Thread: ChinaSCINet Update

  1. #1431
    Quote Originally Posted by Marcus View Post
    This is the proof that JS, Paolo and the other were playing here together all the time. Shame on you.
    Marcus,

    you are free to think that, but you are wrong.

    I am just a person with SCI that has been following SCI research with diligence for 8 years now including attending SCI scientific meetings etc., That just with the intention to be a person with SCI as informed as possible so that I can possibly provide useful inputs for a faster progress toward a cure.
    Questionable things must be questioned if we want a faster progress toward a cure.
    Just read the story of the AIDS movments as an example:

    http://www.fastercures.org/documents...asicsFinal.pdf

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

  2. #1432
    Quote Originally Posted by Wise Young View Post

    .... The subjects are walking every day. They all need incentives.

    ...We must be careful not to raise expectations too high.
    ....-
    I see a contradiction here, but maybe it's just me.

    Perhaps it would be better to say "try to walk every day" rather than "are walking every day.

    Just my personal opinion.

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

  3. #1433
    Quote Originally Posted by paolocipolla View Post
    I see a contradiction here, but maybe it's just me.

    Perhaps it would be better to say "try to walk every day" rather than "are walking every day.

    Just my personal opinion.

    Paolo
    For the love of God. Is there anyone else here confused by what Wise means by "walking"? Has he not explained the 6-6-6 regimen of the trial enough times for anyone else? Anyone?

    Psst: It's just you.

  4. #1434
    I moved posts to Members that I thought were off-track, while leaving what I thought was important. If you think I removed to much, PM me.

  5. #1435
    Quote Originally Posted by Geoman View Post
    I think the issue here is that Wise is trying to help us out by keeping us informed of the trial's progress, not for the purpose of soliciting funding as some suggest, but because he understands the position we're in, how it helps us get by each day knowing that we're a step (or push) closer. But some on this site, who are not from the medical profession (and obviously don't understand the protocols and procedures of scientific reporting), feel that it's their role to peer reveiw his work and question his integrity for the sake of self gratification, rather than ask geniune questions to improve our understanding, and this does nothing but waste his time (and our's as we have to plough through all of the rubbish lately to find the real info). I totaly understand where Wise is coming from regarding this. As a sceintist I would do the same if I was in a similar position with my work.

    Clayton
    While I acknowledge the need for robust scientific debate, particularly where new ground is being broken, why is it that we see so much negativity towards Wise's work from some here? Perhaps this is how it's done in the medical profession and we just happen to be able to witness it here on a public forum. I've been an environmental geochemistry consultant for over 25 years and while much of my work requires peer review, it has never been in such a negative manner as witnessed on this site. I'm not saying this to defend Wise, I know he's more than capable of looking after himself on that front, I would just like to get rid of all the rubbish so that we can get back to the central role of this forum, to educate and empower us with knowledge. We're all in this together to fix this thing, sure ask questions if you don't understand (but not over and over again because you don't hear what you want to hear, or you couldn't be bothered doing you're own research) and let someone know if and why you disagree with what they're saying, but there is no need for negativity toward someone for presenting something that you don't agree with.

    Just to clarify my earlier post. Many people on this site have been asking Wise for an update on the progress and preliminary findings from ChinaSCINet, and Wise has accomodated these requests, where possible, with the required provisos. It is my understanding that he has provided us with the preliminary data with the intent of keeping us informed of progress for our benefit, not for critical review or for our approval (or funding). The time for critical peer review will happen once all of the results are in and reported, and this will be done by adequately trained people, not us. I appreciate that Wise has provided the preliminary data in the past and while I'm dissappointed that he may have to discontinue this in the future, I understand his reasoning. I also understand that this is a bit of a gray area because it may be beneficial to the cause to get feedback from likes of Jerry Silver and it is also very interesting for us to watch how it's played out, hence Wise's indecision regarding this. But the crux of the matter is that because some people on this site are latching on to the preliminary data and trying to analyse it prematurely without the required medical or sceintific expertise, after many warnings from people who saw it coming, it is no longer in the best interest of the trial for Wise to release any of the data until it has been all been collected, reveiwed and reported, as required, and unfournately this means that we will need to wait a lot longer for any results (Wise, please correct me if I'm wrong). If only those responsible could take heed!

    Clayton
    "Wheelie Wanna Walk!"

  6. #1436
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    I request my all CC friends not to be personal and negative here on CC. I know we being SCI patients have lot of hopes but it does not mean that we become so much negative on others. Let us pray and watch progress from Wise and Jerry and few others.

  7. #1437
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    Jerry can you just tell that how far ch'ase and ur peptide away from human trials now?

  8. #1438
    In my opinion, there are two challenges in getting other people to care about funding spinal cord injury therapies:

    1. The perception that once injured, a person doesn't get worse. Contrast with ALS, MS, Parkinson's, Alzheimer's, etc. After stabilization, SCI is not considered by most to be imminently lethal.

    2. Conventional wisdom says that spinal cord injury will just simply never be fixed. In cancer cases, patients receive bone marrow transplants, surgery, radiation, etc. and survive. HIV/AIDS patients receive drug cocktails that lengthen life and sometimes make the virus undetectable in the body. Pancreatic cancer people have hope because some breast cancer people get better. A major breakthrough for ANY neurological disease (i.e.: if a brain injury person got stem cells, began to make limited eye contact 9 months later) would help change the spinal cord injury conversation.

    I'm probably ignorant on this, but in terms of moving therapies forward, what is the importance of published studies if they aren't necessary to apply for and receive FDA approval for the Phase III clinical trials? Is purported data/outcomes categorically dismissed by researchers if not yet published in a journal? Would any researchers support the trial's findings despite not being published in a journal?

    What happens if you put the info out there and an official study confirming the data was published later? Truth is confirmed either way.

    It feels a little like a reliable scout who sees an invading army and doesn't tell his fellow soldiers about it until first receiving the necessary permission from his commander to do so. Time that could've been used preparing a defense is wasted because of inefficient bureaucracy.
    Last edited by crabbyshark; 12-22-2012 at 03:15 AM.

  9. #1439
    Quote Originally Posted by paolocipolla View Post
    I see a contradiction here, but maybe it's just me.

    Perhaps it would be better to say "try to walk every day" rather than "are walking every day.

    Just my personal opinion.

    Paolo
    Paolo,
    I know you have good intentions, but getting bogged down with this is just semantics and not helpful in any way, and in fact may be detrimental due to the fact that Wise is now considering whether or not he will be providing us with any of the preliminary findings of the trial/s. It really just comes across that you're just feeding your own ego rather than genuinely trying to help the cause. If it's your "personal opinion" and it doesn't help our understanding, in future it's probably best to keep it that way..."personal" that is.

    Clayton
    "Wheelie Wanna Walk!"

  10. #1440
    Senior Member
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    I wish that someone really could explain to Paolo that these therapies are not for him. I wish that for example Wise Young and Jerry Silver could explain to Paolo that due to the complexity of injuries like the one Paolo has where big areas and networks of the spinal cord is damaged including lower motoneurons, systems connected to the CPG and other generators including large areas of segmental interneurons and ascending and descending axon pathways, - that it will be impossible to threat Paolo’s injury. As of today there are just some scattered proof in animal models that some axon sprouting can occur for any research in the SCI field, and to take it from there to humans is a huge step, let alone to cure injuries like the one Paolo has. It will be impossible in his lifetime. And like it is now I feel that scientists are fooling Paolo and giving him false hope. Someone should be realistic and explain all this in a good way to Paolo. It’s fine that Paolo is working for cures for others, but one should not fool Paolo letting him believing that there will be therapies for him in the near future.

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