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Thread: Cheer me up

  1. #31
    Quote Originally Posted by Curt Leatherbee View Post
    Ya, but how much good does it do? Very little from what I've seen.
    When there are NO therapies, a little is better is than nothing.

    Its a start, we all need to get behind anything that will come to market. Success of the first thing, will lead to more. Negativity to the first thing will lead to nothing more.

  2. #32
    Quote Originally Posted by niallel View Post
    When there are NO therapies, a little is better is than nothing.

    Its a start, we all need to get behind anything that will come to market. Success of the first thing, will lead to more. Negativity to the first thing will lead to nothing more.
    I understand your point of view as it has been like mine in the past, but after seeing several lines of research and clinical trials fail I believe we should have concentrated money in lines of research really looking at getting us out of chairs rather than improving a bit our daily life. The approach you suggest is reasonable, but is a loosing approach from what I have seen.

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

  3. #33
    Quote Originally Posted by paolocipolla View Post
    I understand your point of view as it has been like mine in the past, but after seeing several lines of research and clinical trials fail I believe we should have concentrated money in lines of research really looking at getting us out of chairs rather than improving a bit our daily life. The approach you suggest is reasonable, but is a loosing approach from what I have seen.

    Paolo
    I suppose it depends on the returns it gives. Moving your legs a little isn't worth anything to me, but being able to stand would be.
    For others if it lets them regulate their temperature, or gives them hand grip it could be a massive win.

    Another way of looking at it would be if estim was added on top of another treatment, it could boost the results there as well. So today it might not be amazing, but added to stem cells or growth factors it might boost the effects of those.

    I'd love there to be something else coming to market soon, let me know if there are other things that might happen in the next 2 years?
    Hopefully there is and its being worked on in secret and will come out to surprise us.

    On your other point, which lines of research do you think are going to be the winners?

  4. #34
    Quote Originally Posted by niallel View Post
    I suppose it depends on the returns it gives. Moving your legs a little isn't worth anything to me, but being able to stand would be.
    For others if it lets them regulate their temperature, or gives them hand grip it could be a massive win.

    Another way of looking at it would be if estim was added on top of another treatment, it could boost the results there as well. So today it might not be amazing, but added to stem cells or growth factors it might boost the effects of those.

    I'd love there to be something else coming to market soon, let me know if there are other things that might happen in the next 2 years?
    Hopefully there is and its being worked on in secret and will come out to surprise us.

    On your other point, which lines of research do you think are going to be the winners?
    Those are my exact thoughts too. For a quad like myself, the ability to regulate my body temperature, improve the blood pressure, to get even a little bit of hand function and triceps, and some trunk control would actually completely change my life by giving me the so much needed independence. But maybe for some paras if it’s not walking and bbs improvement it’s not worth their attention. Btw, the electric stimulation could and did help people with improving sexual function by getting better erections and also get some sensation back in the genital area making sex pleasurable again. The other big advantage with the transcutaneous stimulators is that you can customise it and stimulate whatever you need most.

  5. #35
    Quote Originally Posted by niallel View Post
    I suppose it depends on the returns it gives. Moving your legs a little isn't worth anything to me, but being able to stand would be.
    For others if it lets them regulate their temperature, or gives them hand grip it could be a massive win.

    Another way of looking at it would be if estim was added on top of another treatment, it could boost the results there as well. So today it might not be amazing, but added to stem cells or growth factors it might boost the effects of those.

    I'd love there to be something else coming to market soon, let me know if there are other things that might happen in the next 2 years?
    Hopefully there is and its being worked on in secret and will come out to surprise us.

    On your other point, which lines of research do you think are going to be the winners?
    I mostly agree with your considerations.

    I meant to say that what I have seen in the past 15 years is that because there was nothing on the market it has been tried to bring something on the market at any cost even if preclinical data were very weak. That resulted in the failure of several very costly clinical trials (that could have been easily anticipated just by looking realistically at the preclinical studies). So I wonder how closer we would be to effective therapies if these money had been spent differently?
    That makes me think that it would have been better to give more support to studies that are relevant to reverse and repair damage in CHRONIC SCI with the potential to bring big functional recovery starting from breathing, hand functions, B&B, etc..
    If we base a clinical trial on a therapy that brings a little recovery on rats it is unlikely we will see any recovery at all in people. This mistake has been made too many times already.

    Also you may want to read this blog from Sam Maddox for the Reeve Foundation that is about drug companies that pulled out of neuroscience:
    http://www.spinalcordinjury-paralysis.org/blogs/18/1503

    I can’t say which line of research will be the winner (I wish someone could), but here are some random examples of the kind of studies/directions that IMO should get more funding:

    Link 1

    Link 2

    Link 3

    Link 4

    You can probably find papars not open access at this site: https://sci-hub.tw

    Just my opinion.... and let's hope some secret work is really going on!

    Paolo
    Last edited by paolocipolla; 04-09-2018 at 06:48 PM.
    In God we trust; all others bring data. - Edwards Deming

  6. #36
    Quote Originally Posted by paolocipolla View Post
    I mostly agree with your considerations.

    I meant to say that what I have seen in the past 15 years is that because there was nothing on the market it has been tried to bring something on the market at any cost even if preclinical data were very weak. That resulted in the failure of several very costly clinical trials (that could have been easily anticipated just by looking realistically at the preclinical studies). So I wonder how closer we would be to effective therapies if these money had been spent differently?
    That makes me think that it would have been better to give more support to studies that are relevant to reverse and repair damage in CHRONIC SCI with the potential to bring big functional recovery starting from breathing, hand functions, B&B, etc..
    If we base a clinical trial on a therapy that brings a little recovery on rats it is unlikely we will see any recovery at all in people. This mistake has been made too many times already.

    Also you may want to read this blog from Sam Maddox for the Reeve Foundation that is about drug companies that pulled out of neuroscience:
    http://www.spinalcordinjury-paralysis.org/blogs/18/1503

    I can’t say which line of research will be the winner (I wish someone could), but here are some random examples of the kind of studies/directions that IMO should get more funding:

    Link 1

    Link 2

    Link 3

    Link 4

    You can probably find papars not open access at this site: https://sci-hub.tw

    Just my opinion.... and let's hope some secret work is really going on!

    Paolo
    Thanks Paolo, some interesting things in there I'd not heard of before.

    I'd be happy to give towards these type of research projects. The biggest problem is the model, which follows along from the article you quote.
    In thats that researchers do some trials, then thats it. Nothing more happens with them.

    I've only been donating to projects that have a plan all the way to market, but unfortunately I have no way of knowing if they will follow through to the end or get interested in something else along the way.
    Obviously they stop if its no good, but there are so many things that showed promise and then never went further.

    I'm not picking on the researchers, its the model that they are part of that is failing. If an organisation has a commitment from the start to take things to market, they can then replace researchers with others if they leave. But if there is no overall body with a commitment to the end its always going to break.

  7. #37
    Quote Originally Posted by niallel View Post
    Thanks Paolo, some interesting things in there I'd not heard of before.

    I'd be happy to give towards these type of research projects. The biggest problem is the model, which follows along from the article you quote.
    In thats that researchers do some trials, then thats it. Nothing more happens with them.

    I've only been donating to projects that have a plan all the way to market, but unfortunately I have no way of knowing if they will follow through to the end or get interested in something else along the way.
    Obviously they stop if its no good, but there are so many things that showed promise and then never went further.

    I'm not picking on the researchers, its the model that they are part of that is failing. If an organisation has a commitment from the start to take things to market, they can then replace researchers with others if they leave. But if there is no overall body with a commitment to the end its always going to break.
    You hit the nail on the head, I agree 100%. I'm in a Rehabilitation Science PhD program right now, and am slowly coming to the realization that biomedical research, as an industry, is not optimally set up to deliver therapies to almost any patient population. It takes thinking beyond the research world to get that done, but that type of thinking is often stifled by other responsibilities placed on researchers by their institutions. To be in a position where you can even think about taking a potential therapy to market is quite a unique situation.

  8. #38
    Quote Originally Posted by tomsonite View Post
    You hit the nail on the head, I agree 100%. I'm in a Rehabilitation Science PhD program right now, and am slowly coming to the realization that biomedical research, as an industry, is not optimally set up to deliver therapies to almost any patient population. It takes thinking beyond the research world to get that done, but that type of thinking is often stifled by other responsibilities placed on researchers by their institutions. To be in a position where you can even think about taking a potential therapy to market is quite a unique situation.
    Thanks for the agreement from someone on the inside. I wonder how this could change? It sounds like an area that is ripe for disruption, as you say for the whole biomedical research industry.

    Normally with disruption there are parties that lose out, but maybe with the right structure everyone could win.

  9. #39
    Quote Originally Posted by niallel View Post
    Thanks for the agreement from someone on the inside. I wonder how this could change? It sounds like an area that is ripe for disruption, as you say for the whole biomedical research industry.

    Normally with disruption there are parties that lose out, but maybe with the right structure everyone could win.
    As a PhD student, I'm low on the totem pole, and admittedly probably naive to many of the nuances of the entire biomedical research industry. That being said, at least with government-funded, academic-based research in the United States, there is no incentive for scientists to be the drivers to get therapies for patient populations to the market. In many ways, even if they wanted to, the other obligations placed on them by academic jobs leaves so little time for those efforts that it would essentially be impossible.

    How can it change? It's analogous to asking how can we reduce gravity so that people can fly. In other words, the issues are so widespread and run so deep that it seems nuts to even think about.

    While the limitations for scientists to drive new therapies to the market are numerous, the biggest hurdle, in my opinion, is culture - most scientists just don't think this way. So many students are pushed in to PhD programs solely because they get good grades, write well, or ask complex questions. Very rarely do people get in to science to solve specific problems, be it SCI, MS, cancer, muscle disorders...most young minds are encouraged to get into science because they seem curious, and are encouraged to pursue knowledge for the sake of knowledge. I don't even think this is necessarily a bad thing - knowledge for the sake of knowledge is useful and has its place. But it will very rarely motivate someone to pursue science with the sole purpose of solving any specific medical issue. There is a reason the SCI community knows the names Harkema, Edgerton, Blackmore, Silver...they are the outliers to this way of thinking.

    Again, I am admitting my own possible naivety that leads to my cynicism. I welcome any scientists with more gray hair than me to put me in my place if I'm off-base.

  10. #40
    Quote Originally Posted by tomsonite View Post
    As a PhD student, I'm low on the totem pole, and admittedly probably naive to many of the nuances of the entire biomedical research industry. That being said, at least with government-funded, academic-based research in the United States, there is no incentive for scientists to be the drivers to get therapies for patient populations to the market. In many ways, even if they wanted to, the other obligations placed on them by academic jobs leaves so little time for those efforts that it would essentially be impossible.

    How can it change? It's analogous to asking how can we reduce gravity so that people can fly. In other words, the issues are so widespread and run so deep that it seems nuts to even think about.

    While the limitations for scientists to drive new therapies to the market are numerous, the biggest hurdle, in my opinion, is culture - most scientists just don't think this way. So many students are pushed in to PhD programs solely because they get good grades, write well, or ask complex questions. Very rarely do people get in to science to solve specific problems, be it SCI, MS, cancer, muscle disorders...most young minds are encouraged to get into science because they seem curious, and are encouraged to pursue knowledge for the sake of knowledge. I don't even think this is necessarily a bad thing - knowledge for the sake of knowledge is useful and has its place. But it will very rarely motivate someone to pursue science with the sole purpose of solving any specific medical issue. There is a reason the SCI community knows the names Harkema, Edgerton, Blackmore, Silver...they are the outliers to this way of thinking.
    And these scientists listed have also been cultivated into relationships with people connected to SCI. Most scientists working in the field get no emails asking questions about their lab work and publications or receive words of encouragement, extra funding or see the faces of people connected to SCI at conferences or in their labs. The silence is deafening.

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