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Thread: ChinaSCINet Trials

  1. #181
    Quote Originally Posted by Sue Pendleton View Post
    Hmmmm How to put this nicely. I didn't vote for Gore because I didn't want to hear about Bill Clinton for another 8 years. It may be unfair but you're known by the company you keep especially professionally. Or do I have the wrong Huang in mind?
    I helped train Dr. Huang but that doesn't meant that he speaks for ChinaSCINet. I work with hundreds of spinal cord injury doctors in China. Dr. Huang does not represent ChinaSCINet. He represents himself.

    Dr. Huang is a good man and he cares for his patients. I disagree with some of his approaches and particularly the restaurant approach towards spinal cord injury therapies and his charging for experimental therapies.

    I don't know, Sue. Everybody has a acquaintances but that doesn't mean that somebody should be attributing attitudes of acquaintance to you especially when you are there expressing opinions.

    Wise.

  2. #182
    Quote Originally Posted by Imight View Post
    I thought in the slide show, it stated that physical therapy would be encouraged after the procedure to not only restore physical function/strength but also promote cell growth? or did I read that wrong?
    Imight, I don't understand. What slide show are you talking about? Wise.

  3. #183
    I would like to address the comments made about Dr. Huang as well. I went to his hospital leaving the United States to accompany my most precious one to have OEC Glia cell transplantation for her spinal cord injury. I am not going to mention right now anything about the results unless asked, but I will respond to the comments made about Dr. Huang. This man and his team put beds in their own offices so that they could sleep there at that hospital 7 nights a week in order to ALWAYS BE AVAILABLE to their patients. Their offices were right next door to the patients' rooms. I routinely went into his office and the offices of the other doctors on his team and had extremely lengthly conversations about everything he offered and everything I had learned myself regarding stem cells. He himself went around at 9:30 at night at times from room to room to check on the patients that had the transplantation to see how they were feeling always with a smile on his face. Now damn it people we make our own decisions in life to chase our own dreams in order to try to improve our futures as I did with my most beloved one. Don't you dare blame someone who offers us a chance when you have witnesses showing how freaking dedicated this man is to what he believes in despite what failures may result. The price is 20,000 for his procedures. He showed me the break down of the costs. His team barely makes any type of profit per procedure, yet they keep doing it. Ignorance is not an excuse. God Bless all of you. Thank you.

  4. #184
    Senior Member Imight's Avatar
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    Quote Originally Posted by Wise Young View Post
    Imight, I don't understand. What slide show are you talking about? Wise.
    http://www.slideshare.net/wiseyou/StemCellSCISeoulkey/

    this one.

  5. #185
    Senior Member Imight's Avatar
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    Quote Originally Posted by Boxer View Post
    I would like to address the comments made about Dr. Huang as well. I went to his hospital leaving the United States to accompany my most precious one to have OEC Glia cell transplantation for her spinal cord injury. I am not going to mention right now anything about the results unless asked, but I will respond to the comments made about Dr. Huang. This man and his team put beds in their own offices so that they could sleep there at that hospital 7 nights a week in order to ALWAYS BE AVAILABLE to their patients. Their offices were right next door to the patients' rooms. I routinely went into his office and the offices of the other doctors on his team and had extremely lengthly conversations about everything he offered and everything I had learned myself regarding stem cells. He himself went around at 9:30 at night at times from room to room to check on the patients that had the transplantation to see how they were feeling always with a smile on his face. Now damn it people we make our own decisions in life to chase our own dreams in order to try to improve our futures as I did with my most beloved one. Don't you dare blame someone who offers us a chance when you have witnesses showing how freaking dedicated this man is to what he believes in despite what failures may result. The price is 20,000 for his procedures. He showed me the break down of the costs. His team barely makes any type of profit per procedure, yet they keep doing it. Ignorance is not an excuse. God Bless all of you. Thank you.
    I dont think anyone is discrediting Dr. Huangs passion. In fact I first heard about him thru his former college mate. Dr Wang from Rancho Los Amigos. altho Dr. Wang did tell me NOT to get the OEG when I was about a hair trigger away from buying a plane ticket to either Beijing or Chennai.

  6. #186
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by Wise Young View Post
    I helped train Dr. Huang but that doesn't meant that he speaks for ChinaSCINet. I work with hundreds of spinal cord injury doctors in China. Dr. Huang does not represent ChinaSCINet. He represents himself.

    Dr. Huang is a good man and he cares for his patients. I disagree with some of his approaches and particularly the restaurant approach towards spinal cord injury therapies and his charging for experimental therapies.
    Restaurant was the word I was thinking too.

    I don't know, Sue. Everybody has a acquaintances but that doesn't mean that somebody should be attributing attitudes of acquaintance to you especially when you are there expressing opinions.
    Wise.
    I did point out that it is unfair. It is also not universal. I try to judge, or not judge I guess, based on the person themselves. Unless you're a Crips or Blood.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  7. #187
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    Hey, the main reason I'm making my comments about Dr. Huang is that I spent $36,000 on Dikul's therapy in Moscow and it took me about 5 years of denial until I realized it wasn't the best use of my money. I kind of see the same approach by Dr. Huang. My doctors at the VA recommended I save my money and not go to Moscow, and of course I didn't listen to them. I got upset at them even.

    On the other hand, shortly after my injury, doing something, anything, to help myself recover was a good thing for me mentally, and especially it was good for my family. Even if that meant throwing money away - that was kind of therapeutic in itself. So I'm not judging anyone who goes to D. Huang at all.

  8. #188
    The issue I am regarding my response and message towards involves the comments made about Dr. Huang trying to run a scam. I am speaking from personal experience which there is no substitute for that the man's intent is genuine. He will be the first one to tell you that he does not know what the improvements if any will be. However again, his INTENT is genuine. We are all responsible for our own decisions. I decided five years ago to heavily invest myself in understanding spinal cord injuries so that I was empowered not relying on others to solely explain to me how things work. Here is an idea and I hope this is helpful. The "restaurant list" that Doctor Huang makes available is a perfect chance for all of us to do our own research and understand to the best of our abilities the science/medicine behind each option. With that, you can bring something to the table when questioning doctors instead of going to them almost blindly. I think that Dr. Wise Young can personally attest to my credibility in stating this based off of our in depth discussions we have had when I have attended his workshops at Rutgers. I taught myself everything by educating myself through the internet. It allows me and everyone alive willing to invest this time to be able to understand on their own what combinations of what therapies may provide the best possibilities for recovery, and then bounce that off doctors such as Wise Young so that you can actually challenge them to think of things they may not not entertained yet. The key is empowering yourself, and you don't need formal training to do so. Understanding what CsA and methylprednisolone and lithium do beyond the brief description that doctors may give you allows you to better take responsibility for helping heal yourself. I look at that "restaurant list" as options that may provide us with a chance if we take it upon ourselves to dig deeper in understanding how they may interact in ways doctors we have not thought of yet. The internet is a gift and doctors can only do so much. WE NEED TO EMPOWER OURSELVES AND WE CAN DO IT!!! We don't need to wait for someone to take our hand and lead us through every step. This pain we feel seeing our most beloved ones suffering is more than a human being can handle, so lets take responsibility a step further like we have been doing just by being a part of carecure and investing our time in teaching ourselves. Please know that any part of this that sounds abrasive is not directed towards anyone, but merely a display of my passion towards healing that is accompanied by my own frustrations towards watching my angel suffer so much without there being a darn thing alone that I can do to change it. By the way Doctor Wise Young, I will be meeting with you with my partner Kevin Mannix around January 21st to discuss trying to bring a "cure" or any type of relief to all of us suffering that much sooner, and I cannot wait to see what comes of it. I genuinely love you all, and thank you for baring with my passion

  9. #189
    Boxer,

    Thanks for your passion. Hongyun is a good friend and I admire his energy and his commitment. He takes considerable risks in doing what he does and I don't think that he is doing it for financial reasons, as suggested by some. As I have said, he really cares for his patients and believes that OEG cells work. In fact, he has treated his own mother with OEG transplants.

    I disagree with the approach that he is taking for the following reasons.
    1. Charging money for unproven experimental therapies is a violation of good clinical practice (GCP) regulations. While one might argue that the therapies that he is offering is "off-label" use of therapies that are already being used for other conditions, they are not proven for spinal cord injury and their use is therefore experimental.
    2. Unscrupulous doctors charge for experimental therapies, making false promises to people that the therapies work. While I don't think that Dr. Huang is making false promises, the line is very thin. Often, the doctor may not even have to say that the therapy is effective because people hear what they want to hear.
    3. Neither the patients nor the doctors know or understand enough about the therapies, their risks or benefits, to make informed decisions. There is simply not enough information and therefore there is no basis of an informed decision.
    4. Providing experimental therapy for pay interferes with clinical trials. It ultimately slows down progress in the field. Paying $20,000 or whatever for the trial and getting no credible information out of the procedure is not an efficient way to deal with experimental therapies.


    His efforts would be much better placed in carefully run, double-blind randomized trials that provide data to convince other doctors concerning the risk and benefits of the therapy. For example, despite all his work, Dr. Huang has yet to convince many other doctors in China concerning the OEG therapy and has convinced very few if any doctors overseas. The goal of clinical trials is to define the risk and benefits of a therapy and, if it is beneficial, to convince other doctors to use the therapy so that it would benefit the most people.

    Wise.

  10. #190
    Boxer, I totally understand your frustration with SCI and your passion for a cure. Apologies that I don't currently have the time to read through all of your posts to see if you have been to Huang previously for ''treatment'', but I would honestly advise yourself and others against it. Not only will you be completely wasting money which will invariably be needed down the line when an effective curative therapy is discovered, there is evidence that suggests such ''treatments'' can leave the individual susceptible to undesired secondary problems such as increased neuropathic pain. That is debilitating in itself. I'm sorry that I have to state 'treatment' in inverted commas, but I just can't bring myself to refer to anything that Huang currently offers as viable. As for this 'restaurant' nonsense - wow

    I can't comment on Huang's motives - I don't know the guy, nor have I personally seen him 'in action', so to speak. What I do have to question is, if his heart is truly in it for the benefit of the SCI victims that roll through his doors on a daily basis, surely his negligible results would task him to turn his attentions towards another approach or at the very least, attempt to fine-tune, prove and document what he currently offers? Maybe it is just me, but isn't that how favourable Science and Medicine usually unfold?

    All I'm really saying is that I don't think we should be putting this guy on a pedestal just because he is peddling 'something and anything' in a climate where few others currently do. If a therapy does little or nothing, is being offered for a price and for an extended period of time, it is not to be applauded in this way - it's simply not helpful and it runs every risk of discrediting an already under-funded field. There are various researchers that could bring what they currently have to the market in the way that Huang has. Why don't they? Because they understand that efficacy and safety are paramount and they simply will not sacrifice health and finances to merely 'rush' something out there.

    We need to allow more time to elapse here, difficult as that is. It's coming, but it's by no means here quite yet. I wish you well in whatever you choose to do, but I wish even more that you would reconsider.

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