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Thread: Dennis' Survey

  1. #1
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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.
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  2. #2
    Quote 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

  3. #3
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    Quote 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
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  4. #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

  5. #5
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    Quote 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.

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

  7. #7
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    Quote 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)

  8. #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.

  9. #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.

  10. #10
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    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.

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