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    #46
    Dr. Young,

    Your right it is ok for me to not believe in a cure in the close future. Look what I read, and see and research. Speaking of scams, I mean people on this very site are posting their experimental procedures they underwent and like it's nothing. This is outrageously wrong and pathetic as well as misleading.

    My right foot has been sleeping for about a year and a half now so if they cant find something to stop neuropathic pain or even UTI infections I wonder how the hell we are gonna get cured.

    Here is what I do believe. I believe acutes will be cured in the next decade no doubt and will be walking out of the hospital 3 weeks later. I am worried about chronics and all the ailments associated with what comes after many years of being injured. You can say that you believe in a cure and we just need clinical trials and resources but your not specific in levels, contusions, chronics, acutes, etc....It's very vague and not in a negative connotation at all.

    Hope is one thing, but being mislead is another. Not that you are misleading anyone in any way shape or form by giving us hope but there are no guarantees in life. I cannot emphasize how much people are hurting on this site and so far I have barely seen a light in the tunnel....it's like all flashing dead bulbs.
    Birds Fly in Flocks, but Eagles Fly Alone...

    Comment


      #47
      Originally posted by antiquity
      Eric, you seem frustrated because Wise won't spport what the Bieke group is doing. He's legitimate scientist Eric. You won't find many, if any legitimate neuroscientists who'd support Bieke's procedure or any other procedure that has no record of safety, efficacy or patient follow-up. You're looking to the wrong person for validation. During the Huang excitement, Wise suggested waiting to those who asked for his opinion. He was also critical of Huang's lack of follow-up. It's not true that Wise has been inconsistent in his attitude toward poorly documented procedures.
      Your assuming a lot. My one and only point is about Dr. Young's change in his stance towards experimental procedures which I may have been assuming myself. Im also getting the feeling you all are assuming i have some sort of connection to bieke or whatever because you brought it up like 3 times since i have posted. well you can check the ip's or whatever else and i will be happy to provide any info. i have no connection to any organization. I'm just an SCI individual thats is looking for help. I will admit I do believe in experimental treatments but have yet to support any or have recieved any.

      simply put im just a guy that wants to walk and has opinions. they may not align with yours but trust me their mine not bieke or whoever yall have aligned me with...

      Comment


        #48
        Originally posted by antiquity
        I don't understand your question. You're the one alleging that Wise's fangs are out now moreso than in the past. The fact is that Wise has never recommended that people undergo unproven treatments.

        I agree.... Im going simply off of my percieved reality. I absolutely could be wrong. and i wll say i have never heard him recommend unproven treatments either, all im sayin i've never heard him call a treatment a out and out scam before. and again he could be completely correct about it, im just sayin from my perspective it seems out of character. you obviously know the guy better than i do...

        it seems lately i have been pit against the doctor when i honestly have nothing against him at all. I may disagree with the method but i dont disagree with the fight and appreciate his efforts. i have always been a proponent of experimental procedures. that doesnt make me the enemy. i just feel its a much more efficient way of proceding and have felt that way for some time. if you dont believe me check my post history. i dont work for any company or represent anyone other than myself...

        Comment


          #49
          .....I have been in this chair for half my life.....I want out!!!! Anyway and anyhow the medical advances can be got.........I am all for begging and pleading with a tear in my eye to get my life back!! I don't have all the answers, but I do know that if we don't MAKE people know about this problem.....they won't KNOW it's a problem. Some people have to be told. And money feeds the KNOW!
          ~|*

          Comment


            #50
            Quote:
            Originally Posted by Z~LEI
            Being made aware is worth a billion dollars, which is what research needs. Go spin your web of awareness Spidergirl......he's just pissed off cuz he can't walk.

            By the way....who is zhang and what is he doing for research??


            Originally posted by brocko
            okay, say you get your billion dollars you tell me exactly what you are going to do with it that will expedite the cure. How do you plan to administer such a large amount of money. who will decide how much money goes to which research projects? who will ensure that it doesn't get pissed up against a wall being spent on empire building?

            and yes, I am pissed off that I can't walk, what a genius you must be.?
            Actually what a genius you must be. Before you go off running at the mouth please learn basic English skills like how to use the word realized and OHHHH achieved.

            Originally posted by brocko
            So you raise awareness, then what? Do you have any idea how many worthy causes compete for the same research dollar? You do realise that the charity game is a global industry don't you?

            Your simplistic celebrity focused solutions really annoy me, it's just SO much more complicated than you seem to realise.

            You have been slagging all and sundry for a lack of progress ever since you joined this forum. What is it that you have acvhieved in the same time?
            Birds Fly in Flocks, but Eagles Fly Alone...

            Comment


              #51
              Originally posted by brocko
              So tell me, how many billions of dollars and public awareness was required to find a cure for stomach ulcers?
              What we (SCI'd) need is billions of dollars. Almost nothing, at this point, could bring a cure around faster, in my opinion. The strange truth is that the power of media & celebrity can and does influence the masses and helps shape our government's directions, and spending of our money.

              The Human Central Nervous System is the most complex entity known to mankind within the known universe. Comparing it's cure to that of a stomach ulcer's cure might be a bit off... especially when a little milk seems to help mine, but does nothing for my paralysis.

              Comment


                #52
                Originally posted by Z~LEI
                By the way....who is zhang and what is he doing for research??
                Dr. Zhang is a surgeon in China who does peripheral nerve rerouting
                to treat sci.

                Do a search, he's been talked about a lot.

                His last name is Zhang

                Comment


                  #53
                  Originally posted by cljanney
                  What we (SCI'd) need is billions of dollars. Almost nothing, at this point, could bring a cure around faster, in my opinion. The strange truth is that the power of media & celebrity can and does influence the masses and helps shape our government's directions, and spending of our money.

                  The Human Central Nervous System is the most complex entity known to mankind within the known universe. Comparing it's cure to that of a stomach ulcer's cure might be a bit off... especially when a little milk seems to help mine, but does nothing for my paralysis.
                  I agree, funding is an essential component of finding a cure, but it's not as though there is some magic amount that once it is reached the cure will miraculously appear, as with most things in life it is a little more complicated than that. Spidergirls attempt to reinvent the wheel is ultimately a big waste of time and has more chance of doing harm than good.

                  you're right, comparing spinal cord injury to a stomach ulcer is a bit off, the point however is valid, it's not just a bucket full of money that gets the job done.

                  Comment


                    #54
                    Originally posted by Eric.S
                    In the first paragraph I have no idea what your talking about. I'm just saying I can remember people coming on here talking about experimental procedures and you seemed to have a more open minded response although you did always say that you were waiting to see there documented results or saying "I hope they publish there results". Its just seems like you have more fangs now, like I never remember you calling Dr. Huang a out and out scam artist anything of that nature.

                    So you believe Christopher Reeve's death was a result of experimental procedure?
                    Eric,

                    I have generally refrained from posting criticisms of therapies that people have reported on this site, except when asked directly by members. I want to encourage people to report their experiences. However, over the years, I have stated my concerns and doubts about groups that I think are scams. These include the purveyors of Neuralyn, the Tijuana Clinic that was transplanting shark embryo cells into people with spinal cord injury, and Geeta Shroff who is claiming that she is transplanting human embryonic stem cells.

                    Beike Biotechnology is recruiting American and European patients on Internet. They are charging high prices for a treatment that has never undergone clinical trial. Jon Hakim (who works for Beike) has posted what I consider to be unwarranted claims concerning the safety and efficacy of the treatment. When I questioned the statements, asking for data to support the statements, he said that:
                    • The treatment is improving a large majority of the patients and 80% of people have indicated their satisfaction with the therapy, suggesting that consumer satisfaction was sufficient to justify use and charging for the therapy.
                    • The treatment is completely safe, implying that there has been no adverse events or significant medical problems associated with the therapy in any of the patients to date.
                    • Beike Technology group is transplanting these cells in as many as one patient per day in various centers all over China, including hospitals in Shenyang and Hangzhou.
                    • The website http://www.stemcellschina.com/ provides anecdotal data and blogs of patients who have received treatments; Jon agreed that the web site presents mostly or all positive results.
                    • If I wanted to find out more about the treatments, I need to sign a non-compete and confidentiality agreement with them.


                    The fact that the Beike group is not and doesn't appear to have intentions of carefully documenting the safety and efficacy of their therapy is of particular concern. In my opinion, this has all the hallmarks of a scam and said so. I would be glad to withdraw my fangs if Beike Biotechnology were to commit to doing a rigorous clinical trial to establish the safety and efficacy of their therapy.

                    Regarding Christopher, what is your point?

                    Wise.
                    Last edited by Wise Young; 5 Jun 2007, 6:14 AM. Reason: edited for grammar

                    Comment


                      #55
                      I moved some off-topic posts from this thread to
                      /forum/showthread.php?p=666298#post666298

                      in the Members Only forum.

                      Wise.

                      Comment


                        #56
                        Originally posted by Wise Young
                        Eric,

                        I have generally refrained from posting criticisms of therapies that people have reported on this site, except when asked directly by members. I want to encourage people to report their experiences. However, over the years, I have stated my concerns and doubts about groups that I think are scams. These include the purveyors of Neuralyn, the Tijuana Clinic that was transplanting shark embryo cells into people with spinal cord injury, and Geeta Shroff who is claiming that she is transplanting human embryonic stem cells.

                        Beike Biotechnology is recruiting American and European patients on Internet. They are charging high prices for a treatment that has never undergone clinical trial. Jon Hakim (who works for Beike) has posted what I consider to be unwarranted claims concerning the safety and efficacy of the treatment. When I questioned the statements, asking for data to support the statements, he said that:
                        • The treatment is improving a large majority of the patients and 80% of people have indicated their satisfaction with the therapy, suggesting that consumer satisfaction was sufficient to justify use and charging for the therapy.
                        • The treatment is completely safe, implying that there has been no adverse events or significant medical problems associated with the therapy in any of the patients to date.
                        • Beike Technology group is transplanting these cells in as many as one patient per day in various centers all over China, including hospitals in Shenyang and Hangzhou.
                        • The website http://www.stemcellschina.com/ provides anecdotal data and blogs of patients who have received treatments; Jon agreed that the web site presents mostly or all positive results.
                        • If I wanted to find out more about the treatments, I need to sign a non-compete and confidentiality agreement with them.


                        The fact that the Beike group is not and doesn't appear to have intentions of carefully documenting the safety and efficacy of their therapy is of particular concern. In my opinion, this has all the hallmarks of a scam and said so. I would be glad to withdraw my fangs if Beike Biotechnology were to commit to doing a rigorous clinical trial to establish the safety and efficacy of their therapy.

                        Regarding Christopher, what is your point?

                        Wise.
                        A completely rational statement and response. I have no arguments with your views and you have addressed my original question...

                        regarding Christopher Reeves I have no point at all, I was asking your opinion.

                        Comment


                          #57
                          Thanks, Buck. I haven't been a member that long so a lot of what people mention are before my time here. I'll have a looksie!

                          Lei

                          Originally posted by Buck_Nastier
                          Dr. Zhang is a surgeon in China who does peripheral nerve rerouting
                          to treat sci.

                          Do a search, he's been talked about a lot.

                          His last name is Zhang




                          ~|*

                          Comment


                            #58
                            who barks louder win[animal kingdom]..........
                            auuuuuuuch.
                            is called intimidation[lawyers ,docs and presidents].lol

                            Comment


                              #59
                              Originally posted by Wise Young
                              You are not only gambling with your money but your time and your life.

                              In my opinion, people have a great deal to lose when they go to have experimental therapies in overseas clinics. .
                              Not to be glib because I understand and agree with the reasons you outlined Dr. Young. This is a rhetorical question, not one designed to disagree with you or cause a thread argument. But I wonder if there are not some people who do actually have nothing to lose? It is hard to convince someone otherwise when they feel they have already lost everything. And maybe it is true that you can't lose much more in some cases. Six months ago I used to read about unproven experimental treatments and wonder why people would risk so much. But I am starting to understand why and even wish I could just fly somewhere and give it a shot, any shot. I am not going to. But I understand the lure of hope, even false hope. Even though intellectually I understand the risks and think they are too high, if I had the chance I don't know that I could turn it down. An inability to reconcile hope and reality maybe, I don't know.
                              Last edited by orangejello; 5 Jun 2007, 8:42 PM.

                              Comment


                                #60
                                Originally posted by orangejello
                                But I understand the lure of hope, even false hope. Even though intellectually I understand the risks and think they are too high, if I had the chance I don't know that I could turn it down. An inability to reconcile hope and reality maybe, I don't know.
                                As people years from now potentially keep reading 5 more years, rational, intelligent, well informed people, will participate in experimental therapies.

                                At some point in age & time, the irrational at least becomes plausible.

                                Comment

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