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I’m very excited to see people doing empirical work on what things we care about are in fact dominated by their extremes. At least after adjusting for survey issues, statements like
seem to be a substantial improvement on theoretical arguments about properties of distributions. (Personal views only.)
Hi @Kit! Given your comment, I thought you might be interested in some related research we just published here. :)
Generally I really find this research agenda interesting. I have only skimmed this post, but I also like your analysis the way you go about it.
One nitpick:
I think this is hyperbole. I reviewed the literature a while ago, and while I do agree that there is some suggestive evidence that this is true, I do not think that it is so strong as to warrant the claims you make and there are many qualifications. Also, I think you should cite the relevant studies on this subject (https://scholar.google.com/scholar?as_ylo=2015&q=LSD+cluster+headaches&hl=en&as_sdt=0,5).
Thank you. The survey said that 68% of sufferers who have used psychedelics found gave them a rating of 4 or 5, where 5 means “They have completely eliminated the cluster headaches”. I would certainly stand by the claim that “there are millions of people suffering needlessly from this condition who could be nearly-instantly cured with something as simple as growing and eating some magic mushrooms.” We’ve interviewed people for whom sub-hallucinogenic doses of DMT and psilocybin took a 10⁄10 pain CH all the way to a 1⁄10 or 0⁄10. And in the case of DMT, due to its method of administration, this takes place within seconds (more than one but less than 10). Even if this works only for, say, 20% of the sufferers, it is still millions in absolute terms.
Thanks for saying: “Generally I really find this research agenda interesting”. My experience has been that few people take seriously the long-tails of pleasure and pain. This is precisely the sort of missing piece of information that can add an entire new wing to EA.
For what it’s worth, this seems like a pretty big deal to me if it were true. Is there any quick QALY estimate or similar for how much things can be improved if everyone had quick access to DMT or similar?
One quick thought: it could be neat experiment to make $2k of Facebook ads to target people with these issues, pointing to a specific webpage the discusses how these people could get treatment. That said, I of course realize some may not be legal, so it could be tricky.
Still seems worth it, FB might just eventually ban. ( I sort of doubt anything would happen if you link to an informational infographic)
In the article specifically about N,N-DMT as a possible treatment for CHs, Quintin added a rough QALY calculation (I should add that any QALY estimate concerning CHs and other ultra-painful disorders will typically severely underestimate the value of the interventions, given the logarithmic nature of pain scales):
Thanks!
Some quick thoughts:
One quick way to get people to not take you seriously is with a bad cost effectiveness estimate. There’s a much bigger risk of doing a sloppy/overconfident job than benefit of having a high number at the end of it (in EA circles). Also, there is a reputation of these estimates to both produce amazing numbers and also be very wrong, so while I support attempts, I’d also recommend lots of clarification, hedging, and consideration of ways the number could be poor. I think the default expectation is for the number to not be great; but even if the median isn’t good, it’s possible upon further investigation it could be better than expected, which could be quite worthwhile.
“to reach all chronic sufferers” → I’d recommend targeting 30%-60% of sufferers. The last several percent would be much more expensive.
I’m quite skeptical of the click → cure stats in particular. For-profit websites often have a 1% rate of people who go from click → purchase, and this could be a pretty significant amount of work to purchase.
Is this equation taking into account that the “cure” could last for many years? Would the result be in “QALYs per year”?
I’m sure you’ve answered this elsewhere, but why the American focus? Would it be possible in India or similar?
This estimation seems like something that Charity Entrepreneurship would have a lot more experience in. The program seems quite similar to some of their others.
I’d suggest reading up on the mini-fiasco of the leafletting research, if you haven’t yet. Just make sure not to make some of the mistakes made around that. Some context: https://animalcharityevaluators.org/blog/ace-highlight-updated-leafleting-intervention-report/ https://acesounderglass.com/2015/04/24/leaflets-are-ineffective-tell-your-friends/ https://medium.com/@harrisonnathan/the-problems-with-animal-charity-evaluators-in-brief-cd56b8cb5908
Consider using Guesstimate for clarity, but I’m biased :)
Kudos for the efforts, and good luck!
This post significantly adds to the conversation in Effective Altruism about how pain is distributed. As explained in the review of Log Scales, understanding that intense pain follows a long-tail distributions significantly changes the effectiveness landscape for possible altruistic interventions. In particular, this analysis shows that finding the top 5% of people who suffer the most in a given medical condition and treating them as the priority will allow us to target a very large fraction of the total pain such a condition generates. In the case of cluster headaches, the distribution is extremely skewed: 5% of sufferers experience over 50% of all cluster headaches.
More so, the survey also showed that the leading cause for why sufferers don’t use tryptamines to treat their condition is the difficulty of acquiring them. Thus, changing the legal landscape via e.g. providing programs for the easy access to tryptamines to sufferers of migraines and cluster headaches might be a very cost-effective way of massively reducing suffering throughout the world.
Zooming out, perhaps the significance of this goes beyond cluster headaches in particular: it perhaps hints at a more significant paradigmatic change for analyzing the cost-effectiveness of interventions.
Nearly five years since this post was written, and still so little attention and virtually no funding in EA is dedicated to this problem. Ignoring the logarithmic distribution of suffering continues to be my top contender for biggest blindspot in the EA community. My heart goes out to the likely millions of people worldwide who suffer hell-level pain on a regular basis. I’ll continue to think of ways to help.
Maybe this is addressed somewhere and I’ve missed it, but “do you use tryptamines to treat your headaches” shouldn’t be a yes/no question—shouldn’t the options be “never tried,” “tried and stopped for some reason” or “yes I use them to treat my headaches”?
It seems like the current framing is going to overrepresent people who find tryptamines helpful, because people who tried them and didn’t find them effective or discontinued due to side effects are currently in the “don’t use tryptamines” category.
That’s a good point, thank you. We should distinguish between lifetime use and current use in future surveys. Perhaps even asking whether “they worked the first time you used them” to see if people who currently use them had a better reaction to their first try relative to those who did try them at some point but do not currently use them.
I would add that other reasons why people might have used them in the past but don’t currently include “can’t access it now”, “too afraid of legal repercussions”, and “social stigma”. While discontinuing them due to side-effects and lack of effectiveness can make them look more effective than they are among the “use them” group, the other reasons for discontinuation do not have this effect. I don’t know what % of past users discontinued for which reason, and that seems like a good thing to find out.
This is very interesting, thanks for doing this work.
I would note that members of a cluster headache subreddit are unlikely to be representative of the broader population that generated the 1/1000 figure. Presumably they experience a disproportionately large number of headaches.
I completely agree that the members of a cluster headache subreddit or facebook group are not necessarily representative, and in fact quite likely not representative at all.
I think that the conclusion that the distribution follows a long-tail regardless is still accurate. I reason this based on the following point: even if the probability of participating in the survey increased exponentially as a function of the number of times one experiences CHs per year (or sigmoid at the limit), you would nonetheless not be able to make a Gaussian distribution look like a log-normal. The reason is that the rate at which a Gaussian decreases is proportional to the inverse *squared* of the distance from the mean. So we would still get a net decrease at an exponential rate, which does not produce a long-tail (just a somewhat more bulky tail that still tapers off rather quickly). For it to exhibit a long-tail, the probability of participating in the survey as a function of the number of CHs per year would have to grow *doubly* exponentially, at which point we really run out very quickly of possible participants.
That said, I do agree that there is likely an over-estimation of the frequency, but I would argue due to the above reasons that such over-estimation can’t account for the long-tail.
I’m less optimistic about the use of surveys on whether people think tryptamines will/did work:
‘And do they work?’ doesn’t seem like a question that will be accurately answered by asking people whether it worked for them. (Reversion to the mean being my main concern.)
Non-users are asked whether tryptamines ‘could be effective for treating your cluster headaches’, which could be interpreted as a judgement on whether it works for anyone or whether it will work for them (for which the correct answer seems to be ‘maybe’). Users are asked whether it worked for them specifically. Directly computing the difference between these answers doesn’t seem meaningful.
You say ‘we’ (as in ‘we are researching’) a lot, but who are ‘we’?
Depends on context. In most cases the ‘we’ refers to my team and I at the Qualia Research Institute. For example: “Since a number of interviews we’ve conducted have shown that even sub-hallucinogenic doses of DMT can abort cluster headaches” refers to QRI (with other members of the research group having conducted such interviews).
I should note that the word is also used in the ‘didactic we’ sense a number of times (as in “we will explore the era of the dinosaurs together” in a National Geographic documentary).
What do you make of Emgality? Looks like a relatively small effect, but the absolute effect could still be large given the severity of Cluster Headaches.
It’s great that it works for some people, some of the time. In absolute terms, it is a massive good, so it should be promoted more. Pragmatically it might make sense to emphasize it right now given the low probability that DMT will be approved as a treatment in the next few years, so until then Emgality should be discussed more. That said, yes, in terms of % relief it still is in a completely different class than DMT. That is, it tends to reduce incidence rather than get rid of them, and it is only approved for episodic (rather than chronic) CHs, which account for a relatively small % of the number of CHs experienced, as described in this article (due to the long-tail).