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Is It Time To Get Over Stemcells And Epidural Stimulation?

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    Is It Time To Get Over Stemcells And Epidural Stimulation?

    has anyone here been Watching the advances in Optic nerve regeneration and it's relevancy to Spinal cord regeneration utilizing something called "protrudin"?...not too informed...wanna learn more about it
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    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

    #2
    I feel I need to expand and try to clarify my position...I mean; "whats next?", I am not simply trying to belittle what Wise is accomplishing or attempting to accomplish but even Wise himself has said that this isn't going to be a cure and this is true...there is still much to do back at the basic research level ...same thing goes for Epidural stimulation ...Paolo was wrong by being rather harsh and abrasive but his overall message is proving to be true, so where do we look to from here if we really want to be cured?
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    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

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      #3
      Unfortunately, spinal cord injury is a black hole. Why fix what you can keep studying? Before anything gets into and out of trials, there is a new discovery that diverts everyone’s attention. It will require a combination of things; perhaps Renetx, Nerogel, and Epidural Stimulation. Nothing like a combination trial will ever happen without an Elon Musk or an Operation Warpspeed. We all know there is no cure, what is frustrating is there is no pathway to get whatever improvement current science can give us. Long ago there was the CDRPA that was supposed to encourage collaboration and it was not worth the paper used to write congress asking to support it. Evidently being bored and miserable at barbecues watching your beer get warm while everyone else is playing volleyball doesn’t qualify you under the right to try law. So .. . . . hang on, I forgot your question .. . . . oh yeah, it doesn’t really matter what’s next because until all of the therapies can be squished into one pill capsule with the only warning to not take with grapefruit juice you will never see it.
      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


        #4
        Originally posted by Nicksdad View Post
        Unfortunately, spinal cord injury is a black hole. Why fix what you can keep studying? Before anything gets into and out of trials, there is a new discovery that diverts everyone’s attention. It will require a combination of things; perhaps Renetx, Nerogel, and Epidural Stimulation. Nothing like a combination trial will ever happen without an Elon Musk or an Operation Warpspeed. We all know there is no cure, what is frustrating is there is no pathway to get whatever improvement current science can give us. Long ago there was the CDRPA that was supposed to encourage collaboration and it was not worth the paper used to write congress asking to support it. Evidently being bored and miserable at barbecues watching your beer get warm while everyone else is playing volleyball doesn’t qualify you under the right to try law. So .. . . . hang on, I forgot your question .. . . . oh yeah, it doesn’t really matter what’s next because until all of the therapies can be squished into one pill capsule with the only warning to not take with grapefruit juice you will never see it.
        have you tried Reading about "protrudin"?

        as a next step
        "That's not smog! It's SMUG!! " - randy marsh, southpark

        "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


        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


          #5
          This is kinda depessing with both stem cells and epidural stimulation and overall with SCI research. I joined in 2018 as a newly injured in hopes to learn about some exciting SCI research and but I would say a little to no progress has been with the trial. It keeps getting pushed back for some reason or another. Not depreciating all the work that Wise has been doing over the years for SCI community but to be real we are far from a real cure and for that fact far from seeing any better functional outcome. I keep hearing the sentence that "the cure is just around the corner' but personally it doesn't feel or look like it.

          I have tried autologous stem cell transplant (intrathecal) in India proved waste of money and time. Also, I have tried the 6-6-6 walking program in India that SCINet USA is planning to include in the upcoming trial. Believe you me its not as "promising" or "convincing" as it sounds. I have also talked with a bunch of patients who still do the 6-6-6 walking training and they also say that the improvement is non-existent.

          The stem cell transplant has actually become a business in India rather helping the people. And I guess SCI patients have also become a way of making money for the businesses cause they think we are better off this way.

          Again no offenses to any researcher and their work, just my 2 cents on SCI research especially including stem cells.

          Comment


            #6
            We've been given the "In 7 years talk since I was injured in '73". We have gained much in therapies and increasing our lifespans with better improvements. The advancements made in the 47 years I've been injured has been remarkable. So many poo pooed care vs. cure but if there is a cure it won't do anyone any good if they're in such bad shape they won't be capable of doing the work nec.

            I'm way past any ability for a cure. I approach dealing with this injury by maximizing my potential with what I have left. If there is going to be a cure, I need to be in shape to be able to get on the list and do the work necessary to benefit by it. If there's no cure, we need to be in shape to drag our sorry asses thru life.


            Comment


              #7
              Originally posted by lunasicc42 View Post

              have you tried Reading about "protrudin"?

              as a next step
              This falls in the category of a new discovery that diverts attention. I am happy to hear there are new discoveries. Nothing ever becomes of yesterday’s discoveries. I don’t really mean to sound negative, but it is the only way to describe the wheel that continues to go round and round. There is a new discovery, it stays in the lab forever, it is described as the next promising thing that we should see in five years out of the lab, there is a new discovery, the old promising thing never comes out of the lab and gets forgotten.
              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


                #8
                Originally posted by Nicksdad View Post
                This falls in the category of a new discovery that diverts attention. I am happy to hear there are new discoveries. Nothing ever becomes of yesterday’s discoveries. I don’t really mean to sound negative, but it is the only way to describe the wheel that continues to go round and round. There is a new discovery, it stays in the lab forever, it is described as the next promising thing that we should see in five years out of the lab, there is a new discovery, the old promising thing never comes out of the lab and gets forgotten.
                I do feel the same way as you that we hear about discoveries but they never progress out of the lab.

                Now in some cases it may be because they aren't good enough, but often it's because there is a gap in the process.

                Unless the researcher decides to start a company and move it forward you are waiting for a biotech to pick it up.The challenge is that the SCI market is either not big enough, or there are more interesting opportunities for someone who is looking to start a biotech.
                The risk for a company to take anything to market is huge, so if they are doing it for financial reward they are likely going to pick something else.

                The next problem is that researchers don't produce the necessary information to de-risk a technology enough. They don't produce things that a company wants to know - such as pharmacokinetics, pharmacodynamics or toxicology. So before a biotech can see if something is worth doing they have to spend a million or so.

                So I suppose we are waiting for someone who has a ton of money, wants a cure and doesn't care how much its going to cost to push each thing forward. They won't have to do it with one thing, they will have to do lots - no one knows what will work in humans until they try it.

                For all the hundreds of millions spent on SCI research (mainly public money), only a tiny fraction is spent on moving it out of labs (private money). If there was some balance, then we would have many things moving towards the clinic every year.

                Comment


                  #9
                  I asked this as an honest question, not like in a snarky way.
                  "That's not smog! It's SMUG!! " - randy marsh, southpark

                  "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


                  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


                    #10
                    Originally posted by lunasicc42 View Post
                    I asked this as an honest question, not like in a snarky way.
                    It didn't come across as snarky to me, it's a genuine question to ask.

                    On your point, it's obviously essential to investigate new ideas. No one knows for sure any of the existing ones will work well enough - however much research is put into them.

                    I'd doubt that research into existing things will stop, researchers tend to focus on their areas and don't seem to change direction so much. For example someone studying epidural stimulation is unlikely to stop studying it and start studying protrudin.
                    I know of researchers who are still spending money and time researching FES for example.

                    So I suppose its a case of studying more things and new ideas, all comes down to having more researchers with new ideas and, money.

                    Comment


                      #11
                      Originally posted by lunasicc42 View Post
                      I asked this as an honest question, not like in a snarky way.
                      No snarkiness assumed :-).
                      It always feels like we won’t get anything until the day comes we get everything. So what if a trial gives back arms/hands but not walking; or gives back sensation but not motor. Hands are a game changer, and being able to tell you have a pressure point is a game changer. But, giving us back anything does not seem to be the goal. The only goal is to give us back everything and that will not happen in my lifetime I’m afraid.

                      I do feel the body wants to heal itself so I think if you are not doing what you can to stay in the best shape you can you are being foolish. Some of us have more advantage than others. But I think the researchers will be surprised how much the body does on its own once they find the way to give it a spark.
                      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

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