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    Originally posted by Charles Hansen View Post
    And just out of curiosity, what makes you think that Dr. Davies was wrong about Decoriin?
    Good point. I remember reading that other labs could not replicate his results. Then nothing. It is easy to jump to the wrong conclusion.

    Comment


      Originally posted by Charles Hansen View Post
      He has spoken of a group using Decorin to treat (eg, reshape) the corneas of persons with vision deficiencies so that they don't need to wear corrective lenses.
      I'd never heard about Decorin reshaping the corneas of eyeballs. Remarkable capabilities. I wonder how it does that? Would it have to be injected into the eye, or just used as an eyedrop I wonder...People would no longer need to have glasses or contact lenses for good eyesight. That would be revolutionary in the Ophthalmology field.
      http://spinalcordresearchandadvocacy.wordpress.com/

      Comment


        Dr. Davies could be right about many things. Unfortunately, his communication with this community is pathetic at best.

        He solicited funds and that when questions were proposed; he left us high and dry. Honestly, I hope he's right and incredibly successful – but I know personally from speaking with many others that he fractured trust between researchers and patients.

        Comment


          Originally posted by amole View Post
          Good point. I remember reading that other labs could not replicate his results. Then nothing. It is easy to jump to the wrong conclusion.
          Yes, there were some posts to that effect earlier in this thread. After speaking to Dr. Davies about that point (very briefly), it was clear to me that it is far too early to tell if Decorin clearly is or is not effective.

          We have two contradictory sets of evidence and there is obviously some difference in the way the experiments were carried out (or reported, if one thinks that the researchers are liars). Dr. Davies was confident that he knew the reasons for the failures of the other groups. I don't have enough knowledge to say if his claims are accurate, but my belief is that they are.

          Comment


            Originally posted by GRAMMY View Post
            I'd never heard about Decorin reshaping the corneas of eyeballs. Remarkable capabilities. I wonder how it does that? Would it have to be injected into the eye, or just used as an eyedrop I wonder...People would no longer need to have glasses or contact lenses for good eyesight. That would be revolutionary in the Ophthalmology field.
            There is more involved in the technique than just putting drops of Decorin in the eyes. I probably shouldn't say more because I don't know how much of this was confidential. Also my understanding was that it did not provide permanent relief, but would have to be repeated periodically. And yes, it would be at least as revolutionary as laser keratotomy.

            Comment


              Originally posted by Chaz19 View Post
              Dr. Davies could be right about many things. Unfortunately, his communication with this community is pathetic at best.
              And can anyone here look me in the eye and say that the converse is not also true? There's an old saying about stones and glass houses that applies here, I think.

              Originally posted by Chaz19 View Post
              Honestly, I hope he's right and incredibly successful
              Me, too.

              Comment


                Originally posted by Charles Hansen View Post
                There is more involved in the technique than just putting drops of Decorin in the eyes. I probably shouldn't say more because I don't know how much of this was confidential. Also my understanding was that it did not provide permanent relief, but would have to be repeated periodically. And yes, it would be at least as revolutionary as laser keratotomy.
                Actually, none of it is confidential information. I don't know if Euclid Systems Corporation has bothered to move any further with the FDA on their product called "Stableyz" which was supposed to be a decorin eye drop treatment proposed years ago. Instead they now have an overnight lense that can simply be worn for reshaping that doesn't require surgery, injections or drops. It's called Emerald.
                http://www.euclidsys.com/emerald/emframe1.htm

                http://www.fda.gov/MedicalDevices/Pr.../ucm081099.htm

                http://www.rudderwc.com/EUCLID_S_SUMMARY.pdf

                Even if they eventually put "Stableyz" brand droplets in the eye to help prolong the reshape being done by the contact lenses that are worn overnight, a neurosurgeon to "off label" treatments in the dura for a neurological spinal cord injury affecting the central nervous system? uh, I think not...

                In addition, decorin has been used in several cosmetic wrinkle cream brands for years, but that hasn't and won't translate into an off label cure for spinal cord injury any more than eye drops will. On what premise would a neurosurgeon defend himself in a malpractice suit for injecting eye drops into someones spinal cord off label? There's still little to no credible efficacy data even being peer reviewed and published for SCI and yet this thread will reach it's 6th year birthday in August.
                Last edited by GRAMMY; 20 Jan 2013, 2:18 AM.
                http://spinalcordresearchandadvocacy.wordpress.com/

                Comment


                  Originally posted by GRAMMY View Post
                  Actually, none of it is confidential information.
                  Thank you for looking that up Grammy. I'm not deliberately trying to be mysterious. I don't have the time for looking everything up, and I'm never sure what things Dr. Davies tells me are confidential or not. I know that I (and also some other people) have created problems for Dr. Davies by repeating things that we should not have.

                  Originally posted by GRAMMY View Post
                  There's still little to no credible efficacy data even being peer reviewed and published for SCI and yet this thread will reach it's 6th year birthday in August.
                  So what do you propose, Grammy? Should we crucify him because his work is taking longer than he thought it would? Is there somebody else out there who is doing better work than Dr. Davies?

                  Some groups have begun human trials (that as far as I can tell, are having little to no results). How many years have those researchers been working in the field before beginning human trials? Should we crucify them because they had been working for 20 years before beginning human trials?

                  Comment


                    Charlie, seriously nobody needs to crucify anyone. I don't believe in being unkind even though I want a cure as bad as anyone. There are hundreds of labs around the world that are working on neuro injury or disease. The vast majority of labs never actually have anything coming out for a human trial. Some labs move from basic science discovery into more progressive studies within the same avenue. Some labs move sideways and cross over to basic research on different projects if the ones they're working on turn out to only show meager efficacy or poor progress towards a therapy or difficulty in gaining data that shows promise. They have oversight measures.

                    The primary drivers today in research are funding, collaboration and verified robust data. If any one of the drivers are missing or become lackluster, the research generally stagnates and doesn't thrive or even survive.

                    When biotechs and venture capitalists are out scouting for the next big win for the market, they have those scouts using some tough criteria and measures. They're not banking on kisses and promises. They need data they can reproduce for the market and a therapy or drug that is needed so they can make money.

                    The post 6 years ago that started this thread was about a lab that was focused exclusively on reversing chronic SCI. As you can see over the last 6 years the community provided the first piece which was funding to have the chronic experiments done. "Collaborations" never happened and no chronic "data" was ever published or summarized for those contributing to the scientific project. Even if the experiments proved fruitless and unworthy of proceeding, it would have been perfectly acceptable and very understandable. We know that a cure is tough for chronics.

                    Perhaps in hindsight: A scientific advisory board to help design the chronic research project would have been in order. Clear definitions on what constitutes an acceptable time frame for chronic rats. Clear definitions of what injury type would have been scientifically acceptable and what level. A clear definition of when the project needed to be completed. A final summary or published data due on the results of the completed experiments. This did not happen for the researcher or the community. It was a train wreck because of the lack of 2 key elements (no collaborations and no verifiable data) both of which a scientific advisory board could have helped with in putting together the chronic experiments that were supposed to happen but didn't.

                    But, some very valuable lessons have been learned along the way for both the scientific community and advocates wanting to see chronic research progress further.
                    http://spinalcordresearchandadvocacy.wordpress.com/

                    Comment


                      Grammy,

                      You write as though Dr. Davies has thrown in the towel and is no longer performing any research. Why?

                      Thanks,
                      Charlie

                      Comment


                        Originally posted by Charles Hansen View Post
                        Grammy,

                        You write as though Dr. Davies has thrown in the towel and is no longer performing any research. Why?

                        Thanks,
                        Charlie
                        No, I apologize Charlie. I did not mean that at all. I have no idea what research project he may or may not be working on. The last I knew he was working on 12 day unilateral injury models. His research thus far has all been in 12 day or less and I simply don't follow the acute labs too closely.

                        I follow research on chronic SCI lab projects and try to keep pace with the experiments and progress working in that particular arena. I can't say the acute work in Davies lab is even on my radar right now.
                        http://spinalcordresearchandadvocacy.wordpress.com/

                        Comment


                          Originally posted by Charles Hansen View Post
                          Is there somebody else out there who is doing better work than Dr. Davies?
                          Yes there is

                          Comment


                            Originally posted by GRAMMY View Post
                            No, I apologize Charlie. I did not mean that at all. I have no idea what research project he may or may not be working on. The last I knew he was working on 12 day unilateral injury models. His research thus far has all been in 12 day or less and I simply don't follow the acute labs too closely.

                            I follow research on chronic SCI lab projects and try to keep pace with the experiments and progress working in that particular arena. I can't say the acute work in Davies lab is even on my radar right now.
                            Grammy,

                            I have to say that you certainly have me confused. In so many areas you have a great deal of knowledge to share, but other areas I am baffled by some of the things you say.

                            Lab rats have a typical lifespan of 24 months. If I recall correctly, they reach maturity at 3 months (12 weeks). The most stringent chronic test you could possibly give a lab rat would be to take a 3 month old (mature rat), train it for gridwalk tests, injure it and wait 9 more months (36 weeks) before treating it. That would roughly the equivalent of injuring an 18 year old human and then waiting over 30 years before treatment.

                            One couldn't wait much longer to apply treatment as the rats would be dying off from natural causes before the experiments were concluded. So when Dr. Davies most recent decorin experiments waited 12 days post-injury before treatment, that is at least the equivalent of waiting over 12 months to treat a human.

                            Twelve days does not qualify as acute studies in humans, and it is FAR from acute studies in rats. So if I were you, I would definitely keep Dr. Davies on your radar, at the very least.

                            Thanks,
                            Charlie
                            Last edited by Charles Hansen; 22 Jan 2013, 2:49 AM.

                            Comment


                              Originally posted by Christopher Paddon View Post
                              Yes there is
                              Hello Christopher,

                              No need to be snarky. Just let us know who is doing better work, what they are doing, and what they have accomplished.

                              Thanks,
                              Charlie

                              PS -- Nice guitar in your avatar. Looks like an ES355 to me. Too nice to be an old one (unless you're a millionaire), so I'd guess a re-issue. Can you still play? I can't. At about T6 I have no trunk control and when I try to play I just fall over. I have to support myself with one arm, which makes it difficult to play.

                              Comment


                                Yeah I was being 'snarky' - too many scientists to mention really - Oswald Steward, Jerry Silver, Geoffrey Raisman - there are loads more.

                                That's not my 355 but I do have a 1961 355, a 1962 335 and a 1960 345 which I have collected over the years (plus a couple of custom shop ones). I'm certainly not a millionaire but I am an enthusiast and a really good musician, if I do say so myself. I am a complete T7 but I have no problem playing the guitar which I have done all of my 30 years in a chair. I am in a gigging blues and rock band.

                                It's odd how such similar injuries affect people differently. I saw it all the time back in the spinal unit 30 years ago - we were all expected to do archery, wheelchair basketball and wheelchair races. Apart from the fact that I had no interest in disabled sport it seemed incredibly unfair as each disability was so different from another.

                                I'm not sure why you can't play the guitar - I have no trunk muscle control.

                                Comment

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