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Thread: ChinaSCINet Update

  1. #2891
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    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
    I'm T3 complete but you know what's weird? I can breath! Isn't that amazing even though my lungs are below my injury. What's more, I can fire my hip flexors slightly and, when my knees are blocked by a PT I can "walk" with a walker. Nonetheless, I can get bladder botox injections and other minor surgeries without any anesthetic or pain killers because I'm complete.

    Complete means no sacral sensation.

    It absolutely does not mean nothing moves below the first irregular dermatome.
    T3 complete since Sept 2015.

  2. #2892
    Jim. Thank you or your informative updates. I'm c5/6 complete 27 years. Still hoping maybe one day I won't need constant care. I'd love to start from dependent to independent one day and go from there. We all feel each others pain and frustration. Hope is all we have left. Thanks again to ALL who work on the cure!

  3. #2893
    Quote Originally Posted by Jim View Post
    Paolo, once again, you have no idea what you are talking about.

    The Phase II Trial that has been published took place at the Kunming General Army Hospital. That is where Dr. Zhu Hui, the head neurosurgeon, started the 6-6-6 walking program. Well after the trial was completed, Dr. Zhu had to retire from the army because of her age, and the entire program was moved to Tongren Hospital. No one has visited the army hospital, therefore, any reports you are referring to are about patients from Tongren, and have nothing to do with our clinical trial.

    There was a clinical trial at Tongren, but those subjects did not receive cells. Thirty subjects were randomized to aggressive untethering surgery + 6-6-6, or just 6-6-6.
    I wonder why the videos I have seen have been taken down from the web shortly after I have watched them.

    Any ideas?

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

  4. #2894
    Senior Member lunasicc42's Avatar
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    Jim, in an effort to Possibly end debate, when will the videos be made public for all to see at least on this site or within this community? It will most likely galvanize this community ...if that is a no-go and can't be done due to some circumstances can a date or approximate date be set for when the videos will be made public? At least to this community ...I think that can only help the movement

    Ideas or comments?
    "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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  5. #2895
    Quote Originally Posted by paolocipolla View Post
    I wonder why the videos I have seen have been taken down from the web shortly after I have watched them.
    Any ideas?
    Paolo
    Paolo, you accused me of misleading this community, again, and I explained why you were dead wrong. As usual, no response, don't have the integrity to say, my bad, I now understand. ASIA scores don't matter to you, SCIM scores, nonsense, WISCI, what is that? This therapy has given degrees of freedom to most who participated, doesn't matter to you.

    Every neurosurgeon, dr, and nurse in the Hong Kong/China trials volunteered their time, because they care deeply. There are 80,000 spinal cord injuries per year there, people are suffering big time. You must not understand that, being a para in Italy.

    Regarding the videos you saw? Who even knows what you saw? You said you received 'reports' about patients in our China trial, but they weren't even in the hospital where the trial occurred. There are videos on this website of some who were in the trial, I haven't taken them down. Any video that gets out is fine by me. I have shared videos with several CC members. Not Paolo, because you are a tool.

  6. #2896
    And therein lies the problem. I do know of the ASIA scale. The ASIA scale that puts me and someone who has reflexes and can move muscles below their injury in the same category. That makes a very easy way to manipulate results. Pick the injuries that will show the most improvements on a scale that is based on sacral sensation, instead of individual functionality.

    But I also see and know where the heat comes from in this section. Calling people tools, and acting like they don’t understand suffering because they’re a para? Condescending questions of do we know as much as you do about an outdated injury scale. No wonder people give you a load of shit...I’d say you deserve it. I’m sure it gets tiresome with all the questions and criticism. People saying you’re not accomplishing what you believe you’re accomplishing, but that’s what you signed up for. To be on the frontline against a life changing injury. Calling people names and talking down to people only makes you look petty and defensive.

  7. #2897
    Denied, for years, Paolo has been attacking Dr. Young and myself on this site. Actually, he has been warned several times that if it continues, his account will be suspended. Rather than do that, I chose to address his bs.

    The ASIA Scale is a 'tool' used in the clinical trial. It is administered by the same team to every patient, before treatment, and at several time points after treatment. This ensures that if any changes occur, they are accurately recorded. Out of the 20 patients in the trial, two went from A to B, and three went from A to C.

    Look at the 9:00 minute mark in this video, http://en.kmtrh.org/news/1378349623229.html (This patient was not in the clinical trial). 15 out of 20 patients in the trial walked this well or better (with ropes). The Walking Index of Spinal Cord Injury (WISCI) was used to measure walking improvement- http://www.spinalcordcenter.org/rese...isci_guide.pdf

    You should read the attached published paper that summarizes the clinical trial.
    Attached Images Attached Images

  8. #2898
    Senior Member lunasicc42's Avatar
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    Quote Originally Posted by Jim View Post
    Denied, for years, Paolo has been attacking Dr. Young and myself on this site. Actually, he has been warned several times that if it continues, his account will be suspended. Rather than do that, I chose to address his bs.

    The ASIA Scale is a 'tool' used in the clinical trial. It is administered by the same team to every patient, before treatment, and at several time points after treatment. This ensures that if any changes occur, they are accurately recorded. Out of the 20 patients in the trial, two went from A to B, and three went from A to C.

    Look at the 9:00 minute mark in this video, http://en.kmtrh.org/news/1378349623229.html (This patient was not in the clinical trial). 15 out of 20 patients in the trial walked this well or better (with ropes). The Walking Index of Spinal Cord Injury (WISCI) was used to measure walking improvement- http://www.spinalcordcenter.org/rese...isci_guide.pdf

    You should read the attached published paper that summarizes the clinical trial.

    It looks like the videos on that link have since been taken down (at least they are gone for me now...they were there a few months ago)
    Jim ,if that wasn't the scinet trial ,do you know what trial that was ? Neurogel perhaps? Because I am pretty sure the neurogel trial is also doing their rehab there. I think
    "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

  9. #2899
    Quote Originally Posted by lunasicc42 View Post
    It looks like the videos on that link have since been taken down (at least they are gone for me now...they were there a few months ago)
    Jim ,if that wasn't the scinet trial ,do you know what trial that was ? Neurogel perhaps? Because I am pretty sure the neurogel trial is also doing their rehab there. I think
    I just watched before, doesn't work in google chrome. I don't even know if that patient was a part of any trial.

  10. #2900
    Quote Originally Posted by Jim View Post
    Denied, for years, Paolo has been attacking Dr. Young and myself on this site. Actually, he has been warned several times that if it continues, his account will be suspended. Rather than do that, I chose to address his bs.

    The ASIA Scale is a 'tool' used in the clinical trial. It is administered by the same team to every patient, before treatment, and at several time points after treatment. This ensures that if any changes occur, they are accurately recorded. Out of the 20 patients in the trial, two went from A to B, and three went from A to C.

    Look at the 9:00 minute mark in this video, http://en.kmtrh.org/news/1378349623229.html (This patient was not in the clinical trial). 15 out of 20 patients in the trial walked this well or better (with ropes). The Walking Index of Spinal Cord Injury (WISCI) was used to measure walking improvement- http://www.spinalcordcenter.org/rese...isci_guide.pdf

    You should read the attached published paper that summarizes the clinical trial.
    Thank you Jim, I really mean it.

    For the rest let's agree to desagree.

    Time will tell.. Hope the US trial will start soon, so time will tell soon.

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

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