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Thread: Stephen Davies Update

  1. #1391
    Senior Member lynnifer's Avatar
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    You can't deny a man making a living: Davies .. Huang .. Xiao Even I made a living from other people's misfortune as a 911 dispatcher.

    Silver is way out and still in lab studies but we knew this. I really do believe he is working as fast as he can within the constraints that he has.

    The e-stim there is just no excuse for ... studies until 2020 and then there will be more studies. Then again, if they came out with something now and lots of us had it implanted with insurance paying .. and then they come out with something better six months or so down the road, we'd all be pissed off. Plus they want the biggest bang for their buck. Doing that with already existing technology must be difficult.

    Why can't someone come up with a spider chair so I can traverse any terrain I want and do stairs? Climb a mountain if I wanted?
    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

  2. #1392
    Quote Originally Posted by Dlevy View Post
    My suicide would go unnoticed. And Grammy spare me the insults please.
    Yes, you've posted that before. I think you are right, Dr. Davies would not know you were gone.

  3. #1393
    Quote Originally Posted by lynnifer View Post
    Even I made a living from other people's misfortune as a 911 dispatcher.

    Why can't someone come up with a spider chair so I can traverse any terrain I want and do stairs? Climb a mountain if I wanted?
    The work you engaged in every day was critical in saving many lives behind the scenes. I can't even fathom the pressure you were under every time the phone rang. A spider chair...I bet some smart kid will get something like that all figured out. I've seen the robotic competitions and they're unbelievable.

  4. #1394
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    Quote Originally Posted by lynnifer View Post
    You can't deny a man making a living: Davies .. Huang .. Xiao Even I made a living from other people's misfortune as a 911 dispatcher.

    Silver is way out and still in lab studies but we knew this. I really do believe he is working as fast as he can within the constraints that he has.

    The e-stim there is just no excuse for ... studies until 2020 and then there will be more studies. Then again, if they came out with something now and lots of us had it implanted with insurance paying .. and then they come out with something better six months or so down the road, we'd all be pissed off. Plus they want the biggest bang for their buck. Doing that with already existing technology must be difficult.

    Why can't someone come up with a spider chair so I can traverse any terrain I want and do stairs? Climb a mountain if I wanted?
    Perhaps some body could develop a broom that flies!

  5. #1395
    Quote 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.
    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.

  6. #1396
    Quote 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.

  7. #1397
    Quote 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

  8. #1398
    Quote 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

  9. #1399
    Quote 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

  10. #1400
    Quote 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!

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