6 ms·

I know when someone’s faced with certain death they’ll do almost anything they can to survive if only for a little bit longer, but this thread full of personal

by ausbah 2y ago

I know when someone’s faced with certain death they’ll do almost anything they can to survive if only for a little bit longer, but this thread full of personal antectodes and largely non-reproduced effects from random pubmed articles is the hackernews equivalent of essential oils or smth

7e 2y ago
It's false hope, swallowed hook line and sinker.
- d--b 2y ago
  Sure this is the right place for a good word
- mllev 2y ago
  Person with cancer: I hope this new treatment works for me You: FALSE!
lambdaphagy 2y ago
My impression formed from my time in cancer drug discovery is that bro science is, within practical bounds, a perfectly reasonable option for one arm of a comprehensive plan for treatment. A lot of things that sound like bro science are actually broadly supported in the literature. But studying this stuff is hard because of all of the usual issues with human subjects, the less than complete reliability of our epistemic institutions, and the infeasibility of running enough trials to address every indication in every subcohort. So if anecdata supports some intervention that that isn't aggressively inconsistent with basic theory, won't make you miserable for what might be the rest of your life, and which you could try with the sober understanding that your One Weird Trick might not work, why not? If nothing else, a well-documented case study with good adherence tells us of one more thing that didn't work, which is hardly the worst parting gift to the world.
- lambdaphagy 2y ago
  To give a practical example, grapefruit juice contains some compounds that inhibit CYP3A4, a metabolic enzyme that influences the metabolism and absorption of many drugs, which is why many prescriptions tell you not to drink it while taking a given medication. This interaction was not discovered until 1989, and not reported until two years after that. So before 1991, a simple dietary intervention that affected like half of all drugs and that could in principle have been noticed by patient who felt bad after drinking a common household beverage, was bro science. Which is not to say "and therefore just do whatever", but just to point out that there's plausibly a lot of low-hanging fruit still left if you can figure out where to pick it.
  - 7e 2y ago
    The problem is you can't figure out where to pick it; it's lost in a sea of superstitious noise. Even if you could find this fruit easily, "a food that cures cancer when eaten" does not exist. That would surface in epidemiological studies very quickly.
    - lambdaphagy 2y ago
      I admire your optimism in epidemiology. In point of fact, though, we have a rough natural experiment in the form of a food that doesn't cure a disease, but rather makes half of all drugs worse. That's very valuable knowledge, and under ideal epistemic conditions it might have been discovered within a few years of organized drug discovery as such. Yet was not widely known until the 1990s. So that's a failed positive control, which suggests that our practical capabilities to detect these kinds of effects are limited. Understandably so, given that there is no general requirement for dietary logging in clinical trials. That said, "a food that cures cancer when eaten" is not the bar for experimentation. More realistic might be something like "a dietary or behavioral protocol that, in some way, ameliorates this or that illness". For organisms with our body plan, "a cure for cancer" is like talking about "a cure for defection". But clearly there's "stuff that is efficacious against particular instances of cancer", a lot of which we found through techniques like natural product screens, i.e. "just trying stuff", rather than via rational drug design.
nikisweeting 2y ago
OP is explicitly asking for hacks and "out there" solutions, I think this is a reasonable place to post anecdata, papers, personal theories, etc. as long as people state their confidence level and link to sources when possible
- kerkeslager 2y ago
  I disagree. OP is just asking for medical misinformation, and it would be irresponsible to provide it. Self-assessed confidence levels are basically useless because the most confident people are generally the most ignorant. It's causal: ignorance causes people to be confident. The more you know, the more you realize how little you know.
  - mllev 2y ago
    OP is asking for lesser-known possible treatments/trials/diets/whatever for a friend who is probably weeks to months from death. And your contribution is to stop people from helping them because of something about what now?
    - ibash 2y ago
      Because it’s actively harmful.
    - kerkeslager 2y ago
      > And your contribution is to stop people from helping them No. In the vast majority of cases, answering this question as intended isn't helping them, it's actively harming them. > because of something about what now You're responding to a post which explains this. If you understood the post, faking confusion is dishonest. If you didn't understand the post, you weren't qualified to disagree with it.
      - nikisweeting 2y ago
        This removes so much agency from the people involved. If I were dying of cancer and asked for "out there" solutions, I wouldn't want people hand-wringing about whether it's morally ok to share unconfirmed theories. Gimme everything you got at all levels of certainty, and let me decide what I want to try and not try. If I decide I don't want to try anything, or none of the suggestions have enough evidence to be worth trying and I'd rather travel around the world and skydive with my wife the last few months, that's ok too! But none of us can pretend to know what they're actually going through, we can only offer what it asked and let them decide.
_DeadFred_ 2y ago
↑This. Stop. No. Don't go down the false hope path. It's cruel AF and puts off acceptance, wasting time that they can put to better use post acceptance. Maybe let your friend explore what they want to do and you just give support. Celebrate what they celebrate and cry with them when they cry. Find(or better make) them some comfy/cute hats. If you want to research the things about the hospital, the procedures they are getting, the oncologists they are seeing, and drop re-affirming 'you are getting the best care'. They want to feel like they are getting good treatment. Not like 'if only they got something else they would have a better chance'. But reality is, they are getting the care they are going to getting. Hype the heck out of it, reassure them. Even if the care sucks, find something to hype. Ease the 'if only' burden/regret/fear on them, don't contribute to it with 'if only you could go see Joel Olsteen's prosparity preaching in person and he blessed you' or go see John of God in Brazil or something. If nothing else hype that the WHO ranked France in best overall healthcare. Leave out the 'in 2000'. 'Thank god we are in France, who the WHO ranked best in overall healthcare'. Find things for them to take comfort in. https://www.who.int/news/item/07-02-2000-world-health-organization-assesses-the-world's-health-systems https://www.who.int/news/item/07-02-2000-world-health-organi...
- deleted 2y ago
  [deleted]
- mllev 2y ago
  I guess hope can be false now.
  - JumpCrisscross 2y ago
    > guess hope can be false now "Hope is false if it is based on ignorance of the correct assessment of the probability that a desire is fulfilled or on ignorance with regard to the desirability of the object of desire. Hope is justified—realistic—when the hoping person knows and accepts experts’ judgement about the probability of hope fulfillment. However, I argued, what matters for evaluating a person’s hope is not only whether it is realistic, but also whether it is reasonable in light of the aim and goals for which the person strives in (the remainder of) his life ...a person’s hope that an (experimental) treatment may prolong his or her life or improve the quality of his or her life can only be called false when he or she thinks that the chances of personal benefits are greater than those estimated by experts. If he or she does accept their judgement, continuing to hope is realistic. Hope is moreover reasonable if it contributes to realizing what a person strives for in (the remainder of) his life" [1]. [1] https://pmc.ncbi.nlm.nih.gov/articles/PMC6900746/#s10 https://pmc.ncbi.nlm.nih.gov/articles/PMC6900746/#s10
d--b 2y ago
This fucking pisses me off. The current treatments ARE essential oils, and EVERY FUCKING ONE is recommending my friend he goes through chemo, radiation therapy and risky surgery, all of which are proved to be extremely debilitating, in the sake of following the standard protocol, with a potential reward of living some weeks more. Meanwhile, it is proven that the Zika virus does kill GBM cells in humans. This is what causes microcephaly in newborns. Inoculating the Zika virus in a controlled environment yields zero risk, and has no side effects. Yet, no one will inject a Zika virus sample to a patient, because it is not protocol. I have no idea why the random pub med articles aren’t reproduced. But what I know, is that maybe one of them is onto something. I was mostly wondering if anyone in the community had found it. Remember than when the AIDS epidemic broke out. The doctors and labs didn’t help much. People took things in their own hands and tried stuff, and in the end, they found things that worked. Sure it’s a moonshot. Why not try a moonshot? It’s stupid not to. The ETH Zurich article I posted said something like “don’t try this at home, self medicating would be incalculable risk”, but is that a joke? Not trying anything leads to certain death.
- _yb2s 2y ago
  > Why not try a moonshot? It’s stupid not to. I'm a researcher in the biosciences, and know how unlikely it is that these one-off and in-vitro findings are likely to work but I would 100% scour the literature and try experimental treatments on myself if I were in this situation. You've made a good start in looking at some interesting ideas, and there are a few more in the replies. At the very least, it might provide some information that would help someone else. I'm not sure how one would actually go about getting infected with zika. I'd also try to come to terms with the fact that these are very unlikely to work, and focus on getting my life in order, according to my values and goals. I'd also re-read Epictetus. However, I will also provide what you are asking for here: If you want an anti-authoritarian biohacker with radical but not stupid ideas - especially about treating cancer look at the late Ray Peat's blog. I've published well received academic papers inspired by his work. But avoid his online followers, they are idiots. Much of his specific ideas and suggestions are basically outdated, but his general attitude towards understanding biology and solving problems on your own is excellent. However, if it were not me, I would not suggest anything unless they very seriously asked me to do so. I am very much into weird medical ideas and theories, have a biomedical PhD, and yet do not try to play doctor to my friends and family. Sometimes I will offer to share ideas if they want to hear them, but leave it at that.
avgDev 2y ago
I think it is ok to seek some alternatives or "hacks" for some hard to diagnose chronic stuff like fatigue, as there are so many things that can cause this. However, when you know you have certain disease there is nothing like talking to an expert in the field. Internet is filled with garbage and misinformation now. People selling snake oil. HackerNews is also filled with people who think they know better than experts because they can write code.
- ryandrake 2y ago
  Reminds me of the joke: What do you call alternative medicine that works? Medicine. If any of the wild things posted in threads like these actually worked, those things just be considered standard care.
  - avgDev 2y ago
    For sure, I have an example from my life even. I've seen a well regarded specials for a neurological issue I am having. She knows everything I've learned over the years and all about emerging research and treatments. Suggested supplements I already knew about and meds. Also, said nothing is a silver bullet.

by ausbah 2y ago

7e 2y ago

It's false hope, swallowed hook line and sinker.

d--b 2y ago
Sure this is the right place for a good word
mllev 2y ago
Person with cancer: I hope this new treatment works for me You: FALSE!

lambdaphagy 2y ago

My impression formed from my time in cancer drug discovery is that bro science is, within practical bounds, a perfectly reasonable option for one arm of a comprehensive plan for treatment. A lot of things that sound like bro science are actually broadly supported in the literature. But studying this stuff is hard because of all of the usual issues with human subjects, the less than complete reliability of our epistemic institutions, and the infeasibility of running enough trials to address every indication in every subcohort. So if anecdata supports some intervention that that isn't aggressively inconsistent with basic theory, won't make you miserable for what might be the rest of your life, and which you could try with the sober understanding that your One Weird Trick might not work, why not? If nothing else, a well-documented case study with good adherence tells us of one more thing that didn't work, which is hardly the worst parting gift to the world.

lambdaphagy 2y ago
To give a practical example, grapefruit juice contains some compounds that inhibit CYP3A4, a metabolic enzyme that influences the metabolism and absorption of many drugs, which is why many prescriptions tell you not to drink it while taking a given medication. This interaction was not discovered until 1989, and not reported until two years after that. So before 1991, a simple dietary intervention that affected like half of all drugs and that could in principle have been noticed by patient who felt bad after drinking a common household beverage, was bro science. Which is not to say "and therefore just do whatever", but just to point out that there's plausibly a lot of low-hanging fruit still left if you can figure out where to pick it.
- 7e 2y ago
  The problem is you can't figure out where to pick it; it's lost in a sea of superstitious noise. Even if you could find this fruit easily, "a food that cures cancer when eaten" does not exist. That would surface in epidemiological studies very quickly.
  - lambdaphagy 2y ago
    I admire your optimism in epidemiology. In point of fact, though, we have a rough natural experiment in the form of a food that doesn't cure a disease, but rather makes half of all drugs worse. That's very valuable knowledge, and under ideal epistemic conditions it might have been discovered within a few years of organized drug discovery as such. Yet was not widely known until the 1990s. So that's a failed positive control, which suggests that our practical capabilities to detect these kinds of effects are limited. Understandably so, given that there is no general requirement for dietary logging in clinical trials. That said, "a food that cures cancer when eaten" is not the bar for experimentation. More realistic might be something like "a dietary or behavioral protocol that, in some way, ameliorates this or that illness". For organisms with our body plan, "a cure for cancer" is like talking about "a cure for defection". But clearly there's "stuff that is efficacious against particular instances of cancer", a lot of which we found through techniques like natural product screens, i.e. "just trying stuff", rather than via rational drug design.

nikisweeting 2y ago

OP is explicitly asking for hacks and "out there" solutions, I think this is a reasonable place to post anecdata, papers, personal theories, etc. as long as people state their confidence level and link to sources when possible

kerkeslager 2y ago
I disagree. OP is just asking for medical misinformation, and it would be irresponsible to provide it. Self-assessed confidence levels are basically useless because the most confident people are generally the most ignorant. It's causal: ignorance causes people to be confident. The more you know, the more you realize how little you know.
- mllev 2y ago
  OP is asking for lesser-known possible treatments/trials/diets/whatever for a friend who is probably weeks to months from death. And your contribution is to stop people from helping them because of something about what now?
  - ibash 2y ago
    Because it’s actively harmful.
  - kerkeslager 2y ago
    > And your contribution is to stop people from helping them No. In the vast majority of cases, answering this question as intended isn't helping them, it's actively harming them. > because of something about what now You're responding to a post which explains this. If you understood the post, faking confusion is dishonest. If you didn't understand the post, you weren't qualified to disagree with it.
    - nikisweeting 2y ago
      This removes so much agency from the people involved. If I were dying of cancer and asked for "out there" solutions, I wouldn't want people hand-wringing about whether it's morally ok to share unconfirmed theories. Gimme everything you got at all levels of certainty, and let me decide what I want to try and not try. If I decide I don't want to try anything, or none of the suggestions have enough evidence to be worth trying and I'd rather travel around the world and skydive with my wife the last few months, that's ok too! But none of us can pretend to know what they're actually going through, we can only offer what it asked and let them decide.

_DeadFred_ 2y ago

↑This. Stop. No. Don't go down the false hope path. It's cruel AF and puts off acceptance, wasting time that they can put to better use post acceptance. Maybe let your friend explore what they want to do and you just give support. Celebrate what they celebrate and cry with them when they cry. Find(or better make) them some comfy/cute hats. If you want to research the things about the hospital, the procedures they are getting, the oncologists they are seeing, and drop re-affirming 'you are getting the best care'. They want to feel like they are getting good treatment. Not like 'if only they got something else they would have a better chance'. But reality is, they are getting the care they are going to getting. Hype the heck out of it, reassure them. Even if the care sucks, find something to hype. Ease the 'if only' burden/regret/fear on them, don't contribute to it with 'if only you could go see Joel Olsteen's prosparity preaching in person and he blessed you' or go see John of God in Brazil or something. If nothing else hype that the WHO ranked France in best overall healthcare. Leave out the 'in 2000'. 'Thank god we are in France, who the WHO ranked best in overall healthcare'. Find things for them to take comfort in. https://www.who.int/news/item/07-02-2000-world-health-organization-assesses-the-world's-health-systems https://www.who.int/news/item/07-02-2000-world-health-organi...

deleted 2y ago
[deleted]
mllev 2y ago
I guess hope can be false now.
- JumpCrisscross 2y ago
  > guess hope can be false now "Hope is false if it is based on ignorance of the correct assessment of the probability that a desire is fulfilled or on ignorance with regard to the desirability of the object of desire. Hope is justified—realistic—when the hoping person knows and accepts experts’ judgement about the probability of hope fulfillment. However, I argued, what matters for evaluating a person’s hope is not only whether it is realistic, but also whether it is reasonable in light of the aim and goals for which the person strives in (the remainder of) his life ...a person’s hope that an (experimental) treatment may prolong his or her life or improve the quality of his or her life can only be called false when he or she thinks that the chances of personal benefits are greater than those estimated by experts. If he or she does accept their judgement, continuing to hope is realistic. Hope is moreover reasonable if it contributes to realizing what a person strives for in (the remainder of) his life" [1]. [1] https://pmc.ncbi.nlm.nih.gov/articles/PMC6900746/#s10 https://pmc.ncbi.nlm.nih.gov/articles/PMC6900746/#s10

d--b 2y ago

This fucking pisses me off. The current treatments ARE essential oils, and EVERY FUCKING ONE is recommending my friend he goes through chemo, radiation therapy and risky surgery, all of which are proved to be extremely debilitating, in the sake of following the standard protocol, with a potential reward of living some weeks more. Meanwhile, it is proven that the Zika virus does kill GBM cells in humans. This is what causes microcephaly in newborns. Inoculating the Zika virus in a controlled environment yields zero risk, and has no side effects. Yet, no one will inject a Zika virus sample to a patient, because it is not protocol. I have no idea why the random pub med articles aren’t reproduced. But what I know, is that maybe one of them is onto something. I was mostly wondering if anyone in the community had found it. Remember than when the AIDS epidemic broke out. The doctors and labs didn’t help much. People took things in their own hands and tried stuff, and in the end, they found things that worked. Sure it’s a moonshot. Why not try a moonshot? It’s stupid not to. The ETH Zurich article I posted said something like “don’t try this at home, self medicating would be incalculable risk”, but is that a joke? Not trying anything leads to certain death.

_yb2s 2y ago
> Why not try a moonshot? It’s stupid not to. I'm a researcher in the biosciences, and know how unlikely it is that these one-off and in-vitro findings are likely to work but I would 100% scour the literature and try experimental treatments on myself if I were in this situation. You've made a good start in looking at some interesting ideas, and there are a few more in the replies. At the very least, it might provide some information that would help someone else. I'm not sure how one would actually go about getting infected with zika. I'd also try to come to terms with the fact that these are very unlikely to work, and focus on getting my life in order, according to my values and goals. I'd also re-read Epictetus. However, I will also provide what you are asking for here: If you want an anti-authoritarian biohacker with radical but not stupid ideas - especially about treating cancer look at the late Ray Peat's blog. I've published well received academic papers inspired by his work. But avoid his online followers, they are idiots. Much of his specific ideas and suggestions are basically outdated, but his general attitude towards understanding biology and solving problems on your own is excellent. However, if it were not me, I would not suggest anything unless they very seriously asked me to do so. I am very much into weird medical ideas and theories, have a biomedical PhD, and yet do not try to play doctor to my friends and family. Sometimes I will offer to share ideas if they want to hear them, but leave it at that.

avgDev 2y ago

I think it is ok to seek some alternatives or "hacks" for some hard to diagnose chronic stuff like fatigue, as there are so many things that can cause this. However, when you know you have certain disease there is nothing like talking to an expert in the field. Internet is filled with garbage and misinformation now. People selling snake oil. HackerNews is also filled with people who think they know better than experts because they can write code.

ryandrake 2y ago
Reminds me of the joke: What do you call alternative medicine that works? Medicine. If any of the wild things posted in threads like these actually worked, those things just be considered standard care.
- avgDev 2y ago
  For sure, I have an example from my life even. I've seen a well regarded specials for a neurological issue I am having. She knows everything I've learned over the years and all about emerging research and treatments. Suggested supplements I already knew about and meds. Also, said nothing is a silver bullet.