5 ms·

This seems wrong because anecdotally there are people who become full-time care-takers of their Alzheimer afflicted family members and have no luck in change. I

This seems wrong because anecdotally there are people who become full-time care-takers of their Alzheimer afflicted family members and have no luck in change. If wearing a funny hate is all that's needed, sign me up.

harry8 7y ago
Do they believe they are also getting a new treatment that is going to work (we all want to believe, cute snake oil sales) or are they just depressed about their decline, but in company? Placebos ain't placebos.
- jrochkind1 7y ago
  There are studies that seem to show placebos 'working' even when you _tell_ people they are placebos. Placebos are weird. But yeah, there could totally be a difference between twice-a-day intervention by a researcher who is in a good mood and optimistic about your recovery (and well-rested from going home every night from their prestigious and well-paid job), and a live-in relative who is exhausted and depressed from your state and from having had to leave much of their life to become a full-time live-in caretaker. Depressed about decline with company, indeed.
  - Filligree 7y ago
    No need for the scare quotes. Placebos work; they're statistically significantly above "no action taken". One can argue about why that is, but it seems obvious that there's something exploitable there.
    - dTal 7y ago
      Genuine question, do placebos "work" for any non-subjective effect? Obviously if I give you a placebo painkiller you might venture "I guess it hurts a little less", but if I give you placebo blood pressure medication does your blood pressure actually go down, even a little? Do placebo antibiotics fight infection? If not, it sounds like a reporting issue and not any kind of exploitable effect distinct from convincing someone to cheer up a bit.
      - Filligree 7y ago
        Yes, and yes. Can't give you references right now, though.
      - tacon 7y ago
        This rabbit hole of placebos goes very deep. They very much do work, and they work way too well, too often. For example, [0] might really surprise you. And just to really complicate our model of placebos, you should realize there are the opposite of placebos, called nocebos[1]. [0] https://www.wnycstudios.org/podcasts/onlyhuman/episodes/real-doctors-fake-medicine-placebos https://www.wnycstudios.org/podcasts/onlyhuman/episodes/real... [1] https://en.wikipedia.org/wiki/Nocebo https://en.wikipedia.org/wiki/Nocebo [2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099043/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099043/
        copperx 7y ago
        However, there are fields where placebos don't work. For example, in oncology.
  - harry8 7y ago
    This does not make /all/ placebos equal and obviously so. Also, please understand if you haven't been anywhere near there yourself, the ONLY thing you can be 100% sure of when being used for scientific trials is that they are lying to you. Says so right there on the tin. Anything else would be unethical, right? Bad science! "Take this, this is a placebo" But is it? Or is this a sciency adjustment to show that it's the medicine working on me not any belief I have in it. Is there another reason they can't tell me why they're lying about it being a placebo? What are you trying to treat. A 1000 ft vertical fall? Whether you know it's a placebo or not makes zero difference. Described feelings of wellness? Yeah. There's a huge amount between those extremes. All those things are not equal, nor is it even approximately continuous between them. Don't laugh when people disbelieve "this is placebo". Have some respect for the people who are in these trials because you know the scientists and doctors they're forced to deal with for their one shot at treatment have basically have none at all that is remotely visible to the poor fool staring down some hideous, heinous, vicious, rapacious monster. Don't believe me, got to hospital, try it. The drowning person will clutch the point of a sword but that's not something you'll see in scientific litterature built on data from these people with human hopes, dreams and utter desperation. "Take a teaspoon of sugar, get it yourself from the hospital canteen then open the sachet and consume in front of a nurse at 15:00 daily just so you can be 100% sure it's not medicine and is a placebo" - no placebo verifying trial ever. Or maybe I stopped reading too early and the experimental design wasn't as flawed as it looks. Maybe you can confirm with a link to the paper because your expertise outstrips my own? Here's something that is not a placebo: "Promising treatment found for $disease_monster affect millions directly and indirectly" as a story worth money to tell whether fact or fiction. It got viewers on tv before the web, sold magazines and papers and now gets clicks and advertising impressions. It's difficult to be cynnical enough, isn't it? Cancer, Alzheimers are very high on the qty of cure stories that go nowhere we see. Because you know people, you probably loved some of them or love people who did. It catches your eye. Interestingly, while I'm on this ramble, medicine is where the rubber meets the road in most people's life, even highly educated people, when it comes to science. What they see are not the ideals science has for itself. This in turn undermines belief in science because there really is /so/ much scientific bullshit to wade through. YES it's better than crystals and chakras or other crap and that's an insanely low bar. If that's the best we have we are an utter disgrace as a civilization. This is not an anti-science comment. Science really could be being practised a hell of a lot better in and around medicine, including its reporting. If you love science and what it has done for the human race (who doesn't), stare at the ugliness on display. Decide if you're ok with it or not. Here is a picture of a random person identified as a scientist who has a teaching position at a university. Do you trust them absolutely without question or are you rather more circumspect. I'll finish with the words funding and replication crisis. If you have been, I apologise...
- Bartweiss 7y ago
  I mean, people have tried several promising new Alzheimer's medications which failed, along with a host of snake oil nonsense. I'd have to go and dig up studies, but my memory is that even the control groups don't see particularly good results; neurodegenerative disorders are just too fundamental. Most of the promising results for brain activity and dementia seem to represent either keeping information "active" so that it's not consolidated away by normal aging, or keeping patients engaged so that they have better cognitive performance despite unchecked biological losses. I agree that if this only saw improvement on cognitive scores, a placebo delaying decline would be pretty concerning. But the biological improvements are better than drug or placebo for any other Alzheimer's medicine I've seen, which is very promising.

harry8 7y ago

Do they believe they are also getting a new treatment that is going to work (we all want to believe, cute snake oil sales) or are they just depressed about their decline, but in company? Placebos ain't placebos.

jrochkind1 7y ago
There are studies that seem to show placebos 'working' even when you _tell_ people they are placebos. Placebos are weird. But yeah, there could totally be a difference between twice-a-day intervention by a researcher who is in a good mood and optimistic about your recovery (and well-rested from going home every night from their prestigious and well-paid job), and a live-in relative who is exhausted and depressed from your state and from having had to leave much of their life to become a full-time live-in caretaker. Depressed about decline with company, indeed.
- Filligree 7y ago
  No need for the scare quotes. Placebos work; they're statistically significantly above "no action taken". One can argue about why that is, but it seems obvious that there's something exploitable there.
  - dTal 7y ago
    Genuine question, do placebos "work" for any non-subjective effect? Obviously if I give you a placebo painkiller you might venture "I guess it hurts a little less", but if I give you placebo blood pressure medication does your blood pressure actually go down, even a little? Do placebo antibiotics fight infection? If not, it sounds like a reporting issue and not any kind of exploitable effect distinct from convincing someone to cheer up a bit.
    - Filligree 7y ago
      Yes, and yes. Can't give you references right now, though.
    - tacon 7y ago
      This rabbit hole of placebos goes very deep. They very much do work, and they work way too well, too often. For example, [0] might really surprise you. And just to really complicate our model of placebos, you should realize there are the opposite of placebos, called nocebos[1]. [0] https://www.wnycstudios.org/podcasts/onlyhuman/episodes/real-doctors-fake-medicine-placebos https://www.wnycstudios.org/podcasts/onlyhuman/episodes/real... [1] https://en.wikipedia.org/wiki/Nocebo https://en.wikipedia.org/wiki/Nocebo [2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099043/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099043/
      - copperx 7y ago
        However, there are fields where placebos don't work. For example, in oncology.
- harry8 7y ago
  This does not make /all/ placebos equal and obviously so. Also, please understand if you haven't been anywhere near there yourself, the ONLY thing you can be 100% sure of when being used for scientific trials is that they are lying to you. Says so right there on the tin. Anything else would be unethical, right? Bad science! "Take this, this is a placebo" But is it? Or is this a sciency adjustment to show that it's the medicine working on me not any belief I have in it. Is there another reason they can't tell me why they're lying about it being a placebo? What are you trying to treat. A 1000 ft vertical fall? Whether you know it's a placebo or not makes zero difference. Described feelings of wellness? Yeah. There's a huge amount between those extremes. All those things are not equal, nor is it even approximately continuous between them. Don't laugh when people disbelieve "this is placebo". Have some respect for the people who are in these trials because you know the scientists and doctors they're forced to deal with for their one shot at treatment have basically have none at all that is remotely visible to the poor fool staring down some hideous, heinous, vicious, rapacious monster. Don't believe me, got to hospital, try it. The drowning person will clutch the point of a sword but that's not something you'll see in scientific litterature built on data from these people with human hopes, dreams and utter desperation. "Take a teaspoon of sugar, get it yourself from the hospital canteen then open the sachet and consume in front of a nurse at 15:00 daily just so you can be 100% sure it's not medicine and is a placebo" - no placebo verifying trial ever. Or maybe I stopped reading too early and the experimental design wasn't as flawed as it looks. Maybe you can confirm with a link to the paper because your expertise outstrips my own? Here's something that is not a placebo: "Promising treatment found for $disease_monster affect millions directly and indirectly" as a story worth money to tell whether fact or fiction. It got viewers on tv before the web, sold magazines and papers and now gets clicks and advertising impressions. It's difficult to be cynnical enough, isn't it? Cancer, Alzheimers are very high on the qty of cure stories that go nowhere we see. Because you know people, you probably loved some of them or love people who did. It catches your eye. Interestingly, while I'm on this ramble, medicine is where the rubber meets the road in most people's life, even highly educated people, when it comes to science. What they see are not the ideals science has for itself. This in turn undermines belief in science because there really is /so/ much scientific bullshit to wade through. YES it's better than crystals and chakras or other crap and that's an insanely low bar. If that's the best we have we are an utter disgrace as a civilization. This is not an anti-science comment. Science really could be being practised a hell of a lot better in and around medicine, including its reporting. If you love science and what it has done for the human race (who doesn't), stare at the ugliness on display. Decide if you're ok with it or not. Here is a picture of a random person identified as a scientist who has a teaching position at a university. Do you trust them absolutely without question or are you rather more circumspect. I'll finish with the words funding and replication crisis. If you have been, I apologise...
Bartweiss 7y ago
I mean, people have tried several promising new Alzheimer's medications which failed, along with a host of snake oil nonsense. I'd have to go and dig up studies, but my memory is that even the control groups don't see particularly good results; neurodegenerative disorders are just too fundamental. Most of the promising results for brain activity and dementia seem to represent either keeping information "active" so that it's not consolidated away by normal aging, or keeping patients engaged so that they have better cognitive performance despite unchecked biological losses. I agree that if this only saw improvement on cognitive scores, a placebo delaying decline would be pretty concerning. But the biological improvements are better than drug or placebo for any other Alzheimer's medicine I've seen, which is very promising.