1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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The BIG CHASE: funding US ME/CFS non-profits

Discussion in 'Action Alerts and Advocacy' started by Frank, Dec 1, 2010.

  1. Dolphin

    Dolphin Senior Member

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    I've done a large amount of the medium- and larger-sized FB groups (I don't know how many - it seems like it could be 150 but that might be an exaggeration - I try to spread them out, maybe 2 or 3 every hour as don't want to be seen by FB as a spammer; no problems so far).

    The ones I haven't done are generally the smaller ones and the ones where one has to request to join. Two reasons: I've been going for quantity (trying to do them quickly before getting back to work) and I'm not in their countries (sometimes, but not always, the language is not English - I've posted on around 2 dozen Spanish sites that didn't require a request to join). So if people are searching Facebook and see ones that are "request to join'", I haven't "got" them.

    Also, I've only done some languages which I have some knowledge of or can guess a bit from knowledge of other languages and a quick Babelfish translation of the group's aims e.g. Spanish, French, German (only did 2 - can't find more), Italian (only did 4 - can't find more; there were 2 more "ironic" ones I didn't post on), Dutch as well as English language groups.

    Of course, people can also contact "real" (non-FB) groups as some of their members could be E-mailed or even instructions put in the newsletter (if timing is right) or sheets handed out at a meeting (I'm in the early stages of trying to do the latter here). They might also have their own FB group also including ones I haven't posted on.
    And of course if the group posts a second message on their own FB page, they won't get "in trouble".
     
  2. frenchtulip

    frenchtulip Senior Member

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    Thanks for all your hard work, Dolphin!

    I've been working on a vote swapping site trying to get votes from contestants in a big contest. I voted for sooooo many--have no idea how many--the contest ends today. I don't know if I'll get payback votes, but am hoping.

    The CAA has fallen to 19th place. I hope some votes start coming in fast.
     
  3. Dolphin

    Dolphin Senior Member

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    Thanks frenchtulip. Well done for what you are doing. If you could give us an idea how many payback votes you think you got, it would be interesting.
     
  4. SpecialK82

    SpecialK82 Senior Member

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    Justin - love shaving your head idea! :D It's such a fun way to get everybody involved and friends will really have an incentive to pass it around! I think it's better than offering money when you get well because this is an immediate reward. You have my mind racing on ideas I can do too!
     
  5. Dolphin

    Dolphin Senior Member

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    There was one teenager here (around 17/18) who saved her hair for ME/CFS! Her father has the illness many years.

    In another place, five guys including the brother of a young woman did a range of things including having their hair shaved and/or waxing their legs and/or back!
     
  6. frenchtulip

    frenchtulip Senior Member

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    Dolphin, I have been working for the CAA since they have been slipping in the standings. Thurs. night I did a lot of work on www.getvotesonline.com posting for contestants in a variety of contests. The CAA was at about 660, I think, and the votes surged shortly after that. I estimate that between 40-60 votes came from my swaps that night. Last night I realized that contestants in the Crate and Barrel Wedding Contest were extremely numerous and it was so easy to vote. It was however the last night of the contest. I voted for everyone, even if they had relatively few votes. I hoped they would at least seem my note that I had voted for them and hopefully return the favor. The CAA was at about 790 when I started, I think, and the CAA is only at 806 last I checked. From the pictures of recent voters early this AM I'm sure that at least some of the wedding contestants voted, but I doubt that all 16 votes since last night were from my swaps.

    Unfortunately, the Crate and Barrel contestant info at getvotesonline has been taken down, so most of the contestants will never see that I voted for them. I knew it was a longshot to vote on the last night for couples who didn't have too many votes and also for couples who fell short of winning, but I thought they would at least see that I had voted for them. If they are regulars on that site, I thought they might just return a vote.

    I find www.voterequests.comxa a bit more difficult to use, but they at least keep their expired contest info online.

    Today I will do some work on contests that expire in the early days of May.
     
  7. Dolphin

    Dolphin Senior Member

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    Great work. Maybe I will join you in Round 2 - have other work I really should be doing (as Hope123 can testify) but I have a tendency to get sucked in to these things! Also some of it isn't too mentally taxing so can be a bit of a change.

    By the way, I think the link is www.voterequests.comxa.com . At least that link works while the one you posted doesn't.

    100th position did jump up a bit there for a few days e.g. doubled, but rather than accelerate, it hasn't appeared to, which surprises me. So I think that the chances of CAA not making it in round 1 are small but best not to leave it too late/not to take any chances.
     
  8. frenchtulip

    frenchtulip Senior Member

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    You are absolutely right about the link www.voterequests.comxa.com. Thanks for the correction. Yes, I think it's worth working on these vote swapping boards. I'm gaining a little experience about the do's and the don't's.

    Here's a P.S. I just checked and the CAA has jumped 25 votes in the last hour or two. In the pictures of the last 10 voters, I see 3 and possibly 6 of the contestants I voted for last night. So maybe some of the contestants had the features on their pages set so that they would receive emails showing comments or requests that were made there before the contest ended and were removed from getvotesonline. Am keeping my fingers crossed that there may be some more votes come in from the swaps.

    Oh, just checked again and another vote from a cute couple I voted for. I'm hoping that many of the people I voted for have their features set to receive emails about any comments made on their pages. I never thought I'd get so excited about vote swapping.:)
     
  9. Dolphin

    Dolphin Senior Member

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    :victory:
    That's great. Yes, I saw a jump a few hours back - was going up very slowly - so probably from your help (and of course you have some definites you know about). Each vote will be worth a lot in round 2 so getting quite a few is great.
     
  10. Dolphin

    Dolphin Senior Member

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    Only deletion/negative comment I've come across from spamming lots of FB ME/CFS/FMS/MCS/GWI groups*:

    I'm 95% sure I wrote on this one as with a membership of 592 it would have been very attractive:

    "Count me in" has been on a few groups so there is a chance that they had one. But of course voting in Chase Community Giving is free and the first word in my messages is usually "free".

    Anyway, there is a note on April 20 from somebody else so not the end of the world.

    * there could be more - haven't gone back to most.
    Also I generally haven't done FMS-only/MCS-only/GWI-only groups.
     
  11. frenchtulip

    frenchtulip Senior Member

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    Dolphin, that's great that there has been only one deletion/negative comment. I'd say that's really great! And maybe some of those 592 members belong to other groups which are more responsive and they'll help any way.

    The CAA is at 834--hasn't moved much. I do hope we can get more votes, although Round 2 is the really important voting period.
     
  12. Dolphin

    Dolphin Senior Member

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    frenchtulip: thanks and well done again.
    ----
    It looks to me that "WILDLIFE CENTER OF VIRGINIA" will pass out the WPI before the end of Round 1, putting the WPI in 5th.

    Also, it looks quite likely that the CAA will drop out of the top 20 (page 1): GLASSMEN JR DRUM & BUGLE CORPS INC have already passed them out putting them in 20th and it would only take one of the ones below to make a bit of a charge. Anyway once it's in the top 100, that's the main thing.

    I noticed on the DRUM CORPS INTERNATIONAL INC page when I had a quick look that they were calling people to vote for the GLASSMEN JR DRUM & BUGLE CORPS INC again - for a while they thought they were ineligible.

    So that's a pairing that will probably help each other. The wildlife ones will also probably help each other. I was thinking that the WPI looked good to get over $100,000 in Round 2 but I'm not so sure anymore; time will tell whether the vote can be got out. But at least 6-10th all give $100,000.
     
  13. beesknees

    beesknees Senior Member

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    Yes, I am pretty concerned about the Wildlife Center of Virginia beating the WPI in round two. I thought we were pretty secure in 4th place. They are only about 200 votes behind the Whittemore Peterson Institute now.

    I saw the posted by someone who voted for Lungevity- a lung cancer charity "As much as I believe in all the drum corps that are filling the top 100, and I do, I believe more in funding lung cancer research and ending lung cancer forever! We desperately need to bring lung cancer research out of the shadows of being the least-funded of all cancer research, and treat lung cancer like the killer that it is! Please help vote Lungevity.org to the top of the top 100 and help end the biggest cancer killer. "

    I thought she said it very kindly and exactly what I was thinking except with CFS. It's a a shame that Lung cancer doesn't make the top 100 and bugle corps does. I think people dying and suffering trumps drummers. Hope that doesn't sound bitter or harsh. I just don't want to be sick another 20 years!!!!
     
  14. Dolphin

    Dolphin Senior Member

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    I think GLASSMEN JR DRUM & BUGLE CORPS INC may also be a threat in Round 2. For example, they've gone up by over 100 in less than 2 hours since it was last updated. As I said, it looks like they (and/or Drum corps) thought they were ineligible for a while. But when they got the all-clear (or perhaps they just hope they are eligible), they started going up quickly. If they got most of the 4730 that the drum corps are getting, that would be a lot. They may not get close to Drum corps in Round 1 of course because of what happened but Round 2 is the important one.

    Of course, perhaps they and some others will not be eligible (and that would mean they wouldn't even get the $25,000) - that'd be a bummer for them.
     
  15. Dolphin

    Dolphin Senior Member

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    Knowing a bit about them e.g. got a DVD off them before, been on their website a few times, I'm fairly sure (99.5%) they weren't going to meet the eligibility criteria of having a turnover of $1m or more. So they may have got themselves taken out of it or the organisers might have done it.
     
  16. Dolphin

    Dolphin Senior Member

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    FWIW, I found out that I'm now a member of 105 groups (think they're all ME/CFS-type groups) and have 74 interests (all but a handful are ME/CFS - one has to "like" some pages to post on them) so posting requests on 150 or so looks like around the amount I did.

    Anyone else got any feedback on successful/unsuccessful strategies? (I have little idea how much difference what I did on Facebook made - on most of the pages, it wasn't "liked" which makes me think that nobody on lots of the groups voted).

    Any responses good/bad received from e-mailing local/regional/state or national groups?
     
  17. frenchtulip

    frenchtulip Senior Member

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    I don't know how many ME/CFS groups I now belong to on Facebook. I don't know if my posts made any real difference, but one lady in an Ontario group let me know she had voted. I probably emailed between 100-150 organizations in other countries promoting the WPI. I don't think I heard back from a single one. Several groups in England have a close alliance with the WPI and probably voted because of that, not because of my emails or posts. The groups on Facebook are the most likely to vote, I think, because they are familiar with the set-up. I had the best luck with the swapping of votes for the CFIDS Association. I think I will do that again in Round Two. I think it's worth posting on ME/CFS groups on Facebook--U.S. groups and non-U.S. groups. You never know how many may have voted because of posts--even if they didn't "like" what was posted.

    Hopefully, the WPI can stay in line to win $200,000 in Round Two and the CFIDS Association can win at least $20,000. The top 25 will win money. The competition will be keen, and I expect major voting alliances between music groups and the like.
     
  18. Hope123

    Hope123 Senior Member

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    Thanks for doing all that Frenchtulip and Dolphin! I was wondering how things were doing on the international and FB front.

    I see on Sat, WPI Facebook page says they sent out a reminder to people to vote -- they have 3,700 members on FB and 15,000 on Causes yet only 2,700 or so votes. WPI thinks the e-mails are not being received by people for some reason and ar working on it. Anyhow, I hope this is just people not voting because WPI is pretty well-assured of a spot in the top 100 and that more people will come out to vote Round 2.
     
  19. glenp

    glenp "and this too shall pass"

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    link isnt easy

    The link to the page to vote isnt often posted so people have trouble getting there
     
  20. Frank

    Frank Senior Member

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    The first $50 000 for ME/CFS, we're almost there!
     

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