tag:blogger.com,1999:blog-62716487695149713.post4945461414730144619..comments2023-10-09T02:33:17.014-04:00Comments on ALS ADVOCACY: Let The Data SpeakALSadvocacyhttp://www.blogger.com/profile/15638650524805735994noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-62716487695149713.post-26420412852544385592012-07-26T12:42:49.603-04:002012-07-26T12:42:49.603-04:00"First do no harm," takes on a new meani..."First do no harm," takes on a new meaning when the disease itself is the ultimate harm.ALSadvocacyhttps://www.blogger.com/profile/15638650524805735994noreply@blogger.comtag:blogger.com,1999:blog-62716487695149713.post-5973457675330404462012-07-26T10:48:24.775-04:002012-07-26T10:48:24.775-04:00Great writing. I agree that there is no side effe...Great writing. I agree that there is no side effect that is worse than ALS. The old saying that, "we want to make sure what we are doing is safe for ALS patients," is maddening. I'm smart, I can make choices, I can weigh options. Let me decide. What ever side effect I might experience can't be any worse than being in a wheelchair, living out a dying existence, "trying to make the best of it," while waiting for a treatment. <br /><br />Then there is the added bonus of having ALS for well past the 2 year criteria that most clinical trials require. When a clinical trial takes 5 years to complete, what the heck is in it for PALS who have the good fortune of living longer that the clinical trial criteria? Nothing. PALS might be dead by the time even phase 2 is completed. Is that safer than any side effect? <br /><br />Give me a break, please.Anonymousnoreply@blogger.com