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    Originally posted by Scott Pruett
    not false, just not credible [enough].
    thats subjective...

    Comment


      Originally posted by Eric.S
      why is it so far fetched that an experimental procedure may provide the cure or atleast be some what effective? not even saying that any present procedures work, but whats to say that clinical trials will be the only way to provide a true procedure? I feel the cure coming from clinical trials is just as far fetched as any method. something either works or it doesn't the structure of the procedure experiment or trial should have no effect..

      I agree. Either it works or it doesn't. I think the key is collaboration and scientists DO NOT want to collaborate with eachother. The industry is becoming more competitive and we will suffer until people collaborate. The men/scientists that are overly passionate about a cure and dream of it in their sleep, and cant wait to wake up to see what their rodents are doing are the guys we should be looking at. I believe that in the coming years we will hear of more scientists names besides the same old Miami Project, Keirstead, Geron and McDonald who are all NOT making chronic progress. People can bull shit all they want for fame but at the end of the day I don't believe any of these guys will catch the worm.

      I respect all these guys for trying to hustle and do their thing, don't get me wrong but they are famous to us SCI injured but in the real world as sad as it is they are peanuts and popcorn. People who are on the cutting edge of research and technology in medicine as we know it to reverse paralysis should be more headlining news than the celebrity oriented tabloid media that win before these issues.. ..this stuff is really bigger than life. Saving lives and curing people are far more important I have learned since my injury than what kind of jeans or purse you have. Unless you have a SCI or are affiliated with this field do you know who these people are. Nobody else does. That is reality.
      Last edited by spidergirl; 17 Jun 2007, 9:41 PM.
      Birds Fly in Flocks, but Eagles Fly Alone...

      Comment


        Originally posted by Eric.S
        does that automatically deem the procedure false? the point being the trial is just the data portion of the procedure it doesnt make the procedure work or not.
        Animal tests with positive results means that it's more likely to work in humans,
        than a procedure with no previous animal tests.

        Comment


          Originally posted by spidergirl
          scientists DO NOT want to collaborate with eachother
          • This is simply not true. The spinal cord injury scientists are among the most collaborative, compared to other fields. While scientists are competitive, once the work is published, it is rapidly shared with everybody. Scientists often work together and share information before publication. If there were no collaboration, I would not be teaching and providing our spinal cord injury model to half the spinal cord injury laboratories, providing cells and helping laboratories in every way that we can. Spidergirl, it is so unfair for you to say this about our field. Unless you know this for sure, please don't say these things. Can you name a single example of a spinal cord injury scientist not sharing information with others? Sure, there are some cases of companies that don't share information but that is to be expected.

          Originally posted by spidergirl
          Either it works or it doesn't.
          It is not that simple.
          The details of the therapy such as dose, duration, and timing are critical. For example, methylprednisolone does not seem to work so well in rats but it works in cats and humans. The reason is that the time scale in the rat is different from that of a human or cat, perhaps four to ten times faster. In the rat, methylprednisolone is effective only when given within 30 minutes after injury whereas in humans it has beneficial effects as long as 8 hours after injury. If we had done our original experiments in rats, we probably would have dismissed the therapy as being ineffective.
          Some therapies work in some people and not others. That is true of 4-aminopyridine, for example, where it appear to be effective in only about a third of people with spinal cord injury. This is of course because some people are demyelinated and not everybody has the same demyelinated axons. So, the drug has different effects in different people. This makes it very difficult to study in clinical trials and probably the main reason why Acorda Therapeutics failed to show that it was effective in two phase 3 clinical trials. On the other hand, in my opinion, for specific individuals, the treatment seems to work. When people are on the drug, they are stronger and have more sensation. It is important for clinical trials to determine which patients are most likely to respond and which will not.
          A lot of therapies are more effective when combined with others. Let me give you an example. Developing combinations by understanding the mechanism of action of the therapies is essential. For example, in ChinaSCINet, we are addressing the first two components of a triple combination therapy that I believe is essential for large-scale regeneration. The first is to bridge the gap. By the way, this bridge do not need and in fact should not be stem cells but should be well-behaved differentiated cells. We chose umbilical cord blood mononuclear cells for two reasons. First, they are well-tolerated in the spinal cord and the spinal cord does not respond to them by building walls of astrocytes around them. Second, when injected into the cord surrounding the injury site, they migrate and form a continuous bridge across the injury site. Third, they respond to lithium by producing NGF, NT3, and GDNF, trophic factors that have been reported to stimulate regeneration and improve function in rats after spinal cord injury.

          Originally posted by Eric S
          lets say someone takes those animal studies and applies it to humans directly without trials. does that automatically deem the procedure false? the point being the trial is just the data portion of the procedure it doesnt make the procedure work or not. that along with testing for safety which i do feel is important...
          A trial means giving a treatment to humans and documenting the safety and efficacy of the therapy. When somebody applies the therapy to humans, it is trial. However, it can be a bad trial or a good trial. Obviously, if the treatment is given and there is no effort to document what happens, one would not call it a trial. While self-reported improvements or adverse effects by patients is often included as supportive data in a clinical trial, it is not generally considered to be reliable unless there is corroborative data obtained either through neurological examination or test. Let us take two examples:
          • The Beike Biotech group is not adequately documenting the safety and efficacy of their treatment, while they are making claims of 100% safety and 85% response rates, and charging a lot of money. When they first began doing their therapy, I thought that they were collecting the data but, as I find out more about them, it has become apparent that they are not collecting any reasonably acceptable efficacy and safety data and don't seem to have any intent of doing so. In my opinion, this is wrong.
          • The Geeta Shroff group claims to be transplanting human embryonic stem cells but provide no evidence that they have human embryonic stem cells and what they are. They have publicized a few anecodotal cases of treatment effects that they give press releases on but they have not studied any of the patients or provided any convincing data of recovery. Many people have visited them and it is not clear that what they know what they are transplanting, much less any evidence that the cells are human embryonic stem cells.

          It is possible that the Beike group and the Geeta Shroff's of the world may have some kind of miraculous cure. But please look at the situation clearly. These groups are making claims of 100% safety and 85-95% efficacy while providing no data to support their claims. They charge what the market will bear (that seems to be $20,000-$30,000) and seem willing to treat anybody who can pay. They refuse to allow their therapy to be examined by others, to verify that the therapies are what they say they are. They are making little or no effort to document the effects of the therapy on their patients. A legitimate group will not do this.

          Finally, credibility is important. If you don't have credibility that means you will have a very difficult getting other doctors to accept and apply the therapy. It is important to get other doctors to apply the therapy. A person like Hongyun Huang, for example, in his lifetime would be able to operate on only several thousand patients. He may even have several disciples who may each operate on a couple thousand. But, 99% of the people with spinal cord injury in the world now and in the future will not benefit from the therapy. Doctors who have a therapy that they believe is effective have an absolute moral imperative to demonstrate its efficacy in a well-controlled clinical trial to convince other doctors to use it.

          Wise.
          Last edited by Wise Young; 18 Jun 2007, 8:03 AM.

          Comment


            Originally posted by Mike Honcho
            I can't believe what has happened to CareCure in the last few years. It's truly a shame.
            Agreed.

            Comment


              Thank you for the explanation, Dr. Young!

              Comment


                Dr. Young I understand everything that your saying. I don't know the industry as well as you. obviously. But I believe that there are several scientists that do not want to collaborate. And your right several probably do. There is nothing unfair about what I am saying, you can just correct me if I am wrong. I am 1 year and 6 months post so I am not as savvy as others in this field. I just try to read between the lines. I never mentioned your name nor collaboration on your behalf. I asked you before if you were gonna ride and die with this and you said yes and that is why you are teaching the young Chinese new doctors/scientists.

                However, I remember seeing discussions on this site re: scientists not collaborating. Is Total Record collaborating w/ anyone? How bout Miami Project or Geron? Dr. McDonald has told several people that there will be therapies in a few years 7 years ago. That is wrong. Dr. Keirstead I know is collaborating and that is very wise of him because he is young and there are probably many things he doesn't know as well as you. Plus he knows he will get further by doing so. There is always 2 sides of the coin. If a scientist is gonna collaborate with another than there is some what has to be chemistry there first of all and also I say this because I believe that if all the scientists working on SCI in the whole industry were all together in the same lab sharing ideas we would have a cure!!!!! So this is my underlying reason why I say this.

                Technology might be for some of us our only chance Dr. Young. We should not be strung along to believe in something thats not gonna happen for 20 years. Acutes will be cured in 5 to 7. I think robotic assisted devices might be the only chance for paras or a matrix and not speaking of even stem cells. In the CHINASCInet I think you should be testing the most promising of therapies on the planet and collaberating with the best and brightest period. There's no excuse otherwise it's a big waste of time, effort, energy and money. Please.
                Last edited by spidergirl; 18 Jun 2007, 4:48 PM.
                Birds Fly in Flocks, but Eagles Fly Alone...

                Comment


                  dr.huang ........i still pay 300 $ monthly [bank] and the oeg was a big lie.
                  i will finish my payments [bank] 4 more years.........i hope i will be still alive to pay the money.

                  Comment


                    Originally posted by Schmeky
                    Agreed.
                    Most users ever online was 577, 02-06-2007 at 02:49 AM.
                    /index.php

                    Comment


                      Originally posted by spidergirl
                      In the CHINASCInet I think you should be testing the most promising of therapies on the planet and collaberating with the best and brightest period. There's no excuse otherwise it's a big waste of time, effort, energy and money. Please.
                      Spidergirl,

                      They all collaborate behind, its just that were not at the scientific meetings were data is presented. If the case was that they don't collaborate, why do they use each others works and findings?

                      Comment


                        Originally posted by spidergirl
                        In the CHINASCInet I think you should be testing the most promising of therapies on the planet and collaberating with the best and brightest period. There's no excuse otherwise it's a big waste of time, effort, energy and money. Please.
                        Spider, you know that Wise has responded to this comment several times.

                        Three points:

                        He is collaborating with the best and the brightest. Why do you assume that he is not? China has very capable neuroscientists. The Chinese are responsible for many of the scientific breakthroughs in the field.

                        What constitutes the most promising therapies is subjective. Every researcher we have is working in areas he/she feels is most promising Spider. Do you think they should all abandon their current projects to focus on one avenue? Do you think SCI researchers should be focusing on chip implants instead instead of cellular or biochemical cures?

                        Research requires money. ChinaSCINet relies on private donations. They do not have the money to test every therapy in the pipeline of every researcher or pharmaceutical company. They were barely able to raise the money to carry out their current trials. It takes approimately 800 million (maybe half in China) to move one therapy from bench to bedside, are you going to give ChinaSCINet all of the funding they need so they can test only the therapies you deem are best?

                        Please reread this post: /forum/showpost.php?p=538870&postcount=6
                        Last edited by antiquity; 19 Jun 2007, 8:58 AM.

                        Comment


                          Originally posted by spidergirl
                          Please people do not jump down my throat. My question is simple and as many times as Dr. Young has said he believes in therapies ( obviously acute's YES - I believe in acute therapies as well) ) but I don't think I ever read him saying he believes in a cure for "chronic completes" in the next 20 years or whatever. Maybe Antiquity can find a post where this has been said.
                          Wise explained the complexities here Spider. /forum/showpost.php?p=547021&postcount=29

                          Comment


                            I've been following this thread since its inception; I love it, oughta be a book made out of it. Why? Geez, the entire kitchen along with the sink has gotten tossed in! What's not in this thread?

                            (And I've kept my loud mouth out of the whole fray; commendable, eh?)

                            Though we can't claim Hollywood connections and insider knowledge, there's a handful of CC vets who've been labeled 'arrogant' and 'out of control' as SpiderGirl has, yet plunge forward and take the abuse with their eye on the target no matter what befalls them. If SpiderGirl fits this category, if the gal is really who she says she is and is soaking up research and making connections and taking on battles on so many fronts, man, we gotta forgive her for her arrogance and Kevlar-slick exterior and say, 'Girl's got testicles, and we need to support her'.

                            I love confident people, they're inspiring. Sure, she may have a few flaws (large or small), and sure, she brushes aside her inconsistencies and logical bloopers with a wave of her hand, and sure, she dismisses criticism without really addressing it, and sure, she makes declarative, oft definitive statements with a tone of expertise and authority that infuriates the readership, and sure, she thinks she be one fine ass hot bitch, BUT...

                            ... if she's out there working for the greater good, all evangelical for the cause, I say, 'Clone her!'

                            SpiderGirl, any updates on the film?
                            vgrafen

                            My book, 'Scouring the globe for a cure: a disabled man's experiences with stem cell treatment' is available at Booklocker at the following address:

                            www.booklocker.com/books/2857.html

                            A percentage of every sale goes to CareCure.

                            Comment


                              Vgrafen, -if I might chime in, don’t cut the arteries on some that has the boost. Like spider, she might have a bunch of cures or not, but one thing they can’t take away from her, is the willingness to fight this, like you also does – thus you two should be on the same team.

                              Comment


                                Uh, Leif, didn't I just say just that? Is there an echo in here?
                                vgrafen

                                My book, 'Scouring the globe for a cure: a disabled man's experiences with stem cell treatment' is available at Booklocker at the following address:

                                www.booklocker.com/books/2857.html

                                A percentage of every sale goes to CareCure.

                                Comment

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