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Thread: This - UK - clinical trials on SCI

  1. #11
    Yes. Nice people. - Maybe we should give it a go together?
    "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

    Don't ask what clinical trials can do for you, ask what you can do for clinical trials. (Ox)
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  2. #12
    Most people have it hammered into them by their doctors and nurses at rehab that there can never be any cure.

    Then the struggle of getting on with life and finding some meaning puts all hope of a cure on the back burner and before you know it 10 years, then 20 years have passed.

    I'm not sure the community is to blame any more than doctors - after all we are supposed to be able to trust them.

    But I think it's a terrible condition which completely changes your life, especially quadraplegia, and more should be done to reverse it.
    Last edited by Christopher Paddon; 06-30-2011 at 01:14 AM.

  3. #13
    I agree that patient education should be improved after SCI and that facts about lines of research should be made available to the SCI'd. However, many senior clinicians have'nt got the foggiest about the state of science so it is no easy task.

    Also, it doesnt help that some(disclaimer:i said some) veteran SCIs who do not believe in a Cure seem to take some kind of perverted joy in shooting down the hopes of newbies on Cure forums (more so on Apparelyzed than here on CC). That is just plain destructive to the cause. Surely they have something more productive to be doing - or maybe not . Many newbies feel a sense of conflict and some even guilt for even contemplating a Cure could benefit them. If these newbies were empowered a little we might actually have a few more Cure warriors than we have right now. These particular veteran SCIs are as guilty as Cure-oblivious clinicians at the mismanagement and interpretation of hope.

  4. #14
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    Quote Originally Posted by 0xSquidy View Post
    Yep, i agree on the "Leif on apparelyzed campaign". I tried too, and yep, most of them were "happy cripples" aka lazy butts.
    Yes. With you on that Ox. I don't use Apparelized now; it's a short cut to instant acute depression.
    2010 SCINet Clinical Trial Support Squad Member
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  5. #15
    chris arnold

    I don't use Apparelized now; it's a short cut to instant acute depression.

    well chris you better not let the Boss hear you say that . he will have you cut off
    AS I SIT HERE IN MY CHAIR . I LOOK OUT UPON THE GROUND .I WONDER WILL I EVER GET UP AND WALK A ROUND ??


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  6. #16
    Senior Member 0xSquidy's Avatar
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    Quote Originally Posted by chris arnold View Post
    it's a short cut to instant acute depression.
    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)

  7. #17
    Well i agree and disagree lads
    According to my research being a pessimist or ultra optimist are both bad what i search for is pragmatics and factual proof and the only way to prove if a therapy works or is effective is through GOV legislative approved trials.People posting about possible cures from tabloid newspapers and snake oil clinic testimonials i don't buy into. As for now i can only state stem therapy is an item of great interest.

  8. #18
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    an old song, look what happened to 'Europe' SINSE - none does any, a CONTINENT OF COMPLAINERS...
    Last edited by Leif; 07-02-2011 at 09:01 PM.

  9. #19
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    and lazy butts! Thath is wath Europe has evolved into. A continent of requiering and demanding ppl, witouth doing any. Europe here we go.

  10. #20
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    UK, France, Italy, Holland, Germany, Swiss and Skandinavia (Denmark and Sweden) - what are we doing... whath are we doing? Are we working on SCI cures? Yes or no. Are we trying. To help?

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