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Thread: Dr Young / ALS cure???

  1. #1

    Dr Young / ALS cure???

    Hi Dr. Young,
    DA or someone mentioned in the Austin thread that one of the presentations referred to a possible cure for ALS but there were no details. Did you hear the presentation? Can you comment on the trials / results / etc.?

    And/or, DA or someone else who attended, could you comment of who/what/where and the details of this for further research?

    I'd like to send some hope to a colleague who is dealing with an ALS challenge, but I don't want to 'blow smoke', you know?

    Thanks.

    BTW - the SCI related information was fantastic to read as well.

  2. #2
    Senior Member DA's Avatar
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    dr young is the guilty party. he basically said, in more detail ofcourse, experiments in rats and confirmed in humans in a double blind trial that they did stopped ALS. he said researchers worldwide have jumped on these results to confirm. if confirmed, then we are talking a first generation cure or at least expand the life span of an ALS patient by decades....

  3. #3

    Dr Young

    I'm assuming this is the study from your handouts: Fornai 2008 Lithium delays progression of ALS? page 24. I don't see anything about a 'cure' though. Did I miss a reference some where?

    Thanks.

  4. #4
    Quote Originally Posted by beachlover View Post
    I'm assuming this is the study from your handouts: Fornai 2008 Lithium delays progression of ALS? page 24. I don't see anything about a 'cure' though. Did I miss a reference some where?

    Thanks.
    I said that if these results are confirmed, this would be close to a cure of ALS. The study suggested that lithium prevented death and significant motor deterioration in patients with ALS. The paper suggested that lithium delayed the disease which is true because the study only looked at the patients for 19 months. This was published in the Proceedings of the National Academy of Science (of the USA) in May 2008.

    Don't take my word for it. Read it yourself and decide.

    Wise.

  5. #5
    I came across this report regarding lithium treatment. Any thoughts??

    http://www.its.caltech.edu/~kfelzer/SixMonthUpdate.pdf

  6. #6
    Senior Member DA's Avatar
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    Quote Originally Posted by abhayk View Post
    I came across this report regarding lithium treatment. Any thoughts??

    http://www.its.caltech.edu/~kfelzer/SixMonthUpdate.pdf
    whoa....not good.

  7. #7
    Quote Originally Posted by abhayk View Post
    I came across this report regarding lithium treatment. Any thoughts??

    http://www.its.caltech.edu/~kfelzer/SixMonthUpdate.pdf
    Abhayk,

    Thanks very much for your post. I attach the Fornai 2008 paper for comparison. The November Felzer & Macedo report had several interesting observations.
    • The number of dropouts was quite substantial. Over a 6 month period, 71 of the 191 subjects (37%) dropped out of the study. Only 60% of the subjects took lithium with riluzole, the treatment that was reported by Fornai to be effective. If 60% of the 120 subjects who did not drop out took both drugs, that would be 72 subjects. Finally, only 50 subjects reported 6 month results.
    • The report indicated that "all patients initially tried to obtain the 0.4 mmol/l blood concentration of lithium advised by Fornai et al. (2008), and patients were monitored by their personal doctors." This statement does not give confidence that all or even many the patients achieved 0.4 mM blood levels or maintained those levels over the 6 month period of the study. By the way, 0.4 mM was the lower limit of the 0.4 to 0.8 serum levels achieved. The effect of lithium on stem cells and depression is dose-dependent.
    • The subjects initially showed a response (i.e. over the first two months). The study period reported was for only 6 months whereas the Fornai study was for 15 months. During that period, it is entirely possible that there was insufficient time for the trends to become significant.
    • The study suggested that the improvement in progression did not depend on lithium levels, whether patients took riluzole, and the stage of the disease, it is doubtful that the study had enough power to be distinguish the effects of all these variables with so few subjects and over only a 6 month period.
    • Seven patients died during the 6 months and 3 went on ventilators. It is not clear whether these were on or not on lithium.


    The Fornai report had concluded that lithium delayed the progression of ALS. I am not sure that lithium-ALS Worldwide Study contradicts the results of the Fornai trial. The Lithium-ALS Worldwide Study was not randomized, blinded, or placebo-controlled. The large numbers of dropouts (71 of 191 subjects dropped out), the poor followup rates (only 50 of 191 subjects actually reported 6 month results), and the lower dose (0.4 instead of 0.4 to 0.8 mM) may have contributed to the apparent lack of response.

    I had spoken to an Italian ALS doctor in Brescia recently. They are doing a study in Italy, a double-blinded and placebo controlled multicenter study of lithium in ALS. Although the study is still blinded, she said that the results are not promising. She also pointed out to significant side-effects. Let's wait to see the results of this study before we conclude that the lithium is not effective for ALS. By the way, several animal studies indicate that lithium is effective for genetic mouse models of ALS. It is entirely possible that the diagnosis of ALS is important that only those with familial forms of ALS would benefit. The only way to answer these questions is to do a rigorous study with less dropout and that is rigorously controlled and with careful monitoring of serum or blood levels of lithium.

    Wise.

  8. #8
    Quote Originally Posted by abhayk View Post
    I came across this report regarding lithium treatment. Any thoughts??

    http://www.its.caltech.edu/~kfelzer/SixMonthUpdate.pdf
    Abhayk,

    Thanks very much for your post. I attach the Fornai 2008 paper for comparison. The November Felzer & Macedo report had several interesting aspects.

    1. The number of dropouts were substantial. Over a 6 month period, 71 of the 191 subjects (37%) dropped out of the study. Only 60% of the subjects took lithium with riluzole, the treatment that was reported by Fornai to be effective. If 60% of the 120 subjects who did not drop out took both drugs, that would be 72 subjects. Only 50 subjects reported 6 month results.

    2. The report indicated that "all patients initially tried to obtain the 0.4 mmol/l blood concentration of lithium advised by Fornai et al. (2008), and patients were monitored by their personal doctors." This statement does not give confidence that all or even many the patients achieved 0.4 mM blood levels or maintained those levels over the 6 month period of the study. By the way, 0.4 mM was the lower limit of the 0.4 to 0.8 serum levels achieved. The effect of lithium on stem cells and depression is dose-dependent.

    3. The subjects initially showed a response (i.e. over the first two months). The study period reported was for only 6 months whereas the Fornai study was for 15 months. During that period, it is entirely possible that there was insufficient time for the trends to become significant.

    4. The study suggested that the improvement in progression did not depend on lithium levels, whether patients took riluzole, and the stage of the disease, it is doubtful that the study had enough power to be distinguish the effects of all these variables with so few subjects and over only a 6 month period.

    5. Seven patients died during the 6 months and 3 went on ventilators. It is not clear whether these were on or not on lithium during the entire 6 month period.

    The Fornai report had concluded that lithium delayed the progression of ALS.
    I am not sure that this lithium-ALS Worldwide Study contradicts the results of the Fornai trial. The Lithium-ALS Worldwide Study was not randomized, blinded, or placebo controlled. The large numbers of dropouts (71 of 191 subjects dropped out), the poor followup rates (only 50 of 191 subjects actually reported 6 month results), and the lower dose (0.4 instead of 0.4 to 0.8 mM) may have contributed to the apparent lack of response.

    I had spoken to an Italian ALS doctor in Brescia recently. They are doing a study in Italy, a double-blinded and placebo controlled multicenter study of lithium in ALS. Although the study is still blinded, she said that the results are not promising. She also pointed out to significant side-effects. Let's wait to see the results of this study before we conclude that the lithium is not effective for ALS. By the way, several animal studies indicate that lithium is effective for genetic mouse models of ALS. It is entirely possible that the diagnosis of ALS is important that only those with familial forms of ALS would benefit. The only way to answer these questions is to do a rigorous study with less dropout and that is rigorously controlled and with careful monitoring of serum or blood levels of lithium.

    Wise.

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