On this point, I don't think much has changed. If one goes back to papers that are 5-10 years old, one can lots of rapid responses from the ME/CFS community.
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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.
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$$$ for WPI vote daily now in Vivint Round 2!
- Thread starter Sasha
- Start date
Votes from midnight eastern time/10pm Mountain time last night - incl. increase over previous 24 hours.
Pacific:
Whittemore Peterson Institute: 16588 + 1049 = 17637
Be Perfect Foundation: 7269 + 296 = 7565
Conejo Valley Friendship Circle: 6175 + 150 = 6325 (that's a drop there for them)
Surfers Healing 4732 +247 = 4979
Canada:
Light and Love Home- Vancouver 10056 +559= 10615
Saint John Regional Hospital Foundation 4760 + 257 = 5017
6th: National ME/FM Action Network 1770 + 173 = 1943 (that's a drop from the 198 yesterday; they have still not gone over 200)
Overall (groups ahead of the WPI):
Foundation for Angelman Syndrome Therapeutics (FAST): 38108 +3035 = 41143
Team Sanfilippo Foundation: 37657 + 2941= 40598
CHERUBS: 26220 + 1543 = 27763
International Rett Syndrome Foundation 18859 + 1377= 20236
Journey 4 A Cure Inc 17509 +1444= 18953
What worries me about this bunch is that they're a load of teenagers - the Facebook Generation - and must surely be massively networked. At one point they were getting 1,300 votes a day - the mystery is why that fell off. Presumably they're about to go into summer vacation - all that spare time on their hands, more time to get involved in their charity, more time to get on Facebook and recruit their friends... they worry me. Meanwhile, we're begging a bunch of very sick adults who are extremely concerned about their privacy to get Facebook accounts and it's more of a hard sell for us.
Daffodil
Senior Member
- Messages
- 5,875
aileen would you mind posting the link for the canadian charity on facebook here? i am very bad at facebook..i only joined it for these purposes. i am canadian too and since wpi is very safe, maybe i will start voting for the canadian one.
thanks
sue
thanks
sue
Hi jace - we've got some strong supporters of both organisations on this thread and I can see the merits of both. But I would still argue that this is a voting contest not a cash donation situation and so our strategy has to be based on the numbers. You can't waste a cash donation but you can waste a vote. If NM/FAM had the Round 1 & Round 2 numbers history that WPI had and vice versa, I'd have been pushing for NM/FAM all the way because they'd have a strong chance and WPI wouldn't. As it is, the numbers are telling me that a vote for WPI is likely to secure them 1st place in the Pacific and a vote for NM/FAM at this point might not benefit them.
I'd say let's try to get more votes, total! And what matters most is that people vote at all - we don't have enough of that going on yet. If we did, we wouldn't be agonising over the dilemma of which of two important charities to vote for.
Hi Daffodil - the voting link to NM/FAM (the Canadian charity) is in my signature below this message - not sure if that's the one you're after.
helen41
Senior Member
- Messages
- 567
- Location
- Sleepy Hollow Canada
Daffodil, this is the link to ME/FM Action's FB page https://www.facebook.com/pages/National-MEFM-Action-Network/119761554710463
SpecialK82
Ohio, USA
- Messages
- 993
- Location
- Ohio, USA
Fourth of July weekend (Independence day) is starting here in the US. This means family get-togethers, barbeques, fireworks and celebrations. I'm sure votes will dip across the board. So our community should stay focused and keep up our votes!
- Messages
- 59
Thanks Eric for your comments. I believe we can both win $100,000 if we all work together. We are a community that needs to work together and we can't afford to take sides. Together we can accomplish a lot and win $200,000 for our community.
- Messages
- 59
Here are the links
http://www.vivint.com/givesbackproject/charity/855 and Join https://www.facebook.com/#!/event.php?eid=110293289062328 for a daily reminder.
May 12th said... no, on this forum it's cfs info 
I sure hope you are right about that. I remember the last days of Chase. I fear that because of your tactics, no ME/CFS charity will get more than the $2,500 matched donations. Think about it.
Daffodil (Sue) said
Nothing is safe yet. We are two and one half weeks into a ten week contest. We are only one quarter of the way there. Splitting the vote like this is sooooo risky. Please, crunch some numbers and think on.
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 and been kind to every single patient that has contacted them. The Whittemore Peterson Institute will get the biggest bang for the bucks. Please don't risk loosing this important funding.
I sure hope you are right about that. I remember the last days of Chase. I fear that because of your tactics, no ME/CFS charity will get more than the $2,500 matched donations. Think about it.
Daffodil (Sue) said
Nothing is safe yet. We are two and one half weeks into a ten week contest. We are only one quarter of the way there. Splitting the vote like this is sooooo risky. Please, crunch some numbers and think on.
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 and been kind to every single patient that has contacted them. The Whittemore Peterson Institute will get the biggest bang for the bucks. Please don't risk loosing this important funding.
Regarding "safe": in Round 1, I did use the word in various ways - usually qualified a bit (e.g. "fairly safe" - IIRC).
However, that was when there were 20 places per region.
Similarly in Round 1 of Chase Community Giving it could have been used [in a way similar to Round 1 of vivint] when 100 groups qualified.
Round 2 of Vivint is totally different and I don't think one should be talking about a group being "safe" now unless the word is heavily qualified (and it would still only be one person's opinion, not mine).
However, that was when there were 20 places per region.
Similarly in Round 1 of Chase Community Giving it could have been used [in a way similar to Round 1 of vivint] when 100 groups qualified.
Round 2 of Vivint is totally different and I don't think one should be talking about a group being "safe" now unless the word is heavily qualified (and it would still only be one person's opinion, not mine).
We have to keep focussing on our main chance of serious money, the Whittemore Peterson Institute. If a week is a long time in politics, it's even longer in these voting competitions. Vivint goes on until the end of August, for goodness sakes. That's over eight weeks away - we are not even a quarter of the way through, despite what I said in my last post.
Any other strategy at this time risks total failure to gain any prize money for our community at all I am totally serious. This is totally serious. We have a responsibility to do everything we can to ensure we get some funding, with all the efforts we are making.
How would you feel if no ME/CFS charity made it, in the end, to the top of any of the boards?
Any other strategy at this time risks total failure to gain any prize money for our community at all
I am totally serious. This is totally serious. We have a responsibility to do everything we can to ensure we get some funding, with all the efforts we are making. How would you feel if no ME/CFS charity made it, in the end, to the top of any of the boards?
Race in Canada
At the moment, with 1 hour less than 18 days gone
Light and Love Home- Vancouver has 11086
and
National ME/FM Action Network has 2086.
A gap of 9,000 exactly or approx. 500 per day (it would be exactly if one rounds to 18 days).
These are average daily votes of 616 and 116 (although we know that the National ME/FM Action Network vote has picked up a little in the last few days).
Making up 9,000 votes over the remaining 57 days, means getting an average of 158 votes more than Light and Love Home- Vancouver every day.
If Light and Love Home- Vancouver remained consistent, that would mean 774 votes per day would be required.
Also, even if the National ME/FM Action Network were to gradually get more votes, it would be getting less than 774 for a period so would need to average more than that over the remaining days.
If however Light and Love Home- Vancouver brought in more votes, the number would be bigger than 774.
It all looks very hard.
The main chance would seem to be if the Light and Love Home- Vancouver vote collapsed for some reason. However, it looks like it has been fairly consistent up till now.
At the moment, with 1 hour less than 18 days gone
Light and Love Home- Vancouver has 11086
and
National ME/FM Action Network has 2086.
A gap of 9,000 exactly or approx. 500 per day (it would be exactly if one rounds to 18 days).
These are average daily votes of 616 and 116 (although we know that the National ME/FM Action Network vote has picked up a little in the last few days).
Making up 9,000 votes over the remaining 57 days, means getting an average of 158 votes more than Light and Love Home- Vancouver every day.
If Light and Love Home- Vancouver remained consistent, that would mean 774 votes per day would be required.
Also, even if the National ME/FM Action Network were to gradually get more votes, it would be getting less than 774 for a period so would need to average more than that over the remaining days.
If however Light and Love Home- Vancouver brought in more votes, the number would be bigger than 774.
It all looks very hard.
The main chance would seem to be if the Light and Love Home- Vancouver vote collapsed for some reason. However, it looks like it has been fairly consistent up till now.
Hi vivint supporters
I was thinking how to get more votes. I think this thread read only a few people. I think a lot of PR users just arrive here, they are searching about some specific informations like treatement, xmrv,...so they dont visite this section. Maybe we could send a notification to everyone. I am going for some days to have small holidays in countryside but then I could do it. What do you think about? do you know if it is possible to send a common notification to all PR members?
Maybe like this we could cath some people.
I just checked the results of canadian organisation - after a small increase of numbers - last 2 days they got less votes than 2-3 days before. Strange after the campaign.
I was thinking how to get more votes. I think this thread read only a few people. I think a lot of PR users just arrive here, they are searching about some specific informations like treatement, xmrv,...so they dont visite this section. Maybe we could send a notification to everyone. I am going for some days to have small holidays in countryside but then I could do it. What do you think about? do you know if it is possible to send a common notification to all PR members?
Maybe like this we could cath some people.
I just checked the results of canadian organisation - after a small increase of numbers - last 2 days they got less votes than 2-3 days before. Strange after the campaign.
Hi vivint supporters
I was thinking how to get more votes. I think this thread read only a few people. I think a lot of PR users just arrive here, they are searching about some specific informations like treatement, xmrv,...so they dont visite this section. Maybe we could send a notification to everyone. I am going for some days to have small holidays in countryside but then I could do it. What do you think about? do you know if it is possible to send a common notification to all PR members?
Maybe like this we could cath some people.
I just checked the results of canadian organisation - after a small increase of numbers - last 2 days they got less votes than 2-3 days before. Strange after the campaign.
Hi Tuha - I don't know if it's possible to send a mass notification but I'd be reluctant to do it, I must admit - I'd feel like I was spamming (albeit in a good cause!). I have considered a more targeted PMing of people who I can see post frequently about XMRV (and hence ought to be interested in funding WPI) but who don't have Vivint signatures (which might suggest they're not voting in the contest, though not necessarily). I've been a bit reluctant to do that too, for fear of putting people off.
Maybe I am being too much of a shrinking violet! But at the beginning of Round 2, I noticed that lots of people on this thread had got Vivint signatures but only about 5 out of about 50 people posting on the top four active XMRV threads had one. I posted a (very polite!) pro-Vivint message on the most active thread saying how strange it seemed to me that they were so interested in XMRV research yet had no signatures promoting Vivint, begging them to get a signature and start voting. Although that thread had been getting several messages a day, I appeared to kill it stone dead for a couple of days, after which messages resumed as though I had not said anything! No-one mentioned my message and no-one got themselves signatures (I went back to the thread several times to check that week). They just started up with their passionate discussion about XMRV again as though I had been a ghost passing through.
Unless they are all voting already but not interested in talking about it, there seems a real disconnect between wanting the latest XMRV research from WPI but not being willing to do a small thing to help get it. So many people came to Phoenix Rising because of XMRV so there ought to be tons of Vivint voters. How to fix that disconnect without understanding what is causing it is a real problem.
Votes from midnight eastern time/10pm Mountain time last night - incl. increase over previous 24 hours.
Pacific:
Whittemore Peterson Institute: 17637 + 990 = 18627
Be Perfect Foundation: 7565 + 290 = 7855
Conejo Valley Friendship Circle: 6325 + 146 = 6471
Surfers Healing 4979 +187 = 5166
Canada:
Light and Love Home- Vancouver 10615+588=11103
Saint John Regional Hospital Foundation 5017 + 177 = 5194
6th: National ME/FM Action Network 1943 + 150 = 2093 (they have still not gone over 200)
Overall (groups ahead of the WPI):
Foundation for Angelman Syndrome Therapeutics (FAST): 41143 +2803 = 43946
Team Sanfilippo Foundation: 40598 + 2706= 43304
CHERUBS: 27763 + 1389 = 29152
International Rett Syndrome Foundation 20236 + 1359= 21595
Journey 4 A Cure Inc 18953 +1429 = 20382
Humm... good questions. I'll start with the last one. Perhaps asking the question on the XMRV thread? Mention the contest, how they can help move the research along but they don't seem to be voting and ask if they would come to this thread and explain to us why not. Make sure they understand we won't judge them, we just want to understand their reasons. (And if they come make sure we don'tjudge them!!)
As for the mass notification, some people may not be getting the message. Not everyone comes here very often. They may not know about the contest and it directly impacts them no matter which organization they would choose to support. Therefore, I don't consider this particular thing spam. You aren't pushing vitamins.
I do think however that Cort should be the one to do this. And information on both charities and how to vote for each should be included with no preference given to either. It should also note that people can come here and read this thread and discuss it and get help if they are having trouble voting or want more info.
Aileen