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    #31
    jhope,

    Hang in there. I get angry at the slow pace, too, but I try to transform the anger into energy to work. Getting angry at people may help you feel a little better temporarily but it doesn't really help us make progress. We all do what we can to make the goal of the cure come about. For me, it is spending as much of my time and effort as possible to get clinical trials going, something that I know how to do. When I feel burnt out, which happens occasionally because I have been doing this for many years, I remind myself that what I have given is nothing compared to you guys.

    The most difficult part is not to fall into the trap of thinking that your answer is the one and only. This often happens to people undertaking difficult tasks over long periods. People believe in what they do and they must have faith to persist in a course of action that has many obstacles. Unfortunately, most people start believing that that everybody else is wrong and even attack others who may be pursuing a different course. I see this very often, not just amongst people in the community but amongst scientists.

    When I attend spinal cord injury meetings, I often hear my colleagues pontificate about clinical trials, even though they have never done one and don't understand what it takes to organize a trial. I also see many scientists get on their high horses and proclaim that other doctors or scientists are giving false hope or are unethical because this or that study had not yet been done, or the trials do not meet their particular standards. It is easy to be critical. People have been very critical of Geeta Shroff.

    So, I am acutely aware of the criticism that Geeta Shroff is facing and what it takes for her to continue to do what she is doing. I have never met Geeta Shroff but have the impression that she believes what she is doing. It is difficult, if not impossible, to tell patients to their faces that you have a therapy that will restore their function, unless you believe it yourself. It is not like selling a used car to some stranger. You have to face your patients while they are being injected and also deal with them when they come back to tell you that they have not recovered. I am sure that has happened with Geeta Shroff. So, I have no doubt that she believes in her therapy and many of her patients, such as Amanda and Perry Cross, also believe.

    It is possible to delude oneself for years, even decades, that a therapy is working. After all, many patients will come back to say that they are getting better. In fact, the placebo effect alone will result in 40% of people becoming convinced that they are getting better. In the meantime, for the person who is deluding himself or herself that a therapy works, the world separates into two classes of people. One class are supporters and the other class are detractors and critics. So, you listen to those who support you and ignore the latter. That is only human nature.

    In clinical trials, you must protect yourself against these influences. When you do a trial, you must be prepared to say that a therapy does not work. You must have other eyeballs, preferably non-biased ones, look at the results. You must have controls. Otherwise, it is very easy to convince yourself that a therapy is working when it is actually not. It is so easy to jump to the conclusion that something is working. My heart leaps whenever an investigator in trials that I am doing says that somebody is walking or whatever. Objectivity is not possible when you care.

    Wise.

    Comment


      #32
      Without getting personal here is an eye opener about snake oil merchants
      People are frequent this forum, know quite well about the how and who they might be it's the new commers and newly injured that worry me. Desperation for a cure inhibits our sense of logical thinking.

      A number of tips have been offered to patients travelling abroad for stem cell therapy to help them avoid scams. These include avoiding clinics who are:

      nDemanding large amounts of money upfront.

      nOffering the same cells for unrelated diseases.

      nRefusing to say where the cells come from .

      nDenying there is any risk in the treatment.

      nBased in a country that does not have good regulation of the treatment.

      Read more: http://www.irishexaminer.com/ireland...#ixzz1hFPfftu8




      Scroff hits l these criteria

      Comment


        #33
        May i inform the admin not to allow officials from stem cell companies such as blue horizon stem cells come to the CCC and try to sell or advertize their therapy. In my opinion they should be banned

        Peter F

        Comment


          #34
          Originally posted by peterf View Post
          May i inform the admin not to allow officials from stem cell companies such as blue horizon stem cells come to the CCC and try to sell or advertize their therapy. In my opinion they should be banned

          Peter F
          Peter,

          I am the administrator of this site. We do not allow stem cell companies or any company to sell or advertise products on this site.

          Wise.

          Comment


            #35
            Originally posted by Wise Young View Post
            Peter,

            I am the administrator of this site. We do not allow stem cell companies or any company to sell or advertise products on this site.

            Wise.
            I am sure this true, but it does happen! In fairness, some of these offensive posts (I do loathe commercials) do get removed.
            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.

            Comment


              #36
              Originally posted by Wise Young View Post
              jhope,

              Hang in there. I get angry at the slow pace, too, but I try to transform the anger into energy to work. Getting angry at people may help you feel a little better temporarily but it doesn't really help us make progress. We all do what we can to make the goal of the cure come about. For me, it is spending as much of my time and effort as possible to get clinical trials going, something that I know how to do. When I feel burnt out, which happens occasionally because I have been doing this for many years, I remind myself that what I have given is nothing compared to you guys.

              The most difficult part is not to fall into the trap of thinking that your answer is the one and only. This often happens to people undertaking difficult tasks over long periods. People believe in what they do and they must have faith to persist in a course of action that has many obstacles. Unfortunately, most people start believing that that everybody else is wrong and even attack others who may be pursuing a different course. I see this very often, not just amongst people in the community but amongst scientists.

              When I attend spinal cord injury meetings, I often hear my colleagues pontificate about clinical trials, even though they have never done one and don't understand what it takes to organize a trial. I also see many scientists get on their high horses and proclaim that other doctors or scientists are giving false hope or are unethical because this or that study had not yet been done, or the trials do not meet their particular standards. It is easy to be critical. People have been very critical of Geeta Shroff.

              So, I am acutely aware of the criticism that Geeta Shroff is facing and what it takes for her to continue to do what she is doing. I have never met Geeta Shroff but have the impression that she believes what she is doing. It is difficult, if not impossible, to tell patients to their faces that you have a therapy that will restore their function, unless you believe it yourself. It is not like selling a used car to some stranger. You have to face your patients while they are being injected and also deal with them when they come back to tell you that they have not recovered. I am sure that has happened with Geeta Shroff. So, I have no doubt that she believes in her therapy and many of her patients, such as Amanda and Perry Cross, also believe.

              It is possible to delude oneself for years, even decades, that a therapy is working. After all, many patients will come back to say that they are getting better. In fact, the placebo effect alone will result in 40% of people becoming convinced that they are getting better. In the meantime, for the person who is deluding himself or herself that a therapy works, the world separates into two classes of people. One class are supporters and the other class are detractors and critics. So, you listen to those who support you and ignore the latter. That is only human nature.

              In clinical trials, you must protect yourself against these influences. When you do a trial, you must be prepared to say that a therapy does not work. You must have other eyeballs, preferably non-biased ones, look at the results. You must have controls. Otherwise, it is very easy to convince yourself that a therapy is working when it is actually not. It is so easy to jump to the conclusion that something is working. My heart leaps whenever an investigator in trials that I am doing says that somebody is walking or whatever. Objectivity is not possible when you care.

              Wise.

              Well said......Thanks
              Han: "We are all ready to win, just as we are born knowing only life. It is defeat that you must learn to prepare for"

              Comment


                #37
                hi Wise and everybody,

                does anybody know anything about what Dr.Hongyun Huang latest therapy? ''Second Generation of Neurorestoration Therapy (SGNT)''? they claim to have the best outcome,are there any credible data about this therapy? has anybody on this site recently receive this therapy?

                Thank u and happy holidays.

                Comment


                  #38
                  Originally posted by Wise Young View Post
                  jhope,

                  Hang in there. I get angry at the slow pace, too, but I try to transform the anger into energy to work. Getting angry at people may help you feel a little better temporarily but it doesn't really help us make progress. We all do what we can to make the goal of the cure come about. For me, it is spending as much of my time and effort as possible to get clinical trials going, something that I know how to do. When I feel burnt out, which happens occasionally because I have been doing this for many years, I remind myself that what I have given is nothing compared to you guys.

                  The most difficult part is not to fall into the trap of thinking that your answer is the one and only. This often happens to people undertaking difficult tasks over long periods. People believe in what they do and they must have faith to persist in a course of action that has many obstacles. Unfortunately, most people start believing that that everybody else is wrong and even attack others who may be pursuing a different course. I see this very often, not just amongst people in the community but amongst scientists.

                  When I attend spinal cord injury meetings, I often hear my colleagues pontificate about clinical trials, even though they have never done one and don't understand what it takes to organize a trial. I also see many scientists get on their high horses and proclaim that other doctors or scientists are giving false hope or are unethical because this or that study had not yet been done, or the trials do not meet their particular standards. It is easy to be critical. People have been very critical of Geeta Shroff.

                  So, I am acutely aware of the criticism that Geeta Shroff is facing and what it takes for her to continue to do what she is doing. I have never met Geeta Shroff but have the impression that she believes what she is doing. It is difficult, if not impossible, to tell patients to their faces that you have a therapy that will restore their function, unless you believe it yourself. It is not like selling a used car to some stranger. You have to face your patients while they are being injected and also deal with them when they come back to tell you that they have not recovered. I am sure that has happened with Geeta Shroff. So, I have no doubt that she believes in her therapy and many of her patients, such as Amanda and Perry Cross, also believe.

                  It is possible to delude oneself for years, even decades, that a therapy is working. After all, many patients will come back to say that they are getting better. In fact, the placebo effect alone will result in 40% of people becoming convinced that they are getting better. In the meantime, for the person who is deluding himself or herself that a therapy works, the world separates into two classes of people. One class are supporters and the other class are detractors and critics. So, you listen to those who support you and ignore the latter. That is only human nature.

                  In clinical trials, you must protect yourself against these influences. When you do a trial, you must be prepared to say that a therapy does not work. You must have other eyeballs, preferably non-biased ones, look at the results. You must have controls. Otherwise, it is very easy to convince yourself that a therapy is working when it is actually not. It is so easy to jump to the conclusion that something is working. My heart leaps whenever an investigator in trials that I am doing says that somebody is walking or whatever. Objectivity is not possible when you care.

                  Wise.
                  Wise,

                  I agree with what you said here above.

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

                  Comment


                    #39
                    The problem is Dr. Wise, Pharmaceutical companies, research, and medicine are businesses first. The risk vs reward is very high in Chronic sci. I have a solution. All of CareCure donate $5.00 a month to buy lottery tickets and if we win, Dr.Wise becomes the executor to bring the best hope human trials to fruition. It's a long shot but......yeah it's a shot better than we have now?
                    Han: "We are all ready to win, just as we are born knowing only life. It is defeat that you must learn to prepare for"

                    Comment


                      #40
                      Originally posted by jhope View Post
                      The problem is Dr. Wise, Pharmaceutical companies, research, and medicine are businesses first. The risk vs reward is very high in Chronic sci. I have a solution. All of CareCure donate $5.00 a month to buy lottery tickets and if we win, Dr.Wise becomes the executor to bring the best hope human trials to fruition. It's a long shot but......yeah it's a shot better than we have now?
                      Our best bet is to have somebody rich and powerful get a bad SCI. Even better if it is several rich and powerful people. C. Reeve was not that powerful and look at how much good he did to the field...Imagine a Bush getting a SCI...We would all be walking within 4 years.

                      Comment


                        #41
                        Originally posted by Cripply View Post
                        Our best bet is to have somebody rich and powerful get a bad SCI. Even better if it is several rich and powerful people. C. Reeve was not that powerful and look at how much good he did to the field...Imagine a Bush getting a SCI...We would all be walking within 4 years.
                        One of saudi princes has SCI, but how one can reach such a person?

                        Comment


                          #42
                          well in 12/21/2012 when the aliens will return, maybe the have a cure..... :0)
                          Han: "We are all ready to win, just as we are born knowing only life. It is defeat that you must learn to prepare for"

                          Comment


                            #43
                            As I recall Dr. Wise posted before that people offered him tons of money before to cure them, but since there is no cure yet even billionaires can't get cured. Am I right Dr. Young?
                            As far as Geeta Shrof, I wouldn't waste my time or money.
                            I found a youtube video of how the therapy looks like and iits so unsanitary, no gloves during injections, etc.
                            This guy went there twice, and he said that mris before and after changed after the second visit, hmm no comment
                            http://www.youtube.com/watch?v=ZC9SxnaPhFM
                            C5/C6 Complete since 08/22/09

                            Comment


                              #44
                              Don't know what to make of that....That does not look like a cure to me.
                              Last edited by jhope; 10 Jun 2012, 5:54 PM.
                              Han: "We are all ready to win, just as we are born knowing only life. It is defeat that you must learn to prepare for"

                              Comment


                                #45
                                Originally posted by jhope View Post
                                Don't know what to make of that....That does not look like a cure to me.
                                agreed
                                C5/C6 Complete since 08/22/09

                                Comment

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