Thread: ChinaSCINet Update

  1. #2061
    Quote Originally Posted by paolocipolla View Post
    paolocipolla says:
    Wise presented preliminary results almost two years ago, my understanding is that it does not work.

    Paolo, what do you base the above statement on? How can you make this statement if you haven't seen the data?
    Jim,

    Wise in his presentation said there in no significant change in motor and sensory score. That for me means the treatment does not work,

    Paolo[/QUOTE]

    Was the purpose of the therapy to ever get changes in motor and sensory scores? I always thought return of walking was the purpose. What the results mean "for you" is completely irrelevant if the results you're looking at have nothing to do with the purpose of the therapy.

  2. #2062
    Senior Member khmorgan's Avatar
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    May I offer yet another uneducated opinion?

    Dr. Young has said many times that with only 10% of the spinal cord functioning, a person's walking would appear normal to an occasional observer. I think this means that we aren't talking a binary (good or bad) case here. If you have 15% of your cord intact, you will appear very normal. However, 5% and you will be paralyzed. Who knows about 9%?

    Now, what if you have that 5%? It is still connected to its targets, but there aren't enough functioning axions to control enough muscles to allow you to move. Also, perhaps the remaining axions have become unresponsive after years of being ineffective.

    This may be why the electrical stimulation works, i.e. it simply amplifies the signals sent by the 5%.

    Getting back to the ChinaSCINet trials, maybe the treatment is merely activating the intact 5% of the axions, or maybe it is increasing the number of active axions to 10% or more. I'm sure they are trying to figure that out. The exciting part is that whatever they are doing seems to be making a difference. I applaud their efforts and don't condemn them because they have unanswered questions or failed to cure animals first.

  3. #2063
    Quote Originally Posted by khmorgan View Post
    May I offer yet another uneducated opinion?

    I applaud their efforts and don't condemn them because they have unanswered questions or failed to cure animals first.
    people are actually criticizing them for not curing animals first? my God!! is this process not strenuous enough? anything they can skip i personally appreciate. why would anyone advocate wasting more time and money?

  4. #2064
    Quote Originally Posted by Eric.S View Post
    people are actually criticizing them for not curing animals first? my God!! is this process not strenuous enough? anything they can skip i personally appreciate. why would anyone advocate wasting more time and money?
    By your logic, they should have just skipped the human clinical trials too and immediately sold the UCB therapy to any customer. It would have saved at least 5 years and millions of dollars. Also, animal testing saves time and money in the larger scheme of things.
    Last edited by Nowhere Man; 08-19-2014 at 08:15 PM.

  5. #2065
    Senior Member khmorgan's Avatar
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    Quote Originally Posted by Nowhere Man View Post
    By your logic, they should have just skipped the human clinical trials too and immediately sold the UCB therapy to any customer. It would have saved at least 5 years and millions of dollars. Also, animal testing saves time and money in the larger scheme of things.
    Right! Of course, it costs far more to exercise a mouse (move his limbs) 6 hours at day 6 days a week, than it does to have a patient's family do it. But, I'm sure your knowledge and experience is superior to ours.

    Oh yes, Dr. Young also mentioned that in China, you pretty much walk or you die. They don't have Medicaid, SSD, etc. that act as a safety net for injured people. So, you think it would be better to let people die and cure mice. Interesting.

    As for bringing the Phase 3 trials to the US, if the treatment has been proven to be safe and effective in China (Phase 1 & 2 trials), why not bring it to the US? Maybe we can deprive a few people the enjoyment of being in a chair.

    Sorry for the sarcasm. I just get tired of laypeople constantly questioning the actions of dedicated, highly trained professionals who are just trying to save people's lives.
    Last edited by khmorgan; 08-20-2014 at 10:31 AM.

  6. #2066
    Quote Originally Posted by tomsonite View Post
    Jim,

    Wise in his presentation said there in no significant change in motor and sensory score. That for me means the treatment does not work,

    Paolo
    Was the purpose of the therapy to ever get changes in motor and sensory scores? I always thought return of walking was the purpose. What the results mean "for you" is completely irrelevant if the results you're looking at have nothing to do with the purpose of the therapy.[/QUOTE]


    Tom,

    time will tell if non voluntary steppig is a relevant recovery. I don't think so.

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

  7. #2067
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    Here's an idea. Go find one of those people walking with a walker and ask them if they would rather do that or be confined to a chair like before. I bet you know the answer. It may not be cure you want
    but its a hell of a lot better than what a lot of us have now.

  8. #2068
    Quote Originally Posted by khmorgan View Post
    May I offer yet another uneducated opinion?

    Dr. Young has said many times that with only 10% of the spinal cord functioning, a person's walking would appear normal to an occasional observer. I think this means that we aren't talking a binary (good or bad) case here. If you have 15% of your cord intact, you will appear very normal. However, 5% and you will be paralyzed. Who knows about 9%?

    Now, what if you have that 5%? It is still connected to its targets, but there aren't enough functioning axions to control enough muscles to allow you to move. Also, perhaps the remaining axions have become unresponsive after years of being ineffective.

    This may be why the electrical stimulation works, i.e. it simply amplifies the signals sent by the 5%.

    Getting back to the ChinaSCINet trials, maybe the treatment is merely activating the intact 5% of the axions, or maybe it is increasing the number of active axions to 10% or more. I'm sure they are trying to figure that out. The exciting part is that whatever they are doing seems to be making a difference. I applaud their efforts and don't condemn them because they have unanswered questions or failed to cure animals first.
    Quote Originally Posted by khmorgan View Post
    Right! Of course, it costs far more to exercise a mouse (move his limbs) 6 hours at day 6 days a week, than it does to have a patient's family do it. But, I'm sure your knowledge and experience is superior to ours.

    Oh yes, Dr. Young also mentioned that in China, you pretty much walk or you die. They don't have Medicaid, SSD, etc. that act as a safety net for injured people. So, you think it would be better to let people die and cure mice. Interesting.

    As for bringing the Phase 3 trials to the US, if the treatment has been proven to be safe and effective in China (Phase 1 & 2 trials), why not bring it to the US? Maybe we can deprive a few people the enjoyment of being in a chair.

    Sorry for the sarcasm. I just get tired of laypeople constantly questioning the actions of dedicated, highly trained professionals who are just trying to save people's lives.
    You are right, these are uneducated opinions.
    Debating on CareCure is like participating in the special-olympics. You may win, but you're still disabled.

  9. #2069
    Quote Originally Posted by paolocipolla View Post


    Tom,

    time will tell if non voluntary steppig is a relevant recovery. I don't think so.

    Paolo
    I think the type of walking that most people gained (rolling walker) is not practical for real world use. However, two people from the Phase II trial are able to stand and walk independently with a 4 point walker. I have seen the video of the walking, and have seen the video of the motor score exam that showed no changes. The man's walking is practical, despite his lack of voluntary motor ability.

    The practical application of the walking yielded by this trial is debateable. But to say the therapy doesn't work at all is simply not true. Clear changes have been brought by it, whether they are significant or not.

  10. #2070
    Hey Tomsonite, thanks for the earlier explanation, I'm finding out more about it. To me it's a success, or at least a foundation to build upon. Of course we're looking forward to that publication to see the changes in bladder/bowels etc, that Jim has mentioned. I've also looked at the Central Pattern Regulator, and have only scratched the surface. I just have this particular question - would the participants be able to chose when to walk, speed they walk and direction?

    I'm sure the upper body can be used to change direction, using some sort of walker. It would be funny if I'm walking into a wall, and I have the slowest "NOOOOOO!" moment ever, of the impending doom

    Jokes aside, whether there are positive or negative results, I feel I need to support the trial as it deals with chronic SCI. I sure would love to be walking, even if I walk into a wall - and not to mention the impending results. Fewer chance of pressure sores, legs that aren't as skinny, lesser impact of osteoporosis, and a chance to walk alongside my parents, sisters, future children, and wife. No matter how wonky or functional.

    Of course I would be cheeky to ask if I can get back on my bike but of course we need to wait and see how it pans out. To me (IMO) the results are POSITIVE. I would love for someone to tell of ANY other therapy/trial that has led to stepping and walking so close to a non SCI person... Hope I didn't shoot myself in the foot there don't pull out a therapy that has

    Lots of love.

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