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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Put Some Gas in ME/CFS Patients Tanks: Help Two Non-Profits Bring Home 5K in Citgo Refueling Contest

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 18, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog
     
    Little Bluestem and Merry like this.
  2. Merry

    Merry Senior Member

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    Thanks, Cort, for the article.

    Because CFS Knowledge Center got a late start in the contest but now is out-performing CFS Solutions, I wondered in the Citgo contest thread how the organization was managing to bring in those votes. Nielk responded that the organization emails members daily to vote. She went on to say, "This is apparently effective and would be nice if it could be duplicated by PR's e-mailing system for all ME/CFS charity contests." Any chance that emailing reminders to vote could be set up on Phoenix Rising? Thank you.
     
    ggingues likes this.
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I have been voting on this daily. If at all possible, this kind of funding would be helpful to me.;)

    GG
     
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I am in favor of anything that will help members support the organizations that support us, however I would like an option to opt out of e-mail reminders. I check my e-mail only once or twice a week and would not like to find a bunch of mostly outdated reminders.
     
  5. Mark

    Mark Acting CEO

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    Thanks for the suggestion Merry. We're looking into technical solutions for this - obviously we don't want to spam people who don't want frequent emails, but I think we'd ideally like to promote a separate 'mailing reminder' service, perhaps generically for people interested in contests like these. We can also do more to be consistently on top of the contests and get our article posting, notices and emailing well co-ordinated. I'm sure there will be plenty of volunteers to help out with that particular team and I expect what we want is a dedicated team dealing with contests. I doubt very much we will be able to set up anything in time for this particular contest, which ends in 10 days, but watch this space: we will be recruiting for some new teams of volunteers very soon...
     
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Hmm, I thought this already existed? Or perhaps that was with the old forum?

    GG
     
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Sounds fair, but the emails that Dan's website is sending out are rather obivous on their contents, it's in the subject line. So if you saw a few, you could just delete them, right? I can with the website I use for my email. FYI

    GG
     
  8. Merry

    Merry Senior Member

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    Thanks, Mark. I wasn't thinking that you could set up an email system for this contest. Sorry for not making myself clear. Some time in the future, if such a system is feasible and doesn't annoy members.
     
  9. Aileen

    Aileen Senior Member

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    You already have what you need to do this. The admin simply sends an email to members. When we log in and point to our name, a drop down box appears. In the list is "Privacy". If one clicks on that one will find the following (2nd from top):
    Receive site mailings
    You will receive a copy of emails sent by the administrator to all members of the site.
    You simple click on that to receive notices. If you don't want to receive notices, such as about the upcoming Aviva Community Fund (hint - Canada needs your support!!), you don't check it.

    And you don't necessarily have to do this for every contest, just the bigger ones. You could have a policy of simply announcing the smaller ones, once, so everyone knows about them and provide a link to the appropriate thread. That way people who are interested can choose to follow them but they won't miss the information. For the few large ones like Chase, Aviva push them every day.
     
  10. Mark

    Mark Acting CEO

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    Unfortunately, it's not that simple. For very complicated reasons (mainly historical, and not really PR's fault in any way) which I won't go into right now, using that method of e-mailing results in an increase in the level at which we are registered as spammers by some spam-filters. That in turn results in an increase in the number of new forum members who find they can't get in to the site because our confirmation emails are blocked as spam. So we don't use those kind of site mailings.

    What we do use is a separate email service - used for the monthly newsletter which you can sign up for on the main website (Home tab from the forums, top left). We haven't had enough resources to keep that up on a monthly basis recently, but we are very much working on that. There will be a recruitment drive soon - watch this space - and we'll be ramping up the newsletters soon too.

    But for these contests, what I think we need is a dedicated email list for people who do contests, that sends daily reminders whenever there's a contest on. We're looking at a separate technical solution for that scenario and I hope we'll have something in place by - I would estimate - early next year. How soon it happens will depend on how many people step forward to answer the call for volunteers...we're pretty much there now in terms of being set up behind the scenes to support and manage a large team, so hopefully many hands will make light work...
     
  11. Aileen

    Aileen Senior Member

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    Spammers!!! Not my favourite people. So they are the reason for this (wouldn't be spam-filters without them). :mad:

    Are you referring to human resources or money or both?

    Not so sure about this. Those of us who do contests tend to keep a close eye on the fundraising threads. But when there is a big contest, like Chase or Aviva in Canada, or a really important petition that needs signatures or some sort of action, I think it is important that everyone be informed about it. Some people don't want to get involved in a lot of contests but will for the really big ones and the same thing for advocacy efforts. But these people probably don't watch the fundraising/advocacy threads as a rule. So...unless there is a direct notice of some sort, they miss it. That is why I don't think a dedicated list will be of much use.
     
  12. Mark

    Mark Acting CEO

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    In this case, human resources. We need more volunteers; we need a bigger team if we are going to organise things like this. At the moment, a small group of us are doing as much as we can. I'll be launching an appeal on that front soon. We need to build a fundraising team, an advocacy team, a content team and more. We've tried to do that in the past and we've had a few volunteers, but we have tended to fall down through not finding somebody prepared to organise those teams. I am hoping that a group of members - from this thread and elsewhere - can get together, with one or two people co-ordinating the group, and basically do the same sort of fundraising, campaigning and writing work that you do on the forum threads, but in a slightly more 'official', organised way. Anybody who is interested in being a member of that team, please contact me by Conversation. If we don't get enough volunteers to do it, it won't happen.


    We put out articles, forum threads and notices about fundraising contests; that's our main way of trying to reach 'everyone'. We have a mailing list of people who have signed up for a 'monthly' newsletter, and we can and do publicise contests within that as well, but lately we haven't been managing to get that out every month. But in terms of publicising contests, I'm not comfortable with sending out daily reminder emails to thousands of people who signed up for a 'monthly' newsletter. We can use the routes we currently have to publicise contests and to encourage people to take part in those contests - and perhaps we could be a little more organised in doing that than we have been - and we could encourage people to sign up for an additional mailing list specifically for contest reminders (including daily 'vote today' reminders), but I don't think we can be spamming people every day just because they signed up for our 'monthly' newsletter.
     
  13. Cort

    Cort Phoenix Rising Founder

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    This is the last day and ME/CFS Community Center has just fallen, believe it or not, out of the winnings! (ON THE LAST DAY ACH!!)

    The good news is that they're very close :cool: - so lets vote and get 5K in free gas out to the ME/CFS Community - and notch another win for the community in a non-profit contest...:ninja::ninja:
     
  14. Enid

    Enid Senior Member

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    OK Cort - we keep rooting here (and voting).
     
  15. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    What is the "ME/CFS Community Center"?

    GG
     

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