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Thread: I want combo trials, and now!!

  1. #201
    Senior Member 0xSquidy's Avatar
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    Quote Originally Posted by Leif View Post
    cc neads to put cure ppl first! Not lazy butt moderators.
    Ditto.
    Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

    Fenexy: Proyecto Volver a Caminar

    http://www.fenexy.org (soon in english too)

  2. #202
    Senior Member lynnifer's Avatar
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    ... never mind ...

    I have submitted my resignation as moderator. I have also cut all ties to CareCure on my Facebook page. Sorry, but it's time for me to move on.

    Tired of the snarky, snide and unnecessarily rude comments on here. Good luck all.
    Last edited by lynnifer; 05-01-2010 at 09:25 PM.
    http://en.wikipedia.org/wiki/M%C3%BC...en_by_Internet

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #203
    Sigh. Now the newcomers get a first-hand look at the reason the old advocates learned to stay a step away from CareCure. I was beginning to hope things had changed. Somebody always gets their feelings and opinions stomped on, be it through excessive enthusiasm, paranoia, secret agendas, personal vendettas or whatever. This puts a bad taste in my mouth and gives me deja vu as well.

    Lynnifer, you know you can resign as moderator and again enjoy the bliss that is the Ignore Function, right? I fully enjoy that feature that I wasn't allowed to use when I was a mod. Also, as a non-mod, you are once again allowed to defend yourself and your beliefs as opposed to rolling over and taking all the crap random jerks dish out. Believe me, it is glorious.

    Leif-What. The. Fuck? You're gonna sober up and regret that. There aren't enough good ppl for you to go around alienating the ones participating in the convo! And you know perfectly well that the mods work hard, for free, for all our benefit. By definition, there are no lazy butt moderators...if they were lazy, they'd keep their free time for themselves. And without mods, there is no CareCure AT ALL. All those potential advocates worldwide, gone, the day the mods give up. Think about it.
    Last edited by betheny; 05-01-2010 at 11:27 PM.

  4. #204
    Going back to the idea of recruiting new CC members, it seems to me the obvious way is to make the various rehab centers around the country, and the people who work there, aware of CC so they can tell the newly injured about the site.

    For example, I started posting a while back at allnurses.com. That site has a forum for rehab nursing, and I promote CC there at any opportunity I get. There was also a thread a few months back in the general nursing forum called "What I Learned from My Quad Patient" in which I posted about CC. In response, several nurses wrote me that they were so glad I made them aware of this "incredible resource" and assured me they would tell all their SCI patients about it.

    With some targeted email and even snail mail outreach (e.g. sending a flyer about CC and asking that it be posted in patient areas and on staff bulletin boards (according to every nurse I've talked with/nursing blog I read, there's one in every women's staff restroom at health care facilities), we can start to reach some of the new SCI/Ds out there.

    Lynnifer, I'm sorry. You will be missed.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  5. #205
    Quote Originally Posted by Leif View Post

    cc neads to put cure ppl first! Not lazy butt moderators.
    WTH?? leif, get lost. i haven't read your posts much for a long time. i don't come here like i used to either. lynnifer, don't leave over ppl like this and ox whatever (whoever that is). although, i can't blame you. i only know about this thread from a pm and i haven't the stomach to read it.

  6. #206
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    Quote Originally Posted by Wise Young View Post
    ... There is no problem with shortage of subjects in China. In the meantime, I am heading to Norway at the end of May to discuss the possibility of clinical trials there but I must emphasize that Norway may want to test their own therapies and not become a mirror of ChinaSCINet or SCINetUSA. I would do everything that I can to help them.

    Wise.
    Thank you Dr. Young, -we will do our best, and might I suggest, you can move over here, -I personally will buy a house for you -a small one that is, since you will have to be busy with the others : )

  7. #207
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    Quote Originally Posted by betheny View Post
    Sigh. Now the newcomers get a first-hand look at the reason the old advocates learned to stay a step away from CareCure. I was beginning to hope things had changed. Somebody always gets their feelings and opinions stomped on, be it through excessive enthusiasm, paranoia, secret agendas, personal vendettas or whatever. This puts a bad taste in my mouth and gives me deja vu as well.

    Lynnifer, you know you can resign as moderator and again enjoy the bliss that is the Ignore Function, right? I fully enjoy that feature that I wasn't allowed to use when I was a mod. Also, as a non-mod, you are once again allowed to defend yourself and your beliefs as opposed to rolling over and taking all the crap random jerks dish out. Believe me, it is glorious.

    Leif-What. The. Fuck? You're gonna sober up and regret that. There aren't enough good ppl for you to go around alienating the ones participating in the convo! And you know perfectly well that the mods work hard, for free, for all our benefit. By definition, there are no lazy butt moderators...if they were lazy, they'd keep their free time for themselves. And without mods, there is no CareCure AT ALL. All those potential advocates worldwide, gone, the day the mods give up. Think about it.
    All work for free, me included! I'm just so very feed up with naysayers. Sorry.

  8. #208
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    Quote Originally Posted by cass View Post
    WTH?? leif, get lost. i haven't read your posts much for a long time. i don't come here like i used to either. lynnifer, don't leave over ppl like this and ox whatever (whoever that is). although, i can't blame you. i only know about this thread from a pm and i haven't the stomach to read it.
    I don't care, but if you want to work for a sci cure, -do so. -Enough ppl here saying they don't believe in it or it will not help them! -You are a engineer so you should know where "I'm coming from." And that does not mean I don't care for ppl with terrible sci, -I just don't care for naysayers or for that matter, myself, -I'll live. We really have to fix this sci for the others not doing so good. I mean this, and I am seriously pissed by reading some cure comments here. Super pissed, I am. There has been enough bogous. I don't post much like life stuff in the life forums, but I have long known friends recently dead due to complications of sci, and none will stand in my way to ease this for others, none! And, actually, in some such ways, our friend DA is right. It is about time ppl understand we have to do something, something that can make a change. And I think we could, if we get serious about the issue. -This is personal, it is not about day-to-day politics and so on, it is personal. It is 100 percent personal.
    Last edited by Leif; 05-02-2010 at 01:55 AM.

  9. #209
    Quote Originally Posted by Leif View Post
    I don't care, but if you want to work for a sci cure, -do so. -Enough ppl here saying they don't believe in it or it will not help them! -You are a engineer so you should know where "I'm coming from." And that does not mean I don't care for ppl with terrible sci, -I just don't care for naysayers or for that matter, myself, -I'll live. We really have to fix this sci for the others not doing so good. I mean this, and I am seriously pissed by reading some cure comments here. Super pissed, I am. There has been enough bogous. I don't post much like life stuff in the life forums, but I have long known friends recently dead due to complications of sci, and none will stand in my way to ease this for others, none! And, actually, in some such ways, our friend DA is right. It is about time ppl understand we have to do something, something that can make a change. And I think we could, if we get serious about the issue. -This is personal, it is not about day-to-day politics and so on, it is personal. It is 100 percent personal.
    Leif, I take it you are not a people person? Calling people 'lazy butts' isnt going to help apart from alienating those who are already finding it difficult to soldier on with whatever little advocacy they are participating in. Maybe you are right about what needs to be done but you need to deliver the message in a more tactful way. Maybe you should leave the "motivational" speaking to others!

  10. #210
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    So everyone at CC is not perfect and we have fights. I personally regret that this fight, for lack of a better word, has occurred, and I hope Lynnifer comes back to CC. I think Lief has apologized as much as he can right now.

    But, for those CC members interested in doing something for a cure, we have to keep the bigger picture in mind and keep moving forward, knowing that there will always be disagreements when you try to accomplsih something that is very difficult.

    I hope CC members with an interest will keep posting what they want from the CC membership to accomplish in regard to a cure and what we should do to meet the goal. There have to be many more members of CC with this interest, and I personally want to hear from you as do others.

    Let's all try to keep this simple and big picture. If someone posts something you disagree with, let's try to resolve that later.

    Thanks for letting me take up your time.

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