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Thread: ChinaSCINet Update

  1. #2871
    Quote Originally Posted by Jim View Post
    beachlover, there's actually a great deal to speak of regarding ChinaSCINet and SCINetUSA. Attached is the published paper from the ChinaSCINet Phase II Trial. On page 1931 there is a graph that shows the improvements the subjects made. These patients were complete (AIS A), several converted to ASIA B or C.

    The SCIM (Spinal Cord Independence Measure) Scores tell the story. 19 out of 20 had substantial increases in this score. This meant they went from being dependent on a caregiver to do most things, to becoming independent. This includes the return of walking, bowel, and bladder function.

    This trial is about to be repaeted (with changes) in the US. https://clinicaltrials.gov/ct2/show/NCT03979742
    Thank you! I understand things seem to take forever, and while everyone's lives are going by it's hard to remain positive.

    But I don't understand how anyone can look at all the information supplied and at least not feel positive about the possibilities in the near future.

    Remember, these are Asia A participants who are in some cases many years post injury.

    I can only hope and imagine the benefit it might also have for incomplete injuries as well.

    It is taking far far too long. But it is finally moving forward.

  2. #2872
    Senior Member lunasicc42's Avatar
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    arms ,hands and boners. Arms , hands and boners , arms hands and boners
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


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  3. #2873
    Senior Member Imight's Avatar
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    Quote Originally Posted by paolocipolla View Post
    I have seen the videos, the way they drag their body around has nothing to do with walking.

    As far as I know UCB cells don't fix SCI, not even a rat SCI, both acute and chronic SCI.

    Paolo
    I used to be real critical of your negativity back in the day.

    but having gone there myself. your assessment is correct.

    in fact I was the only one on crutches doing laps and the place would freeze. I did see one kid try crutches a couple of days later, that was good to see.

    they are doing great things there. but as far as a cure, it is what it is, and it aint what it aint.

  4. #2874
    Paolo you haven't seen all the videos, stop misleading people. Mark, only patients in the clinical trial received cells, anyone you saw at Tongren was not in the trial.

  5. #2875
    Senior Member Imight's Avatar
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    Quote Originally Posted by Jim View Post
    Paolo you haven't seen all the videos, stop misleading people. Mark, only patients in the clinical trial received cells, anyone you saw at Tongren was not in the trial.
    there was an an asian american and a chinese woman who received the cells during the trial that were there. I was late to the trials by 6 months true, but they still offer the cells if you want to pay. same with the 6-6-6. and their were a handful of people that did.

  6. #2876
    I?m sure the people running the trial don?t consider it ?misleading?...but to a medically illiterate t-5 complete, saying patients in the trial went from ASIA-A to ASIA-C, IS misleading. To me, a complete is a complete...zero voluntary movement, zero sensation. To say someone went from chronic complete, to voluntary movement and sensation is a lie. I?m sure there?s ways to make numbers suggest otherwise.

    And ?walking?? Walking to me is voluntary movement, below injury, without use of an outside force. Whether it?s a locomotion machine, a set of roof mounted rubberbands bouncing off deep tissue reflex, or a robot exoskeleton...its not what i consider walking. I hope they prove me wrong, but I?ll quote iMight (shouts from Cali), It aint what it aint

  7. #2877
    Senior Member Tim C.'s Avatar
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    I stopped posting here on CC a while ago, Very depressing, The cure category especially. since 2002 all I hear is “write your congressman”
    God for bid they do anything other than trying to impeach the president. Only zero hope should be expected from them.

  8. #2878
    Quote Originally Posted by Denied2016 View Post
    I?m sure the people running the trial don?t consider it ?misleading?...but to a medically illiterate t-5 complete, saying patients in the trial went from ASIA-A to ASIA-C, IS misleading. To me, a complete is a complete...zero voluntary movement, zero sensation. To say someone went from chronic complete, to voluntary movement and sensation is a lie. I?m sure there?s ways to make numbers suggest otherwise.

    And ?walking?? Walking to me is voluntary movement, below injury, without use of an outside force. Whether it?s a locomotion machine, a set of roof mounted rubberbands bouncing off deep tissue reflex, or a robot exoskeleton...its not what i consider walking. I hope they prove me wrong, but I?ll quote iMight (shouts from Cali), It aint what it aint
    Do you know what the ASIA Impairment Scale is?

  9. #2879
    Senior Member lunasicc42's Avatar
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    Jim, has it been discussed and bandied about the pro's and cons and whether or not to publicize the videos of the treated patients walking? I imagine it has, what type of argument is used to make the decision to not publicize the videos? I imagine it would only be greatly beneficial all around regarding public awareness and therefore funds...taking patient privacy into account couldn't patients give their written permission or not to Release their individual trial videos? This is not just for me or us, how is that route seen by the coordinators of the trial to raise awareness and Donations
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


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  10. #2880
    Senior Member lunasicc42's Avatar
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    DAMNIT MAN! Let the recruitment finally begin! What exactly is the next step? ...sorry, frustrated that things are taking forever and we are seemingly so close, I know it's not so simple as "Trial = Cure" but when do we at least start the tangible process of recruitment?
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    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

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