network. Who has helped with court cases here in Canada involving insurance companies refusing to pay benefits for ME/FM patients?? .... you get the idea. We owe these people our support. They have been working hard on our behalf for 20 years. The rest of the world is supporting the Americans so it looks like we are on our own and we need everyone on side. If we were all voting for our own charity and getting all our friends and family to do the same, maybe we would actually be a lot higher in the standings. Let the rest of the world take care of WPI, they are anyway.

In my opinion what should be happening since TWO COUNTRIES are involved is this. Canadians should be voting for National ME/FM Action Network. Americans should be voting for WPI. Everyone else should be voting for both. We all should be working like crazy to recruit every friend, relative, neighbour, former classmates, co-workers, church groups, etc... to vote.

Aileen, I dont agree with you. I think here is noone who says that WPI deserves the money more but the people try to be pragmatic. Me personally I have no problem to switch to your organisation but what I would say that regarding our numbers - its not at all realistic that with our numbers we will get both organisation on the first place. sure, there are a lot of patients who just believe that WPI with their XMRV finding is the biggest hope for this moment so they will not switch but I dont see this like a problem this is their personal choice. then the others are just pragmatic - they vote for the organisation which has a chance to win.
I think you got angry here about some people who are trying to work really hard to get a lot of votes and I think its not right. I think there is another problem which is said with your last sentence "We all should be working like crazy to recruit every friend, relative, neighbour, former classmates, co-workers, church groups, etc... to vote." I vote for 7 persons who gave me their passwords and some other friends vote alone - I know a lot of other patients who brought even much more daily votes, they exchange the votes,.... so if our community gets around 1200 votes a day - how many patients follow the competition? - maybe 200-300. This is our problem - this sad number of support. The publicity is everywhere, you can see it in all ME/cfs forums/web sites,... - it had to reach ten thousands of patients. We cry all the time that there is no financial support for governement, you can read thousand of posts about this but then when the patients should spend 1 minute a day with voting - then they dont do. this is our problem and not the people who tries to do their best to find some more people for voting. if you have any idea how to get some more patients to this competition just tell me and I will invest 2 hours a day to do it - and without problem to promote canadian organisation.
btw. this is not at all about if its american or canadian - there are maybe half of european people who vote.

 

[Sasha]

That's some first post, Aileen! Welcome to the forums.

I'm not sure how long you've been following our discussion of the Vivint competition but it began way back in this thread about Round 1 (280 posts long!) during which we had a lot of discussion about how to maximise the gains for all people with ME/CFS in the Vivint contest. Many of us, including me, weren't voting for the WPI because they were clearly safe; we voted for NM/FAM (I had its link in my signature promoting it for a long time) and other ME/CFS charities in Round 1, to be sure that it would at least have a shot at getting matching funds in Round 2 and a chance of winning its region.

We kept a close eye on NM/FAM because Canada as a Vivint "region" was getting fewer votes overall and we discussed long and hard whether the best strategy would be to support the WPI, the NM/FAM, or split the vote and try to win both. The strategy that we decided on was to support the WPI initially in Round 2, to give it the best shot for the $250,000, because the WPI was already getting the strongest support and was best known internationally and so likely to get even more support if we could push them. We also decided that if there came a point where the WPI seemed either so safe or so doomed that it made no sense to keep voting for them, that we should switch votes to the NM/FAM. We agreed that we needed to see how Round 2 went for a while because of our experience of the Chase contest in which the WPI appeared to be winning and then got overtaken out of nowhere; and because the behaviour of groups changes over time in response to how other people are doing in the contest.

We are only about 10 days into a 75 day contest and my own view is that it is too early to tell how safe WPI is in its region. Unless we can get a lot more support reasonably quickly, I can't see them catching up the trans-region leaders but we're actively trying to get that support. The more support we get, the more votes we'll have to play with.

At the moment, the numbers don't add up for a split vote. WPI leads its region today by 6,132 votes; NM/FAM lags in its region by 6,743 votes. If we split the vote, they both lose. Quite simply, we need more votes. Anything you can do to get more votes would be great. Have you contacted the Canadian organisations on the Wiki link that Francelle provided (here)? I didn't send them my WPI message about the contest because I was assuming they'd want to support the NM/FAM but was too much on auto-pilot to think of adapting it. If you'd like to adapt the text for the WPI message I've been sending out to save yourself some time, please feel free.

I think we are all ready to actively support the NM/FAM if pragmatically it appears winnable without risking our "bird in the hand". NM/FAM does great stuff. But we need the total numbers and as yet, we don't have them.

 

[Sasha]

Hi Sasha

Here's the German text. I will see about the Spanish one tomorrow, but i can't write well in Spanish. But i guess the person who runs the forum could do a translation.

I can try to forward the German letter tomorrow or in the coming two days. Maybe it's better you wait for that, before you send it to CFS Aktuell, because i can give it to someone who knows the people at CFS Aktuell well (and also at Fatigatio e.V., the largest German ME/CFS association). But you're of course free to do with it whatever you like.

Hi Eric - that's brilliant -thanks so much for doing the translation. Just let me know what you want me to do - if you're happy to approach CFS Aktuell and Fatigatio e.V. via your contacts, that's probably better than them getting something from me that might just end up in their spam tray. I'll do the other German ones (and the Swiss one).

Sorry to hear you were crashed rather than happily smashed!

 

[Dolphin]

9 hours ago, I recorded the votes 10 days in.

One thing about that is that it's easier to do mental calculations to see what the average vote has been - just knock off the last digit*. Although perhaps the daily increase is more interesting:

(Groups ahead of the WPI nationally)
Foundation for Angelman Syndrome Therapeutics (FAST): 17701 + 2625 =20326
Team Sanfilippo Foundation: 17416 + 2611 =20125
CHERUBS: 15050 + 1744 =16794
International Rett Syndrome Foundation: 9675 + 1393 = 11068

News remains good in Pacific:
Whittemore Peterson Institute: 9418 + 1117 = 10535 (best vote ever?)
Be Perfect Foundation: 4812 + 451 = 5263 (they got 451 the day before as well!)
Conejo Valley Friendship Circle: 4276 + 414 = 4690 (they got 410 the day before so are also pretty consistent)

*if you want to be exact, the usual rule for rounding is to add 1 if it is 5 or more - although if it's a 5, in this case, it should really just be add .5 as it's not any closer to the number above than the number below)

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

Pacific:
Whittemore Peterson Institute: 10535 + 1048 = 11583 (a bit down from 1117 yesterday)
Be Perfect Foundation: 5263 + 398 = 5651
Conejo Valley Friendship Circle: 4690 + 347 = 5037
Surfers Healing 3165+319=3484

Canada:

Light and Love Home- Vancouver 6547+576=7123
Saint John Regional Hospital Foundation 3176+249=3425
6th: National ME/FM Action Network 881+97=978

 

[Dolphin]

Aileen, I dont agree with you. I think here is noone who says that WPI deserves the money more but the people try to be pragmatic. Me personally I have no problem to switch to your organisation but what I would say that regarding our numbers - its not at all realistic that with our numbers we will get both organisation on the first place. sure, there are a lot of patients who just believe that WPI with their XMRV finding is the biggest hope for this moment so they will not switch but I dont see this like a problem this is their personal choice. then the others are just pragmatic - they vote for the organisation which has a chance to win.

I think you got angry here about some people who are trying to work really hard to get a lot of votes and I think its not right. I think there is another problem which is said with your last sentence "We all should be working like crazy to recruit every friend, relative, neighbour, former classmates, co-workers, church groups, etc... to vote." I vote for 7 persons who gave me their passwords and some other friends vote alone - I know a lot of other patients who brought even much more daily votes, they exchange the votes,.... so if our community gets around 1200 votes a day - how many patients follow the competition? - maybe 200-300. This is our problem - this sad number of support. The publicity is everywhere, you can see it in all ME/cfs forums/web sites,... - it had to reach ten thousands of patients. We cry all the time that there is no financial support for governement, you can read thousand of posts about this but then when the patients should spend 1 minute a day with voting - then they dont do. this is our problem and not the people who tries to do their best to find some more people for voting. if you have any idea how to get some more patients to this competition just tell me and I will invest 2 hours a day to do it - and without problem to promote canadian organisation.
btw. this is not at all about if its american or canadian - there are maybe half of european people who vote.

Well said, Tuha.

 

[Dolphin]

That's some first post, Aileen! Welcome to the forums.

I'm not sure how long you've been following our discussion of the Vivint competition but it began way back in this thread about Round 1 (280 posts long!) during which we had a lot of discussion about how to maximise the gains for all people with ME/CFS in the Vivint contest. Many of us, including me, weren't voting for the WPI because they were clearly safe; we voted for NM/FAM (I had its link in my signature promoting it for a long time) and other ME/CFS charities in Round 1, to be sure that it would at least have a shot at getting matching funds in Round 2 and a chance of winning its region.

We kept a close eye on NM/FAM because Canada as a Vivint "region" was getting fewer votes overall and we discussed long and hard whether the best strategy would be to support the WPI, the NM/FAM, or split the vote and try to win both. The strategy that we decided on was to support the WPI initially in Round 2, to give it the best shot for the $250,000, because the WPI was already getting the strongest support and was best known internationally and so likely to get even more support if we could push them. We also decided that if there came a point where the WPI seemed either so safe or so doomed that it made no sense to keep voting for them, that we should switch votes to the NM/FAM. We agreed that we needed to see how Round 2 went for a while because of our experience of the Chase contest in which the WPI appeared to be winning and then got overtaken out of nowhere; and because the behaviour of groups changes over time in response to how other people are doing in the contest.

We are only about 10 days into a 75 day contest and my own view is that it is too early to tell how safe WPI is in its region. Unless we can get a lot more support reasonably quickly, I can't see them catching up the trans-region leaders but we're actively trying to get that support. The more support we get, the more votes we'll have to play with.

At the moment, the numbers don't add up for a split vote. WPI leads its region today by 6,132 votes; NM/FAM lags in its region by 6,743 votes. If we split the vote, they both lose. Quite simply, we need more votes. Anything you can do to get more votes would be great. Have you contacted the Canadian organisations on the Wiki link that Francelle provided (here)? I didn't send them my WPI message about the contest because I was assuming they'd want to support the NM/FAM but was too much on auto-pilot to think of adapting it. If you'd like to adapt the text for the WPI message I've been sending out to save yourself some time, please feel free.

I think we are all ready to actively support the NM/FAM if pragmatically it appears winnable without risking our "bird in the hand". NM/FAM does great stuff. But we need the total numbers and as yet, we don't have them.

Well said, Sasha.

Like you, I barely voted for the WPI at all in Round 1: it seemed safe to me so I voted to help other groups in. I was careful with my vote and didn't want to waste votes - I tried to check every day to see which groups needed them most. My signature also even said to vote for other groups as the WPI was safe.

What was interesting was how an awful lot of the WPI voters weren't sharing out their votes - but if they read the threads we had here, I'm not sure anybody was saying keep voting for the WPI.

I was also open to the idea of voting for the National ME/FM Action Network in Round 2, most likely later in the competition.

However, that was before we saw that the Light and Love Home- Vancouver were getting over 600 votes a day (they averaged 655 a day in the first 10 days of the competition; I also saw they got a similar number in the last day of Round 1). That is a lot of votes - few groups got over 400 per day in the last 10 days of Round 1. So I'm taking a pragramatic view that they don't look to me like they [the National ME/FM Action Network] have much of a chance esp. as they are only getting 100 or so votes a day. The National ME/FM Action Network will need to be getting 400+ votes a day I think before I'll consider giving any votes.

And I don't see myself voting for the National ME/FM Action Network before August. The WPI aren't getting so many votes as to feel very secure - as Tuha (?) pointed out, the Conejo group were getting 1,300 votes a day for a short period.

BTW, Sasha, you might need to change your change as the WPI is not in 5th.

 

[Sasha]

BTW, Sasha, you might need to change your [signature] as the WPI is now in 5th.

Thanks, Dolphin - done!