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    2004 vs 2005

    2004 was supposed to be "the year".

    Will 2005 be "it"?

    #2
    Yes I believe 2005 will be the year we get a complete chronic injury significant motor & sensory recovery in a human trial. IMHO 2005 will be a major breakthrough year.
    "Oh yeah life goes on
    Long after the thrill of livin is gone"

    John Cougar Mellencamp

    Comment


      #3
      I want to first introduce myself by saying that a couple of my best friends are injured. I've been coming to this forum for almost a year now and I want to congratulate everyone on what an incredible source of information and inspiration you all are.

      I am in awe at how quickly, almost instantinous, up-to-the-minute research results are posted. When I first started coming to the site, I found myself wanting to log-in three, four, five times a day and I was caught up in the excitment of the research that is taking place around the world.

      After a few months, I started to get a little disalluioned and angry at why the research is taking so long. "With all these new announcements why can't they begin human trials, I thought." And then I found myself starting to get more and more angry but still coming to this forum non-stop.

      After a while and after almost 50 hours of talking to scientists, I better understood the process and why it takes so much time. I found that I had to literally begin to wean myself off the amount of time I spent here. It wasn't good for my emotional well-being. I realized that I had to also continue to live my life and balance that with my desire to stay informed about the latest research results and to constantly remind myself at the truth of how quickly the science is really moving forward.

      My intent in this email is not to attack anyone. And I also acknowledge that I can never fully comprehend what life must be like to be paralyzed. I can empathis as I am HIV+ what life is like with a terminal condition.

      With that said, my question is to those who are injured and who spend a large amount of your time here - are you getting so caught up by the amount of new information that is being presented here everyday that you get depressed by the perceived lack of progress being made when in truth it is astonishing?

      Is there a need to find a balance of living life to the best of one's abilitiy (there are so many examples of those who are injured doing so) and of staying informed?

      Just curious about your thoughts. And I apologize in advance if this message offends anyone as that is not my intent.

      Comment


        #4
        Glad to see you posting LetsGo. I have been injured since 1981 and every year I have said to myself maybe this will be the year. At the same time I have gone on with my life and tried to live it the best I can with the way that I am. So sorry to hear that you have HIV, there are many good drugs these days for this kind of thing and just because you are HIV positive does not necessarily mean a death sentance, there are many people living long productive lives with HIV. I think it is mainly about attitude and trying to overcome obsticals and not letting it pull you down. It is all about how you percieve yourself and the future and keeping a good outlook.
        "Life is about how you
        respond to not only the
        challenges you're dealt but
        the challenges you seek...If
        you have no goals, no
        mountains to climb, your
        soul dies".~Liz Fordred

        Comment


          #5
          Thanks Curt - glad to hear the feedback and thanks for your concern about my health. I just want everyone to know that I don't want this to be "about me or my HIV" but about the balance between living and information.

          BTW - my infection has given me so many blessings that I can't even begin to count them. Most important of all the knowledge that I will die. Through this, I have found my will to live everyday and am reminded at how beautiful things can be when we all work together for the common good.

          Comment


            #6
            2003 was the big science year.
            2004 was the paper work for trials year.
            2005 will be trials year.

            Comment


              #7
              I think that 2006 will actually be the year that we see the start of significant trials. I'm probably influenced quite a bit by the proposed timeline of the China trials network plan.

              LetsGo, you bring up a very valid point in my opinion. I find myself getting somewhat depressed if I spend too much time here reading through the posts. I do think that science will eventually catch up with us though. In the meantime, I remind myself that I need to keep myself healthy and work to make others in my community aware of the importance of SCI research. I also keep myself busy with work and personal interests.

              LetsGo, good luck in your fight.

              Ronnie

              Comment


                #8
                LetsGo,

                Your perspective and view of SCI research is important. Thank for joining this forum. I agree with your comments.

                rapid524,

                I feel mid-2006-2007 will be the beginning of human trials that may prove significant. There will be no better clinical trials than the China Network in the foreseeable future. I hope the China trials don't get unduly delayed as has practically all other proposed clinical trials.

                There will be other trials and I hope they too prove significant, but they will be small and limited to only a few people for several years.

                Comment


                  #9
                  I predicted that 2005 would be the 'it' year back in 2000. I'm not so sure now, due primarily because the entire CRPA bill has yet to pass. SCI doesn't get much monetary support from the NIH and that doesn't bode well for rapid advances.

                  Comment


                    #10
                    The science is here the funding is not.

                    The timeline, imo, should concern applicable, consistent, readily available human clinical trials.

                    So far I haven't seen established nor been recruited/considered for any 2005 trials - anywhere. Have any of you?

                    Athough hopefully optimistic I don't see 2005 as a breakthrough year for the simple reason of woefully underfunded efforts.

                    Comment


                      #11
                      I would hate to think that some countries
                      are waiting to see what comes out of China and Portugal instead of blazing their own trail.

                      Do you think seven years for China to have
                      a solid, verified combo for chronics yielding 5-8 motor levels of return is more realistic? Maybe the USA in 15?

                      J.
                      And the truth shall set you free.

                      Comment


                        #12
                        If trials come to fruition by 2006, where does this leave us? Another decade or two until we get a chance at a better life? We've hit the 5 year mark since 2000, and if you ask any scientist who believes in this research, he or she will say in 2005, " hopefully in 5 years". Now I am beginning to see and feel what it is like to be a long term SCI survivor, and I all too clearly see the snail's pace of research, and am beginning to think that if it ever comes, a cure will not be applicable to me. That's tragic after all the promise I was filled with in 2000, and in this country under it's strict guidelines, no treatment will be brought to the masses until it is disected and agreed upon by a medical board, which, in the end, is just too fuckin' far down the road! I am going to spend my thirties and forties in a wheelchair unless I get the balls to check out. Treating chronic Lumbosacral SCI isn't even on any radar on this planet, and frankly, treatments ( as they should be ), will be aimed to fixing Cervical injuries. These 5 years have been a BIG letdown, making most of us more chronic by the minute. Not to undermine your daily struggles, Letsgo, but I'd take a positive HIV diagnosis over my current condition any day. For those fortunate enough who can afford retroviral cocktails, AIDS research has permitted a gargantuan leap in quality of life. It took a total of 15 years, from first strains of HIV in 1981, to 1996, when drug cocktails became available. Where were the exhaustive years of clinical trials for these drugs? Has SCI been soo hopeless of a field that there are still researchers and doctors who feel a cure is infintely impossible, let alone retrieval of bowel, bladder, and sexuality?

                        sherman brayton
                        sherman brayton

                        Comment


                          #13
                          The reason for my post was not to change Schmeky original discuss but to add something to it. My point is when everyone is placing all their hopes if 2004 was the year or 2005 or 2006, doesn't end up making you feel helpless? Instead of placing your hopes on one year to the next, why not make sure you are doing everything possible to pressure the scientists, continue to organize and demand that Washington politicians hear and see you, raising the money to care and cure research and raising the public's awareness of this issue.

                          It's mindboggling to me to look at the big picture and see how far you have come in 20-25 years of serious research. Cancer can't say they accomplished as much in that short of time or diabetes or parkinsons etc.

                          The gay community raised the money initially for AIDs research, the marched on Washington, protested the state capitals and forced the media to pay attention. The SCI community needs to do the same.

                          Comment


                            #14
                            Seneca,

                            I'm concerned that we may be discussing the same situation in 2010. We all hope not.

                            Obed,

                            I respectfully disagree. The science is close for acutes, practically there, but for chronics, there is still fundamental disagreement on the Glial scar as a regeneration barrier. No one has demonstrated an effective chronic therapy to date.

                            LetsGo,

                            You're right on advocating and pushing the political system. The SCI community is not as united as it could be, I have tried on a local/regional level to spark advocacy with virtually no success.

                            AIDS funding was given a huge boost by hollywood moguls whose colleages were stricken with the diesease. Elizabeth Taylor virtually demanded one of our former presidents acknowledge the AIDS epidemic and divert funds to research. In addition, she raised hundreds of millions through advocacy for many years.

                            Reeve is gone, we no longer have a visible champion. America forgets quickly.

                            Comment


                              #15
                              Schmeky,

                              Check Steven Strittmater's work as well as Marie Filbin's, Lisa Mckeracher(sp), Os Steward, Mark Tuczinsky(sp) and a few others like Mary Bunge, Barth Green.

                              Granted that sci cure is "easier" in acutes however that does not mean that the research is less promising. Axon regeneration/targeting, neuron replacement is what it is regardless of time injured (chronic/acute). The challenge is to consistently experiment with science that is available. That's not happening, again, regardless of time injured.

                              If you want to break it down to clinical trials/experiments acutes and chronics then essentially I see:

                              1. Macrophage (Proneuron) - true acutes
                              2. Beijing - chronics (including ALS)
                              3. Portugal - chronics
                              4. Russia - chronics

                              Any injury beyond 6-8 weeks is considered chronic.

                              Believe me I'm not trying to convince you. I can only suggest that you attend a cutting edge neuroscience meeting, watch, read, and listen to the presentations and I'll bet you come away increasingly frustrated. Not because of the lack of effort and progress - which is astonishing - but the lack of urgency and ultimate clinical application (talk about frustration).

                              The abyss between bench and bedside is huge. This is the gap that must be bridged (especially in the U.S.) in order for us to achieve recovery. Political persuasion and adequate funding would shorten the gap and ultimately the time frame. This is where our efforts - day to day - should be focused (none here are researchers so why try and pretend that we are instead of working to support those actually in the lab?). Understanding the science is all well and good but what does it matter if you're not experimenting with it? I liken it to having a really nice technically efficient car in your garage but no gas (nor enough money to buy any) to drive it. There it sits like so much of the current sci research/science.

                              The lack of consistent sci related clinical trials - given the science available - is unconsionable.

                              Technically, on this site, the legislative and funding forum should be the biggest and most popular. Why? The reason is simple - its where each one of us can make the greatest impact to help each other/community.

                              [This message was edited by Obed on 12-31-04 at 10:46 PM.]

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