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    Dennis' Survey

    I have received via e-mail the findings of the survey, presumably because I took part. I wonder if Dennis has thought to make these results known more widely on the Forum. (Sorry Dennis, if I've missed this and it's already more widely available).

    Many of the opinions expressed are bang on the nail, and should be a matter of great concern. I think they deserve wider exposure.

    I think too many of us are inclined to think that it's not worth bothering about, as nothing will happen. OK it's just a thought.
    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

    #2
    Originally posted by chris arnold View Post
    I have received via e-mail the findings of the survey, presumably because I took part. I wonder if Dennis has thought to make these results known more widely on the Forum. (Sorry Dennis, if I've missed this and it's already more widely available).

    Many of the opinions expressed are bang on the nail, and should be a matter of great concern. I think they deserve wider exposure.

    I think too many of us are inclined to think that it's not worth bothering about, as nothing will happen. OK it's just a thought.
    I think the survey it is interesting in many ways.

    After reading it the results I posted the following in my FB status:

    "I think it is true that many veteran SCIs block the path to cure SCI with their negativity.."

    I got the folowing comments:

    It was among the dumbest thing I ever heard! You must remember that although we once were new injuries and heard about heal.

    And also:

    Do not know if I completely agree with you. I think it adds too much unnecessary resources on fantasy cure of SCI when we instead should invest a larger portion to make life easier for SCI. Easier to use the toilet, shoulder problems, etc..but as I said, I am not opposed to science. However, one has to live the life you have and not get bogged down in fantasies.


    That proves that some "veteran SCIs" think a cure is just a fantasy so we shold not spend money for SCI research.
    These Veteran SCIs still lead most of the SCI orgs.

    That is the old dicussion care vs cure.
    I have heard many times that the SCI community should stay united and work together.
    I desagree!
    I don't see why I should work together with people that block the path to cure SCI. Thay are against me, I am against them.

    History is full of examples of "civil wars" that produced good changes.
    I am for an open battle aganst the "veterans SCIs" that block the path to cure SCI.
    Not all the veterans, JUST the ones that block the path.

    BTW I am considered a "veteran SCI" by many.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

    Comment


      #3
      Originally posted by paolocipolla View Post
      I think the survey it is interesting in many ways.

      After reading it the results I posted the following in my FB status:

      "I think it is true that many veteran SCIs block the path to cure SCI with their negativity.."

      I got the folowing comments:

      It was among the dumbest thing I ever heard! You must remember that although we once were new injuries and heard about heal.

      And also:

      Do not know if I completely agree with you. I think it adds too much unnecessary resources on fantasy cure of SCI when we instead should invest a larger portion to make life easier for SCI. Easier to use the toilet, shoulder problems, etc..but as I said, I am not opposed to science. However, one has to live the life you have and not get bogged down in fantasies.


      That proves that some "veteran SCIs" think a cure is just a fantasy so we shold not spend money for SCI research.
      These Veteran SCIs still lead most of the SCI orgs.

      That is the old dicussion care vs cure.
      I have heard many times that the SCI community should stay united and work together.
      I desagree!
      I don't see why I should work together with people that block the path to cure SCI. Thay are against me, I am against them.

      History is full of examples of "civil wars" that produced good changes.
      I am for an open battle aganst the "veterans SCIs" that block the path to cure SCI.
      Not all the veterans, JUST the ones that block the path.

      BTW I am considered a "veteran SCI" by many.

      Paolo
      So true about the vets!

      I see the whole division between cure and care as unhelpful. I would have thought that ideally, post rehab care should include on going work at achieving greater personal autonomy. Heavens knows, care already costs a mint, and I would be quite happy to cooperate in some ongoing project, albeit experimental!
      2010 SCINet Clinical Trial Support Squad Member
      Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

      Comment


        #4
        The whole care vs. cure debate is strange and even the name is of the debate is wrong. I would like to rename it the anti-cure vs. cure debate.

        The reasons for this is very simple.
        1. I never hear people who are in favour of finding a cure for sci argue against care.

        2. The people who are often called the 'care' group don't advocate care as much as they advocate against a cure.

        By letting the anti-cure people cover themselves with the disguise of being pro something is what we have to stop. They are not PRO-care, they are simply anti-cure.

        Of course people who are pro-cure do want more resources put towards a cure and not allow money to be wasted on things that we already know about care which are endlessly restudied, we are not against care - we are simply pro-cure.
        Dennis Tesolat
        www.StemCellsandAtomBombs.blogspot.com

        "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
        Martin Luther King

        Comment


          #5
          Originally posted by StemCells&AtomBombs View Post
          1. I never hear people who are in favour of finding a cure for sci argue against care.

          2. The people who are often called the 'care' group don't advocate care as much as they advocate against a cure.
          Can't say more in less!

          And curiously enough, i just find that people that don't agree with those two points, never leave the sofa often enough... Same with people that respects and support nowadays CDRF, RHI...

          Know before talk would be a good motto.

          Obviously this is not everyone, but a statistically important group...
          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)

          Comment


            #6
            Hopefully the whole debate will become moot when a therapy shows efficacy

            Comment


              #7
              Originally posted by Fly_Pelican_Fly View Post
              Hopefully the whole debate will become moot when a therapy shows efficacy
              I agree with you, but that is not only sad but selfish.

              I hate bullfighting but here in Spain we have the saying "a toro pasado", which means something like everyone is brave when the bulls have passed by already...
              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)

              Comment


                #8
                I am not anti-cure, although I am sure some of you would classify me as such. I simply believe that a "cure" will take time and there is not a lot we can do about it. You can't make a baby in a month by getting 9 girls pregnant, you also can't get a cure for SCI tomorrow buy "making a SCI Manhattan project" or "making curing SCI a nation priority. Do I think more resources should be devoted to finding a cure, yes. Am I generally unhappy with the pace of research currently? No.

                Comment


                  #9
                  By no means selfish, just a realist.

                  I just feel that my time is better dedicated to helping people who want to learn rather than trying to convince people who dont. Those who want to learn will seek out knowledge in the right places and from the right people. Others feel productive by being destructive - in which case, why give them that opportunity by engaging them?

                  It's easier to play devil's advocate than to make positive contributions it seems.

                  Comment


                    #10
                    If and hopefully when the cure becomes available, then the care we take of ourselves now will be as important as the cure. If care is forsaken for the cure, then it is silly to spend any time looking for a chronic cure. It doesn't help anyones cause to attempt to dictate terms to others. It doesn't help anyones cause to attempt to belittle others opinions or feelings. We all have our own crosses to bear. In my case advice is welcome, criticism is either ignored or rejected. Too often ego's outweigh intellect and it hurts a cause more than it helps.

                    Comment


                      #11
                      There will be no support of RHI this year as donations have dwindled and the annual Wheels in Motion event is not being held for the first time in 8yrs. I hope the continued criticism on their facebook page by our European friends had nothing to do with that.

                      I think discussions like this divide the community.

                      The biggest financial pushes have come when a scientist declares he/she is onto something good ... I've been here ten years and that's my experience.
                      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

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

                      Comment


                        #12
                        There are tons of RHI events being planned, which ones are you referring to?

                        Comment


                          #13
                          I don't see the annual Wheels in Motion event .. they are still going ahead with the 25th anniversary plans for 2012 (nation wide relay).
                          Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

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

                          Comment


                            #14
                            Originally posted by lynnifer View Post
                            I hope the continued criticism on their facebook page by our European friends had nothing to do with that.
                            I hope you understand how the real situation is. I hope you know it's not our criticism the first thing that started but their incompetence, arrogance and obscurantism.

                            They are the ones who are spoiling money by millions and saving more millions (they never wanted to explain what for), consequently letting good projects die and leaving us in our wheelchairs.

                            They are the ones who don't want to listen, don't accept constructive criticism and even delete our messages (until enough people read them and they couldn't hide it anymore) so they can keep their white fake smile to the donors, who sadly don't know any of this. They are too cool to admit they are rotten as it gets. I'm not accusing Rick Hansen himself, I don't know him and I'd guess he doesn't know anything about this, he's probably just a puppet now.

                            I hope you are not affected by blind patriotism. Organisations do get rotten, just like governments. And some of us still want to stand up one day before dying. So we must point out what's not working properly.

                            And BTW, some of us are still waiting for you in Skype. Don't be afraid, we can't europeanize people by skype hahaha
                            Last edited by 0xSquidy; 5 Jun 2011, 4:44 PM.
                            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)

                            Comment


                              #15
                              Guys, we are all in some turmoil with all the uncertainties of trials and sometimes false promises. I havn't seen much on Wise's plans for human trials in the States and results of phase 1 from Hong Kong. I'm thinking that the results are to be coming in June, this month, for the 7 or 8 patients currently treated. Geron's trial, as you know, was highlighted again on ABC news the other day. If we can get phase 1 results from Wise's trials released soon, more patients entered into Geron's trial, currently 2, and other trials such as StemCell inc in Switzerland, we can start to fell the cures and root out the bullshit.

                              keeping on

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