5 ms·

This is great news! But despite the apparent striking effects, doctors have cautioned against great expectations for the drug at this stage as there was no con

• cpncrunch 11y ago
  >Heh, of course. But right now it could be used as an off-label treatment? Why bother? There's still fuck all evidence that it works. (Bear in mind the placebo effect is a large factor in all Parkinson's trials). This is yet another example of overhyped crap science being posted on HN.
  • msie 11y ago
    For the desperate, why not? Of course weigh the side-effects against the benefits. First try placebo, if it doesn't work then try the real thing.
    • cpncrunch 11y ago
      Because there's an almost infinite supply of unproven quacky treatments for every illness. I could sell you one if you really want.
      • msie 11y ago
        I wouldn't say this is in the same league as the many other unproven quacky treatments. For people in the late-stage what do they do in the mean time if nothing else works? They mention striking improvements. I wonder what they mean by that. From not talking to talking is pretty impressive. I understand one shouldn't be leaping at every faint glimmer of hope though. It will be emotionally draining.
        • cpncrunch 11y ago
          Every single quacky treatment has "striking improvements", and so do pretty much all open-label trials which later turn out to be useless. I've been looking into this for a long time (for other illnesses). I would recommend instead of using unproven treatments, go with the proven treatments and also look into the placebo effect itself and how it works and then replicate that effect without spending money on dubious treatments. EDIT google "liberation therapy" for a good example.
          • msie 11y ago
            Sure. Sadly, I just looked up nilotinib and it's very expensive. I just assumed it was cheaper. :-( I have followed "liberation therapy" and was really disappointed. Since it's a surgical procedure I'd just be more skeptical of trying it out vs taking a pill.
      • manarth 11y ago
        So balance it out. Potential benefit? Improved health/physical condition. Potential cost? 1. Financial cost of treatment. 2. Side-effects of treatment. Number 1 is an important question: if it's a few dollars a month, it's on a par with a placebo. If it's a hundred dollars a month, I would hope it behaves better than a placebo (although a saline injection has a larger placebo effect than a sugar pill, and a $40 bottle of wine tastes better than a $10 bottle of wine, so there's a potential placebo multiplier just in the pricing). If it's tens of thousands of dollars a month, I'd expect some pretty dramatic results. So pricing is a factor, and I haven't seen that mentioned. The second issue is side-effects, but this is a drug that's already passed clinical trials, so hopefully these are known and recognised. It'd be great to see this experiment rolled out to double-blind placebo-controlled clinical trials, but until that happens, I'd still be willing to give it a try.
        • msie 11y ago
          Thanks, that's what I was trying to get at. You expressed it better.
        • cpncrunch 11y ago
          >It'd be great to see this experiment rolled out to double-blind placebo-controlled clinical trials, but until that happens, I'd still be willing to give it a try. Google "liberation therapy" for an example. This bad science really is damaging, as it costs everyone a lot of money, hooks in vulnerable patients, and doesn't provide any benefit over the placebo effect. The placebo effect can be strong, certainly, but if you're relying on that you are much better investigating the psychological factors that underpins it, rather than hoodwinking patients (whether deliberately or due to ignorance).