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    Originally posted by Dlevy View Post
    Makes you wonder if the research community shouldn't bear some responsibility to make something available. They enjoy a funded career performing interesting research. No stress whatsoever. Yet none fight to get their results to people that want to risk the consequence of an experimental therapy. My inquiry to Silver is a dead end. Do they not care that we are ready to die to try? Harkama's epic stem is locked away and hidden. None of them speak loudly to make these advances available. My suicide would go unnoticed. And Grammy spare me the insults please.
    You obviously have never spoken to any researcher about their career in detail. The "funded career" researchers "enjoy" so much is, more often than not, funded by grants that they have to write and acquire themselves. This takes an absurd amount of time and is quite stressful, because if they don't secure grants, they don't get research done. Often times, especially at big universities, researchers must publish X number of papers, posters, or presentations each year just to keep their jobs. However, between teaching, grant writing, and the constraints of an academic calendar little time is left to do actual research. And because many researchers must reach a quota, sometimes they publish whatever they can just to reach their quota, which takes away from time that could be spent doing more valuable research.
    The other point I left out was IRBs and regulatory bodies. "None" of the researchers fight to get their results to people? Really? None? How do you know that? I know plenty of researchers that have had to propose, re-write and re-propose, re-write and re-propose again before getting a study approved, and by the time you go through all of that to approve a study, it isn't the original design you had hoped for. Sometimes the opposite problem exists, where a study gets approved right away, but not enough people are available to staff the study, there are facility problems, etc, and a study dies.

    Many scientists do care that people are "ready to die to try." One researcher is very vocal about how he thinks "right to try" laws should be passed where people could volunteer for studies if they understand the implications of risking it all.

    I am not someone with a SCI, but I am an aspiring scientist. All of these things frustrate me, though I know not nearly as much as they frustrate you. However, I would encourage you to look more into the process of how research gets done. If you haven't already, order and read Don't Call it a Miracle from the Reeve Foundation's web site. Its available in a bunch of different formats and is free. Its a good explanation about how many scientists get caught in the never ending loop of keeping their careers afloat with grants, teaching, and rinky-dink studies just to make publication quotas.

    If you want to make a difference, contact lawmakers about getting right-to-try laws passed. Contact university presidents and tell them they need to change the system by which they rate their researchers so the scientists can actually get something done. Learn about the hurdles that exist with scientific dissemination and why its so tough to get therapies from the lab to the clinic.

    I believe if a researcher wants to get into this field, they should view it as a responsibility to get something done for the population they are trying to serve. That's how I view it and while many scientists don't think about it like that, many do as well. But it is not nearly as simple as you make it sound and statements like yours only fracture the community even more and hurt progress.

    Comment


      Originally posted by tomsonite View Post
      You obviously have never spoken to any researcher about their career in detail. The "funded career" researchers "enjoy" so much is, more often than not, funded by grants that they have to write and acquire themselves. This takes an absurd amount of time and is quite stressful, because if they don't secure grants, they don't get research done. Often times, especially at big universities, researchers must publish X number of papers, posters, or presentations each year just to keep their jobs. However, between teaching, grant writing, and the constraints of an academic calendar little time is left to do actual research. And because many researchers must reach a quota, sometimes they publish whatever they can just to reach their quota, which takes away from time that could be spent doing more valuable research.
      The other point I left out was IRBs and regulatory bodies. "None" of the researchers fight to get their results to people? Really? None? How do you know that? I know plenty of researchers that have had to propose, re-write and re-propose, re-write and re-propose again before getting a study approved, and by the time you go through all of that to approve a study, it isn't the original design you had hoped for. Sometimes the opposite problem exists, where a study gets approved right away, but not enough people are available to staff the study, there are facility problems, etc, and a study dies.

      Many scientists do care that people are "ready to die to try." One researcher is very vocal about how he thinks "right to try" laws should be passed where people could volunteer for studies if they understand the implications of risking it all.

      I am not someone with a SCI, but I am an aspiring scientist. All of these things frustrate me, though I know not nearly as much as they frustrate you. However, I would encourage you to look more into the process of how research gets done. If you haven't already, order and read Don't Call it a Miracle from the Reeve Foundation's web site. Its available in a bunch of different formats and is free. Its a good explanation about how many scientists get caught in the never ending loop of keeping their careers afloat with grants, teaching, and rinky-dink studies just to make publication quotas.

      If you want to make a difference, contact lawmakers about getting right-to-try laws passed. Contact university presidents and tell them they need to change the system by which they rate their researchers so the scientists can actually get something done. Learn about the hurdles that exist with scientific dissemination and why its so tough to get therapies from the lab to the clinic.

      I believe if a researcher wants to get into this field, they should view it as a responsibility to get something done for the population they are trying to serve. That's how I view it and while many scientists don't think about it like that, many do as well. But it is not nearly as simple as you make it sound and statements like yours only fracture the community even more and hurt progress.
      What you say is reasonable and true in many cases. I just think in the end you have been a little too hard with Dlevy, so let me post something on his side:

      "Something is rotten in the state of biomedical research. Everyone who works in the field knows this on some level. We applaud presentations by colleagues at conferences, hoping that they will extend the same courtesy to us, but we know in our hearts that the majority or even the vast majority of our research claims are false.
      When it came to light that the biotechnology firm Amgen tried to reproduce 53 “landmark” cancer studies and managed to confirm only six, scientists were “shocked.” It was terrible news, but if we’re honest with ourselves, not entirely unexpected."

      http://qz.com/603356/why-scientific-...be-reproduced/
      In God we trust; all others bring data. - Edwards Deming

      Comment


        Originally posted by Nicksdad View Post
        Unfortunately, this is on us. We run from researcher to researcher like teenage girls run from one boy-band to another boy-band. Whether it be Dr. Davies, Dr. Kessler, Frank Reynolds, Dr. Silver, or even Dr. Young, we show how really desperate we are. The reality is by the time anyone's research appears to be ready to come out of a lab, somebody else has a better idea and the earlier hope and research gets dropped. There will never be incremental steps to a cure, who wants to invest money for a trial when there is already a "better idea" in a different lab someplace.
        I agree with your considerations, but I also think that too often we get excited about research that has weak evidence that can provide real benefits to us.
        Any therapy need to show robust effects on animal study to have a chance to work on people. We have seen several failures in clinical trials, one example is the NOGO antibody, a very costly failure that some researchers had predicted well in advance.

        Or consider Neuralstem SCI trial. They did animal studies just on acute SCI that showed modest recovery and now they did 4 patients with chronic SCI.
        Guess what? It does not work.

        Probably they went straight on chronics because they didn't have money to do an acute trial, but they should have done chronic animal studies, not acute. Maybe their approach has a real potential (probably not) that could have been identified with proper animal studies that will be lost if the company will go bankrupt..

        You may want to watch this video at min 25. https://vimeo.com/142002240 Unfortunately I am afraid we need to do more work in the labs to come up with something that really works and that will not become obsolete in a year, but we have aim high.
        In God we trust; all others bring data. - Edwards Deming

        Comment


          Originally posted by Charles Hansen View Post
          In my experience there are two problems here. Withe regards to "We run from researcher to researcher like teenage girls run from one boy-band to another boy-band", I have seen this and been totally mystified. When I look at the researchers, I look at their results. When viewed in this light, there are clearly some researchers who are far ahead of other researchers. I honestly don't understand the criteria the members here are applying. To me, anything besides results is like going to the next "boy band" because they have a new hair style or a new style of clothing. In contrast, the results are the results, and those stay the same and are inarguable.

          A lot of people went to a different researcher because they were doing "human trials". Why? There were no preliminary results I saw that gave any indication that the human trials would be effective. To my mind, that is as silly as chasing the next new "boy band" because they have new hair cuts. I don't chase "boy bands" for the same reason. I judge music on its musical merits, and not how cute the "boy band" hair cuts are, how impressive the light show at the concert is, or even (in the case of Pink Floyd) how big the inflatable animals are. None of that changes how good the music is, and none of these other trappings change the results produced by the researchers.

          The second problem has two facets, both related to money:

          1) Big pharma runs our current medical industry. The LAST thing big pharma wants is to cure people. There is no profit in that. In the US, all publicly-held corporations must maximize profits for their shareholders BY LAW. This results in the disgraceful spectacles such as Big Tobacco executives lying before the US Senate under sworn testimony that cigarettes are perfectly safe. The reality is that the tobacco companies had internal data going back for decades linking smoking to lung cancer, heart disease, emphysema, and stroke. Their response? Selective breeding of their tobacco to increase the nicotine content to make the cigarettes more addictive, and thereby more profitable.

          This is capitalism at its "finest", and exactly how big pharma operates. Curing a person is the LAST thing they want. If they actually cured a patient of ANYTHING, they would lose all revenue. Their ideal drug is something patentable that is necessary to live. A good example is blood-pressure medication. You have to take it every day for the rest of your life. By keeping you alive, they assure that you will be a steady source of income and profit. So they want the drug to "work" - not by actually CURING you, but instead by simply treating the symptoms. That will keep you alive and buying the drug. But if they actually cured you, you would only be a one-time customer....

          2) The National Institute of Health is the only other large source of funding. Ideally this would be used for the benefit of all citizens. There are at least two major problems:

          a) The Republican party is trying to dismantle all governmental institutions, as they insist that all government is bad and that private enterprise (through "competition") is more efficient. See point #1 above.

          b) The government appoints "experts" that decide who should be funded and who should not be funded. Just as with all institutions, this process becomes corrupted by money and politics. The result is that there are professional "researchers" whose main talents are to write compelling grants and have good political connections with those on the committee of "experts" who decide which projects get funded. They spend at least 50% of their actual working time writing grants to justify the existence of the departments they supervise. They may or may not actually participate in actual research that produces meaningful results.

          In the meantime those of us with SCIs run like screaming teenage girls from "boy band" to "boy band" based on no actual knowledge or understanding of the science involved. That is understandable, as most of us are not actually scientists. Still one would hope that those of us who actually take time to read the papers would look at the results of the research. It baffles me completely to see that some researchers actually have produced results and most have not, yet many in the SCI community take pride in ignoring the results and flocking to the latest "boy band" for no reasons visible to me.
          I mostly agree with your considerations, but I just wanted to ask you if you are still raising money for Dr. Davies? BTW do you know why he moved away for Colorado?
          In God we trust; all others bring data. - Edwards Deming

          Comment


            Originally posted by tomsonite View Post
            You obviously have never spoken to any researcher about their career in detail. The "funded career" researchers "enjoy" so much is, more often than not, funded by grants that they have to write and acquire themselves. This takes an absurd amount of time and is quite stressful, because if they don't secure grants, they don't get research done. Often times, especially at big universities, researchers must publish X number of papers, posters, or presentations each year just to keep their jobs. However, between teaching, grant writing, and the constraints of an academic calendar little time is left to do actual research. And because many researchers must reach a quota, sometimes they publish whatever they can just to reach their quota, which takes away from time that could be spent doing more valuable research.
            The other point I left out was IRBs and regulatory bodies. "None" of the researchers fight to get their results to people? Really? None? How do you know that? I know plenty of researchers that have had to propose, re-write and re-propose, re-write and re-propose again before getting a study approved, and by the time you go through all of that to approve a study, it isn't the original design you had hoped for. Sometimes the opposite problem exists, where a study gets approved right away, but not enough people are available to staff the study, there are facility problems, etc, and a study dies.

            Many scientists do care that people are "ready to die to try." One researcher is very vocal about how he thinks "right to try" laws should be passed where people could volunteer for studies if they understand the implications of risking it all.

            I am not someone with a SCI, but I am an aspiring scientist. All of these things frustrate me, though I know not nearly as much as they frustrate you. However, I would encourage you to look more into the process of how research gets done. If you haven't already, order and read Don't Call it a Miracle from the Reeve Foundation's web site. Its available in a bunch of different formats and is free. Its a good explanation about how many scientists get caught in the never ending loop of keeping their careers afloat with grants, teaching, and rinky-dink studies just to make publication quotas.

            If you want to make a difference, contact lawmakers about getting right-to-try laws passed. Contact university presidents and tell them they need to change the system by which they rate their researchers so the scientists can actually get something done. Learn about the hurdles that exist with scientific dissemination and why its so tough to get therapies from the lab to the clinic.

            I believe if a researcher wants to get into this field, they should view it as a responsibility to get something done for the population they are trying to serve. That's how I view it and while many scientists don't think about it like that, many do as well. But it is not nearly as simple as you make it sound and statements like yours only fracture the community even more and hurt progress.
            Wonderful job explaining these important insights. Thanks for taking the time from your busy schedule to share!
            http://spinalcordresearchandadvocacy.wordpress.com/

            Comment


              As expected you insult. You seem to enjoy others misery. Just to update you I have acquired Nembutal since overdosing on opioids made me puke and crosseyed. I think that will be easy and not messy. Enjoy your role as the cripple behavior policewoman.

              Comment


                Should we chase this guy ?
                www.MiracleofWalk.com

                Miracles are not contrary to nature, but only contrary
                to what we know about nature
                Saint Augustine

                Comment


                  Originally posted by Charles Hansen View Post
                  In my experience there are two problems here. Withe regards to "We run from researcher to researcher like teenage girls run from one boy-band to another boy-band", I have seen this and been totally mystified. When I look at the researchers, I look at their results. When viewed in this light, there are clearly some researchers who are far ahead of other researchers. I honestly don't understand the criteria the members here are applying. To me, anything besides results is like going to the next "boy band" because they have a new hair style or a new style of clothing. In contrast, the results are the results, and those stay the same and are inarguable.

                  A lot of people went to a different researcher because they were doing "human trials". Why? There were no preliminary results I saw that gave any indication that the human trials would be effective. To my mind, that is as silly as chasing the next new "boy band" because they have new hair cuts. I don't chase "boy bands" for the same reason. I judge music on its musical merits, and not how cute the "boy band" hair cuts are, how impressive the light show at the concert is, or even (in the case of Pink Floyd) how big the inflatable animals are. None of that changes how good the music is, and none of these other trappings change the results produced by the researchers.

                  The second problem has two facets, both related to money:

                  1) Big pharma runs our current medical industry. The LAST thing big pharma wants is to cure people. There is no profit in that. In the US, all publicly-held corporations must maximize profits for their shareholders BY LAW. This results in the disgraceful spectacles such as Big Tobacco executives lying before the US Senate under sworn testimony that cigarettes are perfectly safe. The reality is that the tobacco companies had internal data going back for decades linking smoking to lung cancer, heart disease, emphysema, and stroke. Their response? Selective breeding of their tobacco to increase the nicotine content to make the cigarettes more addictive, and thereby more profitable.

                  This is capitalism at its "finest", and exactly how big pharma operates. Curing a person is the LAST thing they want. If they actually cured a patient of ANYTHING, they would lose all revenue. Their ideal drug is something patentable that is necessary to live. A good example is blood-pressure medication. You have to take it every day for the rest of your life. By keeping you alive, they assure that you will be a steady source of income and profit. So they want the drug to "work" - not by actually CURING you, but instead by simply treating the symptoms. That will keep you alive and buying the drug. But if they actually cured you, you would only be a one-time customer....

                  2) The National Institute of Health is the only other large source of funding. Ideally this would be used for the benefit of all citizens. There are at least two major problems:

                  a) The Republican party is trying to dismantle all governmental institutions, as they insist that all government is bad and that private enterprise (through "competition") is more efficient. See point #1 above.

                  b) The government appoints "experts" that decide who should be funded and who should not be funded. Just as with all institutions, this process becomes corrupted by money and politics. The result is that there are professional "researchers" whose main talents are to write compelling grants and have good political connections with those on the committee of "experts" who decide which projects get funded. They spend at least 50% of their actual working time writing grants to justify the existence of the departments they supervise. They may or may not actually participate in actual research that produces meaningful results.

                  In the meantime those of us with SCIs run like screaming teenage girls from "boy band" to "boy band" based on no actual knowledge or understanding of the science involved. That is understandable, as most of us are not actually scientists. Still one would hope that those of us who actually take time to read the papers would look at the results of the research. It baffles me completely to see that some researchers actually have produced results and most have not, yet many in the SCI community take pride in ignoring the results and flocking to the latest "boy band" for no reasons visible to me.

                  Wow. My posts are not generally the type that get any attention. I don't say much about anything often, I am a self-described back-of-the-classroom A student. There was no intent to offend. When I got hurt, the researcher that had everyone's attention was Dr. Lima and OEGs he'd rip out from behind your eyeballs through your nose. My post could have used more words. I would love incremental steps, I miss writing on paper, holding a hot cup of coffee. . . too many things. . . But, people in general are not much different than the dogs in the movie Up, mid sentence yelling "squirrel". Whether it is decorin, which in 2007 everyone read "a phase1 clinical trial team was assembled for a trial that would be less than two years away", or chondroitinase it doesn't really matter much. Before it can be human-tried something else in someone else's lab will get the attention of the people with the funding, and will have our attention as well.
                  please . . .test what you already know; and give us what you have. we may not be dying, but we certainly are not living either

                  Comment


                    My condolences with us all. It took 31yrs and age 43yrs to accept that this is it. Stubborn I am. Damn my grandfather from Scotland!
                    Last edited by lynnifer; 15 Feb 2016, 5:22 AM.
                    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                    Comment


                      Originally posted by Nicksdad View Post
                      Wow. My posts are not generally the type that get any attention. I don't say much about anything often, I am a self-described back-of-the-classroom A student. There was no intent to offend. When I got hurt, the researcher that had everyone's attention was Dr. Lima and OEGs he'd rip out from behind your eyeballs through your nose. My post could have used more words. I would love incremental steps, I miss writing on paper, holding a hot cup of coffee. . . too many things. . . But, people in general are not much different than the dogs in the movie Up, mid sentence yelling "squirrel". Whether it is decorin, which in 2007 everyone read "a phase1 clinical trial team was assembled for a trial that would be less than two years away", or chondroitinase it doesn't really matter much. Before it can be human-tried something else in someone else's lab will get the attention of the people with the funding, and will have our attention as well.
                      If you are old enough to remember Watergate, you will know this quote. If not, rent "All the President's Men".

                      "Follow the results."

                      Comment


                        Originally posted by lynnifer View Post
                        My condolences with us all. It took 31yrs and age 43yrs to accept that this is it. Stubborn I am. Damn my grandfather from Scotland!
                        Are you old enough to remember the song by Donovan, "Jennifer, Juniper"?

                        Bless your grandfather from Scotland. If you weren't so stubborn, you wouldn't be with us today. This is not it. There is more to come. Follow the results. In the meantime, the currently broken system can be fixed. I am clear that the best thing we can do is volunteer for two organizations that are working very hard to remove money and corruption from the US political process and allows corporate profits to overshadow the common interests of the people.

                        http://represent.us
                        http://berniesanders.com

                        Comment


                          Yes a former boss used to sing that to me all the time.

                          I'm Canadian. We have our corrupt Rick Hansen evil corp here.
                          Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                          T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                          Comment


                            Originally posted by paolocipolla View Post
                            Or consider Neuralstem SCI trial. They did animal studies just on acute SCI that showed modest recovery and now they did 4 patients with chronic SCI. Guess what? It does not work.
                            They just finished injecting the last of 4 patients in the Phase 1 safety trial. I don't hear Dr. Ciacci saying they were not safe or feasible to implant in the cord. LINK (He did show an adverse event of acne on a couple people, one person had nausea and one had abdominal distress).
                            Last edited by GRAMMY; 16 Feb 2016, 1:02 PM.
                            http://spinalcordresearchandadvocacy.wordpress.com/

                            Comment


                              Originally posted by GRAMMY View Post
                              They just finished injecting the last of 4 patients in the Phase 1 safety trial. I don't hear Dr. Ciacci saying they were not safe or feasible to implant in the cord. LINK (He did show an adverse event of acne on a couple people, one person had nausea and one had abdominal distress).
                              Thanks for the link, I have watched it carefully few weeks ago. If I got things right patients didn't show any recovery so far. I predict patients will never show significant recovery.

                              Time will tell.
                              In God we trust; all others bring data. - Edwards Deming

                              Comment


                                Originally posted by paolocipolla View Post
                                Time will tell.
                                Yes, Paolo, it always does.

                                Comment

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