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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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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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    My pleasure! :D

    That said, I've just done four of them in 36 minutes and I am beginning to understand why our community is so hard to get going in one direction! It's a bit fiddly and time-consuming to get in touch with each separate group. So far I've done four and have had to sign up to each group, write a note to most of their moderators to explain why I want to join, do that thing where you type in the wobbly letter code to show you're not a robot, and for half of them I've got to wait for a confirmatory email to let me post anything!

    We need something like Batman has - some big Batsign that we can shine up on the sky where everyone can see it so we can get some concerted action! Holy obstacles, Batman! :headache:
  2. Sasha

    Sasha Fine, thank you

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    If anyone wants to use my text to get more supporters, please help yourselves! The CFS yahoogroups that I've filtered in size order mostly seem very inactive (no posts for days!) so I'm going to spread my wings to autism and other stuff that WPI are interested in, in which case I'll edit my message appropriately. Here's my text:

    Help get $100,000+ for free for Whittemore Peterson Institute - daily mouseclick

    Hi my name is Sasha and I usually post on the Phoenix Rising ME/CFS forum but theres an important opportunity for free money for the Whittemore Peterson Institute that needs all our support no matter what forum were on! I hope you dont mind me posting here.

    Im sure youre all familiar with the WPI and their retroviral research on XMRV and ME/CFS they are also about to open a state-of-the art medical facility, treating patients based on the lastest research. They aim to teach other doctors so that wherever we are in the world, we can all benefit from the latest science. What a dream after all these decades of neglect!

    A company called Vivint is running a charitable giving contest which started on June 14. The charity that gets the most votes via Facebook(takes minutes to open an account!) wins. Everyone, anywhere in the world, can vote, even though the charities themselves are all North American.

    WPI is currently in 1st place in its region and will win $100,000 if it holds the lead. If it wins most votes across all five regions it will win $250,000 and its currently in 4th place overall.

    Here is WPIs link: http://www.vivint.com/givesbackproject/charity/769

    Please, please join us in helping WPI hold its regional lead and get a shot at the national! A thousand of us are voting every day. WPI are already strong but we all need to get behind them other charities are trying hard too. Wed never raise this sort of money through donations and the research that it could fund could change all our lives.

    The contest runs until August 27th. You can sign up on Facebook for a daily reminder to vote, here. http://www.facebook.com/event.php?eid=121179681298558
    You could also set up your Microsoft Office calendar to remind you to vote every day.

    Lets get voting!
  3. Dolphin

    Dolphin Senior Member

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    :D Don't forget to save you're little description about why you want to join so you don't have to re-write it each time. After a few posts on the Facebook groups (I think this was mainly CCG), I was faced with a captcha each time. The FB ones are two words. Anyway, hopefully with the yahoogroups, you are "boldly going where no 'man' has gone before" (to plug Vivint) and will get some new voters.
  4. Sasha

    Sasha Fine, thank you

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    Good idea about saving the description!

    I hope it does drum up some new punters - hard to tell how active the groups are. Some have several thousand members but no postings in several days!
  5. Dolphin

    Dolphin Senior Member

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    Yes, I wouldn't count on several thousand seeing them on any one list. I wrote to a list which was pretty dead (and it was a bit cheeky of me to do it as it wasn't exactly on topic!) and with one of the messages I said "don't worry, I won't write daily"/similar (I'd sent messages a few days in a row) and two people said they would like daily reminders. I decided I couldn't send the message to everyone just because of that so I just forward the event reminder to them, but if those two turn into regular voters, it'd be good. In this one, we don't need huge numbers to make a difference. And you never know where you can be lucky. We're also raising awareness about the WPI - the odd person may donate now or at some stage in the future.
  6. helen41

    helen41 Senior Member

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    I continue to vote, and trade votes online. I'm not feeling well, and haven't had the brain power to look into running my own contest for votes. I'm sorry, I just don't have it right now, I'm at my upper limit.
    Has anyone thought of partnering with a group in the Pepsi Challenge? Maybe we could help an animal shelter or something and they could help us back. The candidates are dissimilar from out group, but maybe it would be a way to get those extra votes http://www.refresheverything.com/leaderboard
  7. Sasha

    Sasha Fine, thank you

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    Sorry you're not feeling well, Helen - these competitions can be tiring in and of themselves! Something else always has to give. Take care of yourself!
  8. Sasha

    Sasha Fine, thank you

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    Just did today's daily vote and it's good news - WPI are not only holding position but Conejo appear to have stalled! Since Dolphin's last count yesterday of 5,117 for WPI and 3,566 for Conejo, today it's 6,227 for WPI and 3,617 for Conejo - we're up 1,110 and they're up 51!

    Maybe they have a big lie-in on Sundays and don't do much - it will be interesting to see what happens today. Let's keep voting!

    :victory::victory::victory:
  9. Dolphin

    Dolphin Senior Member

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    V. Good news: after the Conejo Valley Friendship Circle previously going up in pacific fairly rapidly, and then slowly down a bit on Saturday, they almost came to a complete stop on Sunday:
    Whittemore Peterson Institute: 5117 + 1029 = 6146
    Conejo Valley Friendship Circle: 3566 + 49 = 3615

    They still need to be watched - I'm not feeling fully relaxed just yet.

    Good that the WPI got 1000 votes in a day again. If we can keep putting on the votes, even if groups make a charge, it'll be hard to make up the gap if we've built up a substantial lead in pacific. And we can always hope that the top 3 start slipping back.

    Attached Files:

  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Try to look at the bright side 967 votes is very close to 1,000!

    GG

    PS Keep up the good work troopers!!
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Massachussetts CFIDS sent out an email about a day ago. Has any other org done that?

    GG
  12. Dolphin

    Dolphin Senior Member

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    Just a little background: the WPI was getting a fairly steady 1050 or so. And then when one sees Conejo Valley Friendship Circle getting 1296 in a day, one wants to see the gap (to 1296) narrow - a change (decrease) of nearly 100 is quite a lot in that context. Anyway, for whatever reason, the Conejo Valley Friendship Circle vote has collapsed so the WPI is looking good again.
  13. Dolphin

    Dolphin Senior Member

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    The Irish ME/CFS Association has sent out E-mails, are flagging it on its website: http://irishmecfs.org/index.html and a text was sent out at the start of the month directing members to the website for instructions.
  14. Sasha

    Sasha Fine, thank you

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    Just did today's vote - we're doing great in the Pacific - Conejo & Be Perfect in the dust! And holding 4th place overall.

    I think that what has happened to Conejo (a collapse from about 1000 votes/day to 50!) shows how fast things can change and possibly how much the psychology of groups matters. Perhaps the other Pacific groups got demoralised by the WPI's strong position - and perhaps the overall leaders will get complacent due to their current lead. It really is a stamina contest - and fortunately for us, stamina of resolve rather than physical stamina!

    All to play for!
  15. Francelle

    Francelle Senior Member

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    VIVINT VOTING

    I have been thinking that there must be some way that our large worldwide community of M.E./CFS/Fibromyalgia patients (and allies) could put aside their partisan factions in an effort to make an all out effort to help raise money for M.E. research by voting with one accord for the only real M.E. runner in this race.

    I am sure that Angelman and Sanfilipo Syndromes are no more prevalent than M.E., just as I am sure that the Angelman and Sanfilippo Syndromes patient organisations must also have differences of opinions among their ranks yet from all accounts it looks like they are pulling out all stops to vote for their respective Foundations which provide research and therefore hope for sufferers of these conditions.

    This does not mean that I am not very encouraged that the WPI is doing so well in their region :thumbsup: altho voters must not rest on their laurels, but it would seem to me that we could be doing better overall considering our numbers!

    Am I misguided? How is my thinking screwed? :headache:
  16. Dolphin

    Dolphin Senior Member

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    Yes, there should be more potential there.

    The WPI got around 9,000 votes in Round 2 of Chase Community Giving. That's 9,000 separate individuals. If any of the top groups were getting more than that per day, I would say the chances of topping that would be small as there was a big effort in Chase Community Giving. However, they're only getting in the region of 2000. Of course, some of the 9,000 CCG voters weren't going to be regular (daily) voters. But the sort of figures that are required shouldn't be impossible.

    P.S. I like your .sig
  17. Francelle

    Francelle Senior Member

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    This link: http://www.mecfsforums.com/wiki/Organizations_for_ME/CFS is a list of various M.E. organisations throughout the world. Not too sure how up to date it is nor how complete but I'm fairly positive many would still be current.

    Perhaps people could contact some of these organisations with a well crafted, persuasive email outlining all the facts, to encourage some votes. The young people ones like AYME in the UK would be good as young people spend a lot of time on facebook lol!
  18. Dolphin

    Dolphin Senior Member

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    (alluded to above)
    V. Good news: after the Conejo Valley Friendship Circle previously going up in pacific fairly rapidly, and then slowly down a bit on Saturday, its vote has now collapsed for two days in a row:
    Whittemore Peterson Institute: 6146 + 1082 = 7228
    Conejo Valley Friendship Circle: 3615 + 59 = 3674

    Be Perfect Foundation is now back up to 2nd place in Pacific:
    3433 + 482 = 3915

    Good that the WPI got 1000 votes in a day again. If we can keep putting on the votes, even if groups make a charge, it'll be hard to make up the gap if we've built up a substantial lead in pacific.

    These are the figures for the top three (WPI is still in 4th) overall:
    Foundation for Angelman Syndrome Therapeutics (FAST): 10199 + 2261=12460
    Team Sanfilippo Foundation: 10084+2275=12359
    CHERUBS: 9439+1889=11328

    We can always hope that the top 3 start slipping back.

    Attached Files:

  19. Sasha

    Sasha Fine, thank you

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    That's great info, Francelle - thanks for that - I will start in on the list this evening. I will be making liberal use of Google translate!

    Top signature, by the way! Love it!
  20. Sasha

    Sasha Fine, thank you

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    Thanks again for the analysis, Dolphin - hugely helpful - and I agree we can realistically hope that the top three will get over-confident and start slipping! Plus I hope we will keep gaining votes.

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