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Thread: 2 Tennessee women don't regret leaving U.S. for stem cell treatment

  1. #11
    Senior Member nbtoppers2's Avatar
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    agreed..what a waste

  2. #12
    Senior Member lunasicc42's Avatar
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    "a penis in the spinal cord? "

    That was funny
    "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!!!! "


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  3. #13
    brucec, I agree with your arguement that if a trial preclued one from other trials, it must be considered. However, if not, then we all must seek our cure. there has been numerous treatments that have been conducted for a fee. No technical and certified analysis of the treatment has been given. This is a warning sign. I feel that when and if Wise, Geron,or another certified treatment, will put these other maggots to rest. Let's hope that we will begin discussing our improvements as a result of obtaining treatment from those we trust.

    keeping on

  4. #14
    Senior Member Tim C.'s Avatar
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    Not hard to understand at all.

    Quote Originally Posted by lunasicc42 View Post
    so theyre not disappointed about spending buku bucks on a Treatment that was a waste? I guess I need help understanding why people always take this position
    At worst it's called Desperation, at best it's Frustration.
    There are all types of SCI. Some of us are not so lucky as others; ie,
    Desperation: quad v. para, hi quad v. low quad, pain v. no pain, complete v. inc., financial resources v. without, readily available caregivging v. unavailable, etc.
    Frustration: those seeking to make a statement to the public's perception that sci'ers are ok living in wheelchairs, those looking to impress upon the US medical field that improvement in sci, albeit ever so minor, is in fact possible, and those who wish to volunteer to be guinea pigs for a medical condition that can't otherwise be cured without the benefit of human volunteers.
    (Mind you, I'm referring to science-based therapies from respected surgeon/scientists, not the snake-oil peddlers)
    Ultimately, not much different than those opting for radical therapies offered as last-chance hope in situations such as stage four cancer, etc. There are many examples of these.
    Do you really think that if, and when a therapy considered by science to offer sci the best odds of recovery is developed that there won't be any risk involved?
    If Geron held a clinical trial for chronics, and opened its enrollment to volunteers, even if some level of cost had to be subsidised by the volunteers that there wouldn't be a line of wheelchairs out the doors?

  5. #15
    Quote Originally Posted by Tim C. View Post
    At worst it's called Desperation, at best it's Frustration.
    There are all types of SCI. Some of us are not so lucky as others; ie,
    Desperation: quad v. para, hi quad v. low quad, pain v. no pain, complete v. inc., financial resources v. without, readily available caregivging v. unavailable, etc.
    Frustration: those seeking to make a statement to the public's perception that sci'ers are ok living in wheelchairs, those looking to impress upon the US medical field that improvement in sci, albeit ever so minor, is in fact possible, and those who wish to volunteer to be guinea pigs for a medical condition that can't otherwise be cured without the benefit of human volunteers.
    (Mind you, I'm referring to science-based therapies from respected surgeon/scientists, not the snake-oil peddlers)
    Ultimately, not much different than those opting for radical therapies offered as last-chance hope in situations such as stage four cancer, etc. There are many examples of these.
    Do you really think that if, and when a therapy considered by science to offer sci the best odds of recovery is developed that there won't be any risk involved?
    If Geron held a clinical trial for chronics, and opened its enrollment to volunteers, even if some level of cost had to be subsidised by the volunteers that there wouldn't be a line of wheelchairs out the doors?
    Very well spoken!!

    IMHO, the current drive and determination from Dr. Wise Young was partially motivated by SCI'ers willing to take risks, spend their money, and travel to foreign countries for a chance at some recovery. All SCI'ers will benefit in the future from those who took risks in chairs, the researchers in the lab, and from those on the operating tables. I give thanks to all of them.

  6. #16
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    Quote Originally Posted by lunasicc42 View Post
    "a penis in the spinal cord? "

    That was funny
    Or a spinal cord in the penis.....

  7. #17
    Quote Originally Posted by ineedmyelin View Post
    YOUR WRONG, we are here following the work of top notch scientist who work under strict rules and regulations designed to protect all from mistakes and errors. dr here have there work checked and rechecked, its called peer review.

    these ladies were "medical tourists". there going places where its ok to implant any type of cell into humans. most of the time no information is gathered on the patient before and after, they just get injected a slap on the ass and and a big thank you for the $30 - $50,000 american dollars. i'm sure they say , "came again" next treatment will be even bigger with even more results.

    you never really know what your bieng injected with. if it is a bunch of cells, what stage of development are they at? are they already programmed to become tissue, bone, blood, a penis. a penis in the spinal cord, i will not go out that way. theres was a dr in tijuana injecting people with shark stem cells, lol, really google it.

    the cns system is soooooooo complicated. u cant just put anything in there. i remember when Jesse Gelsinger died undergoing gene therapy in a trial study at the University of Pennsylvania, that set certain clinical trials back and stopped other trials. turns out the drs didnt follow rules and rushed the experiment into human trial even though other patients had also died because of the experiment.

    comes down to real science vs pseudo science, were following real science. most people here dont just sit on there ass, they advacate, donate, post new findings.
    And what results have all those peer reviews gotten you so far? as far as clinical trials vs experiemental procedures there both batting about even. zilch.... The ugly fact is by time a procedure passes the years and years of clinical review many if not most of us wont recieve them. People tout clincial trials but they dont realize the realities of them, they can take near a decade to complete all the phases, and then they still wont be perfected which will probably take more trials.. In a lot of ways waiting on trials is as "foolish" as medical tourism... And as i said at first, right now there both seem to be producing the same results...

  8. #18
    Quote Originally Posted by Eric.S View Post
    And what results have all those peer reviews gotten you so far? as far as clinical trials vs experiemental procedures there both batting about even. zilch.... The ugly fact is by time a procedure passes the years and years of clinical review many if not most of us wont recieve them. People tout clincial trials but they dont realize the realities of them, they can take near a decade to complete all the phases, and then they still wont be perfected which will probably take more trials.. In a lot of ways waiting on trials is as "foolish" as medical tourism... And as i said at first, right now there both seem to be producing the same results...
    lol.............all i can do. your right. your absolutely right. thank you so much for opening my eyes and mind.

    I GIVE UP............U WIN



    PEACE

  9. #19
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    Thanks to all for an interesting discussion.

    I am personally partial to the non-interference ethic that dominated the USA until the 70s, after which came seat-belt laws, and finally laws requiring teachers and some other public servants to accuse (report) people whom the SUSPECT may be abusing someone. Requiring citizens to report rumors, or what so-and-so said that could be a crime against "the people"... that is totalitarian and one reason we fought the cold war.

    Stepping down off the soap box, I think there is merit in letting others risk making their own mistakes. Consider Beike Biotech. they are a large operation that has hired some fine researchers away from some of our top universities. No one knows the quality of their record keeping of patients beyond it being "thin". We just don't know. I can predict that once research has clarified which types of cells will benefit what patients, Beike may become a leader in producing those cells for medical use. They will have the necessary protocols in place for producing lots of cells when no one else has the experience.

    When I hear someone denounce all for-profit stem cell treatment I know that person has not read in depth about that business.

  10. #20
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    Quote Originally Posted by Tetracyclone View Post
    Thanks to all for an interesting discussion.

    I am personally partial to the non-interference ethic that dominated the USA until the 70s, after which came seat-belt laws, and finally laws requiring teachers and some other public servants to accuse (report) people whom the SUSPECT may be abusing someone. Requiring citizens to report rumors, or what so-and-so said that could be a crime against "the people"... that is totalitarian and one reason we fought the cold war.

    Stepping down off the soap box, I think there is merit in letting others risk making their own mistakes. Consider Beike Biotech. they are a large operation that has hired some fine researchers away from some of our top universities. No one knows the quality of their record keeping of patients beyond it being "thin". We just don't know. I can predict that once research has clarified which types of cells will benefit what patients, Beike may become a leader in producing those cells for medical use. They will have the necessary protocols in place for producing lots of cells when no one else has the experience.

    When I hear someone denounce all for-profit stem cell treatment I know that person has not read in depth about that business.
    I have to disagree with you about thinking the days of non-interference being better. Those were the days of sloppy research and drugs making it to market before all the possible dangers were known. Thalidomide babies are the best example of the horrors of such rush to market new treatments. Countless children lived in both terror and neglect before teachers and other custodial figures were mandated to report suspected abuse too. The problem with careless cures is that there is not only danger to the person willing to undergo them out of some sort of desperation, it is a danger to those who then want to jump aboard the medical tourism ship specifically because the person who has invested all his/her money to travel to X country for a "cure" starts writing blogs or posts about some of the benefits they feel they might have obtained, often within the two year window when return would have occurred with or without bogus cures. It is human nature to want to believe that your financial and physical investment had some benefit, and some of these posts then convince others that they should seek a similar dangerous or useless route to a supposed cure.

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