Luck based medicine: my resentful story of becoming a medical miracle

My own similar story like this:

I had a bunch of weird symptoms starting several months after I was really sick with what was maybe COVID, maybe some kind of SARS, and at least the worst flu of my life by 3 orders of magnitude. Symptoms kind of matched pericarditis, but there was no evidence of that. I wore a heart monitor for two weeks, turned up nothing either. I would occasionally get diabetes in the sense that diabetes is a symptom (excessive, unquenchable thirst), but blood glucose monitoring proved that I was, if anything, unusually healthy in that regard. I also experienced occasional vision blurriness, palpitations, and pain extending into my next and left arm. Probably some other minor things too that I've forgotten.

After almost a year of going to doctors and ruling things out my PCP recommended a dietitian, in part because I think he was out of ideas and dealing with a patient who had been reasonable for years but was now complaining about mystery symptoms that couldn't be explained.

After two very expensive hours the dietitian recommended I go on an elimination diet because it was "probably gluten". I rolled my eyes. I had eaten gluten just fine for years, no family histor... (read more)

[-]EGI3y147

The Mg hypothesis is easy to test: Get some MgCl or MgCO3 and take some with gluten containing food. Use a quantity similar to the Mg dose found in the amount of coconut water you found to help you. If it helps it is the a tive ingredient. If not, it may still be invloved but not sufficient.

[-]M. Y. Zuo3y112

I had eaten gluten just fine for years, no family history of gluten issues, DNA testing negative for celiac, etc.

Methods of growing and processing wheat have changed dramatically in the last few decades. Especially for pre-packaged sliced bread, buns for fast food, and anything else bought by a serious cost cutting purchaser.

i.e. The gluten found in any product you can buy for a few dollars in the U.S. or Canada is almost certainly different then the gluten any of your parents or grandparents had eaten.

This isn't really talked about outside of industry experts and enthusiasts, and maybe some very agitated celiac adjacent folks, because there is no feasible way to go back to the old way of wheat growing and processing without bread doubling or tripling in price.

There are probably niche growers for luxury markets, and of course 'gluten free' bread, if you really want to eat bread regardless.

6Gordon Seidoh Worley3y

I've gotten the advice from a few people that I might be able to eat things made with "heritage" wheat, but realistically I'm not going to make my own bread, cakes, etc. in general to try this out. If this pans out maybe over decades we could effect a shift to different varieties that more people can eat, but I think that's going to require some strong evidence to get food industry players to align around the choice.

3Tiuto3y

Isn't making your own bread really easy, you just need a bread maker put a bunch of ingredients in, press the button and wait. Seems like it might be worth a try. But obviously you know more about your situation than me.

[-]Gordon Seidoh Worley3y131

That it involves many more steps than put a thing in the microwave and pressing buttons means it's a cooking task I'm only going to perform for special occasions, if ever. I realize others like cooking a lot more and would love an excuse to "have to" make their own bread, but not me.

2juliawise3y

I don't know what the supposed changes in growing and processing wheat are, but a lot of that will presumably have happened by the stage it's flour. So doing the mixing and baking yourself might not change anything.

2Portia2y

At least if the factor involved is gluten, afaik, the heritage forms are often even higher. I have heard anecdotally from a bunch of people that they do better on heritage flours, but I do not think gluten can be the cause of that. Notably, a bunch of people who do badly on wheat do perfectly fine when eating pure gluten (seitan), so I think they are avoiding whatever is the trigger only indirectly, and in the process, likely missing out on a lot of joy and wasting a lot of money. But then, I also understand that anyone who has found something that works for once really no longer cares to make any experiments.

8Morpheus3y

How on earth did you privelege the hypothesis that coconut water helps? Is that common?

6Gordon Seidoh Worley3y

It was an accident mostly. I drank some coconut water when I had extreme thirst because I thought maybe something something electrolytes and it cleared it right up even though similar things that should have worked if it was an electrolyte imbalance didn't. Also, I'm not sure where you live, but where I am in the Bay Area coconut water is everywhere and a pretty common thing that lots of people drink, so it wasn't even like I had to try very hard to find it. Before I found it had this medicinal property, I was probably already drinking coconut water several times a month just because I liked it, and drinking water from fresh coconut whenever I could get ahold of one also because I like it.

2Morpheus3y

Yeah makes sense. I sort of pictured you stopping your glutenfree diet to test this, which didn't make any sense.

4Morpheus3y

I live in Germany, coconut water is easily available, but I did not know people actually consuming that regularly.

3GeneSmith3y

This is kind of a crackpot theory, but I wonder if it could explain your experience: Novel viral infections trigger the formation of new kinds of antibodies. We have strong evidence that some viruses can trigger the formation of antibodies that bind to human cells in addition to those of the virus. Two examples of this are bites from the Lone Star Tick causing red meat allergies and the Epstein-Barr virus causing multiple sclerosis. In the case of the latter, only a very small subset of people who get Epstein-Barr go on to develop MS. Maybe your viral infection caused your immune system to produce antibodies that happened to bind to gluten along with the viral proteins they were designed for.

2Portia2y

I think anyone with a severe diet issue should try a proper elimination diet with carefully documented reintroduction at least once, also taking into account things like food storage times (affects histamines) and processing (affects FODMAPs). For me at least, symptoms follow about three days after I consumed the thing in question (in the form of inflammation rising and me getting severely sick), and I need to eliminate for a while for it to quiet down, and the quantity and context matter. Until I went on an elimination diet, it seemed completely random and impossible to make sense of, because too much was varying all at once, and I never actually felt okay. I also grouped together a bunch of things that were importantly different. (E.g. whether I tolerate soy depends on how it was processed. Whether I tolerate fructose depends on whether it is paired with glucose. Etc.) There were symptoms I was barely even aware of because I had never been without long enough for them to fade.

[-]DirectedEvolution3y3913

Drug development and genomics already use luck-based approaches. I wonder if doctors just worry about not looking respectable. A psychiatrist I know always seems a little defensive when the problem of finding the right med for a patient comes up, as if he were afraid others might see it as a bit seedy that he just tries things until something works.

Geneticists will silence every single gene in C. elegans to see the effect on longevity, then construct mechanistic hypotheses based on the the genes that had an effect.

If you read descriptions of how a genome-wide association study (GWAS) works, the field's very clear that the method has trouble with:

Traits heavily determined by a small number of rare but but powerful alleles
Traits determined by a very large number of common but individually weak alleles

In animal studies, GWAS can be conplemented with QTL mapping to address these problems. Otherwise, you're stuck with doing massive, massive studies on genetically diverse populations to try and get a full picture of the genetic architecture of a given trait.

In nutrition, it would not surprise me at all if Boswelia occasionally has a powerful effect for a small number of patients, ... (read more)

[-]Elizabeth3y131

At some point, I'd like to consider whether there's value in developing a protocol + software + device for facilitating personalized randomly controlled trials beyond whatever is the Pareto frontier for current enthusiasts

I know someone who's working on this and I love the idea, although thus far his app is absolutely useless for something that doesn't kick in and wear off the same day and I haven't verified it for that use case either. I also have an entrepreneur client whose very interested in this and would plausibly provide support to someone working on it, but it's not his own top priority.

8DirectedEvolution3y

Tl;dr is tl;dr Let's say your problem is reliable and obvious. Get a sample pack of pills and remedies. Take 1 pill at a time. If it's a miracle cure, keep taking it. If not, try the next one. No fancy stuff required. Does anyone sell a sample pack like this? Tl;dr If your mystery malady is obvious, reliable, and rare in the general population, then you can simply try pills one at a time, one pill at a time, to see if they provide a reliable treatment. If so, then this will become apparent right away, and you can keep taking it a few more times to confirm it works reliably. It should only take a few trials to show the pill works for you. If the pill doesn't work, you can set it aside after one try and try the next one. This would not help you if the problem is a deficiency or excess of some compound that takes time to build up. It would only help if the pill had an immediate, obvious effect for your condition - a "miracle cure." This approach requires no fancy statistics, devices, or complexities of taking multiple pills at once. The easiest way to overcome the bottleneck would be if a company sold "sample packs" containing 1 pill of eat type. You'd take them one at a time, see if they fixed the problem, and if they did, you'd buy a larger quantity of that specific pill and keep experimenting to confirm the result. Long: I could imagine a fruitful collaboration between a mechanical engineer, a statistician, a programmer, and a biomedical researcher/doctor. The approach could be Bayes' law-based. Using your problem as an example, here's how it might work: Does eating meat (cooked, store-bought, fresh, 50g) make me nauseous? * P(H): You specify how common it is in the human population for eating meat to cause nausea * P(E): You also specify how common it is for a member of the human population to eat meat and get nauseous, whether or not there's a causal relationship * P(E|H): Finally, you specify how likely it would be for you to get nauseous after eatin

4Elizabeth3y

TBC: the client is interested scaleable software that people intuitively find useful for experimenting on themselves and can combine selfishly motivated individual data into useful aggregate data. But there's a point here I want to argue. It seems like you're assuming all drug interactions are bad. What if you need three things in combination to see the effect, and then it works really well?

2DirectedEvolution3y

That’s entirely possible. However, it introduces a level of risk that isn’t as present when you take one at a time. It’s unlikely that a given supplement will kill you at normal doses. Such a severe side effect would have been detected and the supplement most likely wouldn’t be sold. But it’s not impossible that certain rare combinations of drugs might have lethal side effects in combination, and that you might stumble across such a combination by chance. The risk of this happening seems in my judgment to outweigh the potential benefit of finding the right drug for a chronic condition faster. Examples: https://www.google.com/amp/s/www.news24.com/amp/health24/medical/backache/news/7-medication-combinations-that-could-be-deadly-20160829 I’m not certain if it’s plausible an interaction between supplements could kill you in a few days. Even the examples here seem to take a while to work. The only potentially instantly lethal drugs I’ve seen are things like alcohol and heroine. But I would shy away from taking combinations - that’s just where my risk budget is at. I could be persuaded otherwise.

1mcint2y

The blinded aspect is hard. * If you're concerned about supplement interactions, you should be concerned about supplements effects at all. People should seek based on possible luck, but should know (and be able to tell doctors) what they're putting into their bodies, and take contextual advice from relatives, friends, and community. * Collecting individuals susceptible to effective treatment with intervention X and having them ready for researchers to talk to, test more directly—is this already done? I suppose around individual notable conditions: celiac disease and gluten intolerance, or n=1 genetic issue self-diagnosis. * Some conditions have an intermittency, that makes it hard to assess interventions with unknown timing. Perhaps blinded timing studies, self-studies, after something is found to work. Perhaps helping people to log and journal symptoms and effects during the blinded periods, as well as analyze, interpret, and share them—especially in ways that make it easier for others to trust.

5degrews3y

Wow, yes. I've thought about this before and it feels like this would be so valuable. It's been a while since I've looked into this space but as far as I've been able to tell the Pareto frontier is terrible. I'm going to try to spend some time on this over the next few days.

2rain8dome93y

Collection is really just a matter of finding the right devices and taking the time to use them. Analysis outside of immediate obvious effect can become difficult. If the effect is subtle and drowned in other effects, or hard to measure. If the intervention is not something user can easily or wants to reproduce. If the effect take long time to build up, or is shifted in time from intervention. If the successful effect only happens under several conditions or several interventions together. If the spray and pray approach is dangerous. If the spray and pray approach only hits gold once in a while. Multiple comparison problem (see wikipedia). If user is bad at keeping records. There are probably more. There are many many apps that just do correlation and none that do anything more. Here is a list of both problems and apps.

2mcint2y

Your link is broken, and while Wikipedia may be a guide to problems, generically, I'm curious about the apps, and the problems specifically relevant.

2rain8dome92y

https://wiki.openhumans.org/wiki/Finding_relations_between_variables_in_time_series This is the link I meant to post.

2DirectedEvolution3y

I agree that the highest-leverage place to start is probably the paradigm of encouraging people with obvious long-lasting chronic problems to look for immediate obvious effects by doing maximal spray n pray. Equivalents of "have nausea from cancer/chemo daily -> medical marijuana -> no more problems." Once we get away from that, I think that systems for collection, analysis, and self-blinding become important. There are a lot of details and trivial inconveniences in any research project, and most people just aren't equipped to work them out on their own. There's a lot you can do to smooth the path. For example, I can imagine a nootropics test kit. It would come with: * A standardized questionnaire that you fill out for every nootropic you try * A sample of nootropics to try along with placebos. Placebos would mimic the appearance of various drugs so it's impossible to tell which is which without deliberately unblinding yourself. the supply would be large enough to give you adequate power given the number of drugs you're trying. * An analytic framework that takes multiple comparisons etc. into account and lets you see if any correlations are statistically significant. * Perhaps packaging drugs in different ways so that you can order more of the things that work, but with a different appearance, to do a more focused experiment on the likeliest candidates. There's a lot of detail to work out in designing such a kit, but it's easy for me to see that it could convert an intractable problem into a do-able puzzle for a motivated and reasonably intelligent user.

-1rain8dome93y

Two issues, one of which I did not think of, out of like 20. EDIT: I suspect, including from my own experience, that many problems can be solved without resorting to advanced statistics. Often by using through experimental procedure instead. Like eliminating a food type for a month then not doing an intervention for a month. Repeat. Trying out medications sounds like it should be done safely. This safety can only be achieved by monitoring vital signs and analyzing them using advanced statistics.

[-]wslafleur3y*362

I've had gastrointestinal issues all my life. They started when I was a newborn; doctors diagnosed me as 'withholding', which is a polite way of implying that somebody is causing their own indigestion by refusing to take a shit. My distraught parents consulted several doctors who reaffirmed the original 'diagnosis' and finally resorted to administering enemas after other approaches had failed.

Presumably driven to innovation, half-mad with pain, sometime during my toilet training I arrived at a hack solution on my own. Rather than sitting on the toilet, I adopted an improvised 'squatting' posture with my feet planted on the seat, which my mother affectionately christened 'The Spider-Man pose'. I had no way of knowing at the time, of course, that a good chunk of the modern world does their business in a similar-if-somewhat-less-elevated position.

The new posture was a winner in the sense that I could actually move stool. Unfortunately, it did fuck all for my chronic constipation and extreme pain. So my adolescence was full of grueling, agonizing bowel movements that persisted into my teens. For me, it was ordinary to go six or seven days without shitting and then spend a tortured 2-3 ... (read more)

6ChristianKl3y

Have you seen https://www.lesswrong.com/posts/i48nw33pW9kuXsFBw/being-a-donor-for-fecal-microbiota-transplants-fmt-do-good ? If doing FMT once helped maybe doing it more frequently with even higher-quality material would help?

1wslafleur3y

That's super useful. Thank-you, I'll definitely follow-up on this. I imagine it would be.

1Portia2y

Mad respect. Hope you are okay now. It is bizarre how large an impact the microbiome has on human health. You have probably long tried this (in this case, feel free to ignore to hell and back), but for me, adding a probiotic with B. infantis in particular, supplementing psyllium (start low on that one) and consuming a lot of live, wild ferments (e.g. kimchi) made a huge difference.

1Steven Huang3y

I'm very curious about your homebrew FMT.. I'm assuming this was via a capsule of some sort and you ingested it? Or did you perform a self colonoscopy?

2wslafleur3y

The latter, although I don't think the gruesome details (beyond that) are really topical. I suspect that oral supplementation of this nature is significantly less effective and, other than a little mechanical discomfort, I don't know why anyone would opt for an oblique approach. The desired bacterial translocation is pretty straight-forward and you can achieve it in a similarly direct manner. If your desire for details extends beyond mere curiosity, I'll respond to a DM. Just trying to be courteous to other uses.

1[anonymous]3y

Very interesting story. One question: you said that the prognosis is "many rounds of heavy-duty antibiotics to hopefully induce periods of remission," but my understanding was that UC was autoimmune, and that the standard treatment was steroids or other immune system modulators? That's certainly what the Mayo Clinic says. Did the specialist mention any of these kinds of medications to you?

2wslafleur3y

Oh, yeah. I should probably amend that. It's basically steroids, antibiotics, anti-inflammatories (whichever flavor you can handle) and a strong recommendation that you increase your fiber intake. I mentioned having been given each of these in roughly equal portions, but then failed to include it as a part of the prognosis. My experience with corticosteroids was hit-or-miss, and I had severe, acute depression as a side-effect (I have never experienced anything like depression before or after, so it was pretty blatant). In any case, I don't really see steroids as being much better, since AFAIK, pretty much everyone relapses w/ steroids as well, and then they have to be adjusted. EDIT: I'm not specifically trying to be overly pessimistic/fatalist here, it's just that I've had a very bad time w/ traditional approaches to treatment for IBD. Take everything I say with a grain of salt, obviously. I think that people should do whatever they can to feel better. I'll update the post, and thank-you for the reply.

[-]Ruby3y3121

Curated. I appreciate this post for what I see as pushing on a frontier of reasoning, epistemics, and practical life advice. On LessWrong, we love well-researched, epistemically virtuous analyses of topics, and this post, to me, says something like "in some domains we really have a very poor idea, and you might want to try something different". And it's not an abstract point, I expect that this will change my behavior in future medical scenarios. Kudos.

[-]MondSemmel3y239

Fuck you every doctor who told me my digestive problems were in my head or my fault for being a bad patient and you couldn’t help me until I solved the problem that drove me to you. You were factually incorrect and you should feel terrible.

I sympathize so much with this and other sections of this post.

Here's a somewhat related story of my own.

Part 1

I developed sudden strong stomach cramps in 2017, and while I did get a relatively quick appointment for an endoscopy, it was still a few weeks of suffering. In the meantime I was told that my problem was likely work-related stress or something. And it ultimately turned out to have been ~~work-related stress~~ helicobacter pylori, a stomach bacterium for which there is a well-known treatment (taking two different antibiotics and a proton pump inhibitor) which worked quickly and completely.

Side note: Supposedly a significant chunk of the developing world has this bacterium. (Wikipedia: "In 2015, it was estimated that over 50% of the world's population had H. pylori in their upper gastrointestinal tracts[6] with this infection (or colonization) being more common in developing countries.") But if that's true, the vast majority of cases must be ... (read more)

6EGI3y

The cool thing about the "psychosomatic" diagnosis from the doctor's perspective is that it is a convenient, utterly non-disprovable "diagnosis" that offers closure to the doctor: "I found out what is wrong with the guy" instead of admitting failure: "Well, there is a problem but I don't know what it is." It also sends the patient on a long (month to years) therapy loop which offers plenty of time for the problem to resolve on it's own (which happens frequently). An additional perk is that any question or doubt of the patient can be chalked up to "being defensive / in denial" or "uncooperative" which is of course a symptom of the underlying psychopathology.

-1Marion Z.3y

Yes. My uncle, who is a doctor working in gastroenterology, was talking about basically the exact same topic last week. He said that they're highly confident a significant number of patients are having entirely or near-entirely psychosomatic illnesses, but it's incredibly difficult to identify when that is specifically happening, and unfortunately due to time and money constraints they have a tendency to just slap the label on difficult cases. We just do not know enough about the human body and how the brain affects it to be confident outside of extremely obvious cases. Even a lot of what we do know is being reexamined in the last two decades due to edge cases being discovered and lack of rigor in earlier testing.

1Portia2y

That label also just does not achieve anything. Sure, absolutely, poor mental health worsens physical health, and some debilitating condition have no apparent physical causes. But this doesn't make them hurt less. It doesn't provide a resolution. My episode beginings have a significant correlation with stressful events. I am perfectly aware of this. I would still, really really, like a way to interrupt the resulting destructive cascade other than going "well, it would have been better not to have been stressed".

[-]RedMan3y200

I had a severe health problem that I treated myself with broscience (doing research like a gymbro buying supplements to get hyooge) and some alt medicine that needed a clinic. I have pre and post treatment test results showing a problem and the problem in remission, with a degree of success that was unheard of, even in that particular clinic for that particular issue.

Had this conversation:

"So Dr, you're saying that either I have done something medicine believes to be impossible, or I was never sick"

"That's correct"

I looked into commercialization of my protocol, but unfortunately, I used mostly stuff available OTC, which would no longer be available OTC if it were determined to be 'a drug' by success in a RCT, and I would thus lose access.

So the process of getting good data is explicitly counterproductive to my goal of staying healthy.

[-]Elizabeth3y2519

Can I encourage you to write it up on a patient forum somewhere? Or I'd host it on my blog if you want. If luck matters this much I think it's worth recording every success, even if they rarely replicate.

4RedMan3y

Description of the thought process and general techniques used to generate an answer for myself puts those techniques at risk. Discussion of the specifics definitely my access at risk, and no I don't need a second opinion. I've thoroughly investigated disclosure, to the point of talking to industry VCs and CEOs about the challenges I'd hit spinning out a biotech startup to commercialize it. For a number of reasons, such a startup is a lame idea. Since I don't do social media, the possible exposure/engagement from simple disclosure isn't valuable to me. Instead, I'll offer an unrelated anecdote, if the structural/market issues that cause the following issue are fixed, I assert that my therapy will rapidly emerge from a more credible source with no effort on my part required, so work on this one instead: I met someone who was involved in an attempt to commercialize 'cell therapy for diabetes'. Someone else can go find the papers if they care. Basically, they sat in the lab and tried 'start with stem cells, convert into beta cells, implant in mouse; diabetes fixed' they then moved to 'peripheral blood cells, treat blood to turn into stem cells, treat again to turn into beta cells, inject in mouse, cells float through blood and park in the pancreas; diabetes fixed' At this point they said 'hey let's see about spinning this out for commercialization', and failed hard. I literally met people who were in the meetings. For market reasons, the project is simply not viable as a business. They talked to everyone who could listen, found no investors, gave up, and went back into the lab. Last I checked the state of the research was 'make gmo mouse that can't produce beta cells period, pull off blood, make stem cells, gene edit stem cells to fix missing gene, turn into beta cells, inject into mouse; diabetes fixed' Scientists are literally stunting on diabetes in the lab while people die because they can't afford insulin.

3RedMan1y

Thankfully, the Chinese seem to have figured out how to thread this needle: https://economictimes.indiatimes.com/industry/healthcare/biotech/healthcare/chinese-scientists-develop-cure-for-diabetes-insulin-patient-becomes-medicine-free-in-just-3-months/articleshow/110466659.cms?from=mdr Edit: paper here https://www.nature.com/articles/s41421-024-00662-3

1RedMan1y

https://www.nature.com/articles/d41586-024-03129-3 this is separate research. It looks like this will happen, and it will come from somewhere other than the west.

[-]romeostevensit3y191

My own frustrating story: had weird skin issues diagnosed as a variety of things for years and unsuccessfully treated with a variety of prescription and OTC remedies. During the pandemic I built up some spare capacity to overcome my usual maintenance helplessness around it and decided to throw literally every internet intervention for every possible diagnosis at it at the same time and then do binary search for specific things that worked. What wound up working? Hydrogen fucking peroxide. Something that many people say has no chance of working. It's been 2 years now and my symptoms are 80+% better. My belated hypothesis is that the underlying cause is something to do with skin ph and just regularly using more acidic washes and lotions (eg salicylic or uric acid) also seems to help and make the peroxide less necessary. This seems to have fallen into the hole of 'because there's an adjacent woo thing (ph is often the domain of BS fake medicine) doctors were incapable of thinking anything near it'.

[-]methree3y185

Wouldn't it be nice if there were a way to at least document random cures? Someone I know used to have problems doctors could not diagnose (lingua geographica was a symptom... one of those things nobody knows much about). Biopsies were made, blood levels were checked, a heroic efforts was put into trying to match the symptoms with something known. They disappeared all at once after a coloscopy, which requires, lo and behold, an intestinal cleansing that seriously disrupts the gut ecosystem. The moment the symptoms disappeared, doctors forgot about the issue. We learned that doctors are there to treat and have no time for research or curiosity. I feel an important bit of information is being left on the table, and it's not their fault, it's the system they are trapped in.

1Portia2y

Case study reporting is a thing doctors occasionally do, if a documented severe issue significantly resolved after an unconventional, novel cure that still entails a plausible working mechanism. But I think the issue here is often that doctors aren't sure what it was in the first place, and if it resolved spontaneously, which does happen. And I think a lot of patient solutions work indirectly. The patient will say "I quit gluten" or "I started yoga" or "I used a cream with x", but this entails a long sequence of other changes as well, which the patient may not necessarily be aware of, and which may have made the actual difference. And because a lot of these solutions are done by the patient, hence not blind, there are massive placebo effect distortions.

[-]Alex_Altair3y131

Loved this post. Both because I think this is a valuable set of reasoning heuristics, and because I read it in your voice, which made it feel something like a rationalist standup routine.

[-]Ben Pace3y125

“Luck-based medicine” is a phrase I will now be using.

[-]Stephen Bennett3y103

This reminds me of Scott Alexander's post on Pascalian Medicine: https://astralcodexten.substack.com/p/pascalian-medicine

The gist of that post is that if you take dozens-hundreds of medications for something, each of which is unlikely to work but carries basically no risk, the net effect of the medicines is in theory positive. I think this is probably false for acute illnesses, but might be true for chronic illnesses since the net damage of the illness is larger (barring consequences like death from acute illness) and the odds of a negative interaction between medications is lower when you're only taking a handful at a given time (again, so long as nothing kills you - I don't know how to account for that because I don't know how likely it is). As a result, while for each medication you take you might have negative expectations for that dose - a couple of random side effects with no effect on your condition - the information you gain means that the lifetime consequences of taking the dose are positive. I have no idea how to even guess at the frequency that a given medication will solve a given problem through pure luck, which is unfortunately the central number in this calculation.

I'm glad you found something that works for you!

[-]Elizabeth3y*101

Yeah, I would only make the case for this when a cure will be obvious. Medicine that insists its lack of effect is a sign you need more, ad-infinitum, is the worst- but I'd apply this to standard medicine too, and standard doctors take it worse than alt practitioners.

I also think Scott is mostly but not entirely right on the Algernon effect- that it's easier to hurt yourself than help. That is mostly true, but often chronic problems are caused by your normal homeostasis mechanisms getting caught in a bad equilibrium, and knocking yourself out of that equilibrium can be a step into an adaptive valley. But that can only possibly hold for things where there's a good equilibrium to be had, which I think is much more true for digestion and inflammation than for e.g. aging.

5DirectedEvolution3y

I just want to note the origin and context for "Algernon effect" for anyone who might stumble across this. Eliezer Yudkowsky based the term "Algernon's Law" on the SF book Flowers for Algernon and used it loosely to refer to the idea that evolution has probably found most of the simple ways to increase human intelligence in ways that benefit transmission of the genes involved. Then Gwern built on Eliezer's writing and others in his coverage of purported intelligence enhancing drugs and other practices. Scott cited Gwern in redefining Algernon's Law to mean "your body is already mostly optimal, so adding more things is unlikely to have large positive effects unless there’s some really good reason," and now it's being used here to mean "it's easier to hurt yourself than help." I haven't looked much into intelligence research, but the mainstream understanding of this idea in aging research is based on antagonistic pleiotropy and diminishing selection pressure with age. * Genes that cause disadvantages at later ages (which impact fewer organisms) may give a reproductive advantage at a younger age, and thereby achieve a net reproductive advantage. * The optimizing pressure of natural selection diminishes with age, particular in the post-reproductive part of the life cycle. This helps explain why people age, which is just another word for the development of health problems over time and the mortality risk they cause. It may also help explain evolutionary limits on intelligence. A gene that enhances intelligence, but lowers the chance of reproduction overall in the ancestral environment, will be selected against. For example, if a gene increases intelligence, but delays puberty, causing the organism to suffer more brushes with death in the wild, evolution may select it out of the gene pool - even though this particular form of evolutionary cost may not be one that we particularly care about, or that even impacts us very much in our modern, low-risk environment. None

[-]Dentin3y91

So much yes to this post. This tracks with about everything I've experienced so far. It also makes me appreciate even more the close friends I have in the medical profession; I know I can trust them to review ideas, think about them, theorize, and suggest other areas for research at a level that is appropriate for my skillset. In private, they admit to proposing numerous luck based treatments that panned out. Our hardware is complicated, and we have extremely limited monitoring and visibility on it. Doctors that aren't burned out and are curious know th... (read more)

[-]Adam Zerner3y96

The way I think about this is more "sometimes it makes sense to lower your standards for trying things". Ie here the upside is incredibly large: if trying the thing works, it means a significant improvement to quality of life. OTOH, the downside is relatively small: some non-crazy amount of money and/or weeks of unwanted side effects. With that as the upside/downside, I think an eg. 1% chance of something working is plenty.

Related: Pascalian Medicine

When I reviewed Vitamin D, I said I was about 75% sure it didn’t work against COVID. When I reviewed ivermec

... (read more)

[-]gwern3y*5715

The broader problem here is more one of predictive validity, and only accidentally or as a special-case 'you should try more things' (the value of that is doing it in a human, not the more-things per se). Appropriately, a new Scannell paper just came out, further discussing the logic of pipelines/screening/selection.

Why did they discover so many amazing drugs back in the 1930s-1950s? Why do we discover so few now? Why is the late Shulgin so influential? Well, it's because they were 'testing' all of the drug candidates (where the n is extremely, extremely small by contemporary standards of various kinds of in vitro or in silico screening) in humans. (The secret ingredient to both Soylent Green, useful COVID vaccine trials, and good drugs? It's humans. Always has been.)

The key point being any humans, not necessarily yourself. When you feed random wacky chemicals to humans and one of them tells you it did something funny, this has low predictive validity, as it is bare anecdote afflicted by all sorts of biases... but it still has way more predictive power than poking some mutant cells in a petri dish, and that's why you can look impressive and brute force thousands of those petri dish... (read more)

[-]yagudin3y81

I think it might be good to normalize "just try stuff until they fix your condition" as one of the treatment strategies. I guess it's a bit ironic that Dr. Spray-n-pray's indifference toward which pill worked and why seems so epistemically careless, while actually maybe being a correct way to orient towards success when you optimize for luck and have little reliable information.

[-]ChristianKl3y80

If the problem with proteins appears, it would be worth experimenting with whether you can replace protein requirements with consuming amino acids directly. If you consume them directly, there's no need for the stomach to break down proteins and you still get the nutritional value.

8Elizabeth3y

That does seem a good bit more likely to work than mediocre plant proteins. Interestingly the first and only medic to recommend it to me did so after the bospro started working, shortly after I shared that news. It ended up giving me digestive side effects that would have been worth working through before the miracle but pretty borderline right now.

[-]joey3y70

Really apprecitate you sharing your story. I read through most of the comments and it seems most of them are centered around diet/illness and finding miracle cures almost by accident. Has anyone here had mysterious musculoskeletal issues (nerve issues, chronic pain, etc. - I know those examples are vauge...) that no doctor was able to diagnose regardless of imaging but were able to fix through self-experimentation and trial and error?

[-]Shmi3y72

Wonder how much of this is due to variation in gut flora and finding something that your picky gut bacteria could be happy with. Certainly made a difference for me, accidentally, when I apparently picked up a different gut flora strain that changed things that have been persistent for decades.

8Elizabeth3y

I'm pretty sure gut biome renovations were somewhere between pointless and insufficient for me but agree that they should be very high on the list of things to try for many problems. I'd put them in luck based rather than model based only because we don't really know how to do them.

3Shmi3y

Yeah, figured you'd have tried, just that I didn't see you mentioning it, so brought it up.

1Nanda Ale3y

Gut biome was my first thought too as an explanation. As far as I can tell fixing gut biome with things you swallow is extremely difficult. Probably not impossible, but fragile as heck. The only thing that can somewhat reliably do it is a fecal transplant. Probably because you are moving in a whole ecosystem at once so the odd of it sustaining are higher. This post makes me want to try ketone esters because I do notice I am very productive when fasting, where I am in ketosis. But I only do it a day or two a month because I like food too much.

[-]sclmlw3y61

This points to the biggest contradiction for evidence-based medicine: it's often at odds with personalized medicine. We like to say that the plural of anecdote is not statistics, but we squirm a bit when asked to contemplate that the opposite is also true.

Yet our best tools for understanding how the body works require n>>1 for us to learn anything meaningful. You can't do statistics on a single event, be it an actual literal miracle or just an unexpected one-off effective treatment. How often do we directly observe the limits of our epistemic system, and then complain that reality isn't adjusting to the tools we prefer to use for measuring it?

[-]Elizabeth2y52Review for 2022 Review

Overall I'm delighted with this post. It gave me a quick encapsulation of an idea I now refer to a lot, and I've received many reports of it inspiring other people to run helpful tests.

A number of my specifics were wrong; it now looks like potatoes were irrelevant or at least insufficient for weight loss, and I missed the miracle of watermelon. I think this strengthens rather than weakens the core philosophical point of the post, although of course I'd rather have been right all along.

[-]Heron2y51Review for 2022 Review

This 'medical miracle' story engenders hope. To suffer a chronic illness and to have no tangible answers regarding (diagnosis for too many), treatment, or treatment that works, is disheartening, frustrating and draining. Here is a detailed account of one quest that, having exhausted the standard intellectual-medical approach, remarkably results in relief. This writer gets deeply into her specific experience, and the reminder that there is a case for exploring intuition, along with unlikely luck, is uplifting.

[-]Eir3y50

I'd like to thank you for sitting down and writing this. I've been thinking about this post post for a few days now and I can't say that I have anything worthwhile to add (yet at least), but I'd like you to know that on the other side of the screen this sparked a bigger curiosity of a doctor-in-training somewhere.

[-]Going Durden2y40

I have a somewhat similar story. I have been struggling with ADHD all my life, and only recently started using anti-ADHD medicines. Unfortunately, these gave me stomach issues and tremendous reflux, which was only tolerable if I took them in small doses...which in turn barely helped with my ADHD.

After testing pretty much every anti-ADHD drug with combination of every anti-reflux drug, I gave up, and tried my aunt's suggestion of Ashwaghandha. I was beyond skeptical, and only gave it a try to please a concerned relative. I was mentally prepared to anti-plac... (read more)

1Portia2y

There are a lot of studies on ash, it absolutely does work. https://examine.com/supplements/ashwagandha/ And I have myself experienced, and anecdotally heard, of massive improvements in areas not yet tested here. In light of how cheap, harmless and relatively healthy it is, I think it is a damn solid thing for people in this symptom cluster to try. It is the only thing that ever helped me with anxiety without making me more fatigued, for one, and also had far more significant effects for me.

[-]Elizabeth3y40

Someone PMed me reporting that this post led them to try Osteo Biflex (which contains Boswellia plus some other stuff) and it ~cured their lifelong knee pain.

[-]AnthonyC3y40

Yes, this sounds completely right. One unusually good doctor I had told me, "In the right patient, any drug can have any effect." It took me another four years to solve that particular problem, ten years in total, and I'm still concerned that when I see my new PCP (previous one retired) he might try to change my meds that've been working for 5 years.

Most doctors are too cautious, for whatever (often justified) reasons, to just try things. Most really don't know how to respect what patients know about themselves or to interact with an actually-intelligent p... (read more)

[-]DiamondSolstice2y35Review for 2022 Review

This post is really important as a lot of other materials on LessWrong (notably AI to Zombies) really berate the idea that trying out things that haven't been tested via the Scientific Method.
This post explains that some (especially health) conditions may go completely outside the scope of testable-via-scientific-method, and at some point turning to chance is a good idea, reminding us that intuition may be often wrong but it can work wonders when used as a last resort.
This is something to remember when trying to solve problems that don't seem to have one perfect mathematical solution (yet).

7habryka2y

This sounds to me like a deep misunderstanding of R:A-Z. The whole point of essays like Scientific Evidence, Legal Evidence, Rational Evidence is that there are tons of valid non-scientific forms of evidence. Posts like Einstein's Arrogance are explicitly about how you can come to high credence in propositions without much scientific evidence. "berating the idea of trying out things that haven't been tested via the Scientific Method" really sounds like a hilarious strawman of LessWrong, and if anything the opposite of what the culture of this site usually endorses (including the writing in R:A-Z).

4Elizabeth2y

I haven't checked but believe you that R:A-Z actively argues against that mistake. But DiamondSolstice is correct that there are strains of RCT-or-nothing and if-formal-science-doesn't-understand-it-it-doesn't-exist on the site. All the examples on this post are low karma, but I've seen them do better elsewhere.

[-]pinkgothic3y30

I flippantly summarise my version of this as "Prevent dementia, drink Coca Cola." My own story is that I was B12 deficient because of (at the end of a chain of causation) low gut motility.

I'd drunk Coca Cola like other people drink water for my teenage years and the caffeine in it was plenty to keep my gut motility up enough to not cause issues. Eventually I went off Coca Cola for all the usual sane health reasons (but never picked up coffee or some other caffeinated drink!), my gut bacteria spilled over into my small intestine (SIBO) and increased irritab... (read more)

1Portia2y

Just curious... why didn't you inject B12? At the point of nerve damage, that seems certainly more than warranted.

[-]carrots3y30

I had severe fibromyalgia/chronic fatigue syndrome for a couple of years, as diagnosed by two independent rheumatologists. It was so bad I couldn't sleep at night and I couldn't get out of bed during the day. Around that time, a few pilot studies came out of Spain with excellent results from CoQ10 supplementation. I had had little success with the regular prescriptions, so I decided to give CoQ10 a try. I felt much better after a week. Eventually I also started supplementing with other stuff known to be used by mitochondria, and 6 months later, I was back ... (read more)

1Portia2y

Nothing. I have literally walked into the office with several double-blind, peer-reviewed, large n studies printed out, the relevant sections carefully highlighted, to argue for the treatment I wanted, only for the doctor to repeat that this treatment does not work, like his conviction would somehow undo the data stating that it clearly bloody does. I take Q10 as well. Crucial supplement for me. There is this weird thing where some doctors believe that a substance that was not synthetically derived from scratch and created as a novel substance in a lab, but instead isolated from plants, or even delivered in the form of whole plants, can somehow not have any effect on your body, good or bad, as though such substances had an intrinsically different ineffective character. I have doctors go "no need to note the supplements, just the meds" and me telling them that they have significant interactions with other medications and blood values that they should really keep equally in mind does absolutely nothing. They'd want to know if you have taken aspirin, but not if you have taken willow bark. They group together proven cures with fucking homeopathy. It's the same mindset that leads to people poisoning themselves because "it is just herbs". "Just herbs" can heal you, or kill you.

[-]CronoDAS3y30

My own weird medical story: apparently I inherited my father's issues with heartburn and acid reflux. We share an unusual heartburn trigger: sugary drinks. I can have just about any artificially sweetened beverage under the sun, regardless of how acidic it is, and be perfectly fine, and I have no problem with tomato products or many other acidic foods that give other people heartburn, but just about anything that contains both water and a lot of sugar makes my chest hurt something fierce.

I've only found two exceptions: orange juice is pretty safe for me, and Diet Minute Maid Lemonade is almost as bad as the non-diet stuff. (Minute Maid Lemonade gives me heartburn basically 100% of the time.)

2Ben Pace3y

Hm, I also inherited my father's issues on this (though not the same triggers as you), and I was really hoping you were going to give me a random cure to try.

2CronoDAS3y

Well, although the triggers are unusual, I haven't had any need to resort to unusual treatments to keep the heartburn itself under control; avoiding my triggers is generally enough, and I use antacids when it isn't.

[-]Arshad Hosein3y20

Reading your experience with the medical world was hard for me. I have ARFID and have been down the same ringer for my entire life. I've come away from those experiences with a lot of the same conclusions about medical treatment and have also found myself into that try-a-new-doctor-every-couple-years loop. But in my case, I am now reasonably convinced it's psychosomatic. I'm happy you were able to find something that helped you!

[-]Dambi3y20

Condition: Dry Eye Syndrome (AKA: your eyes are dry and we don't know why)

Treatments that doctors did not recommend that work well for me:
Moisture-trapping night mask: https://www.eyeeco.com/eyeseals-40-hydrating-sleep-mask-charcoal-black.html?cat-id=

Moisture-trapping glasses: https://www.zienaeyewear.com/products/kai

If the cause is unknown, might as well treat the symptoms.

4Tim Freeman3y

I tend to have itchy eyes. An optometrist suggested "derm dry eye relief mask" by eyeeco. Heat it in the microwave 20 seconds or so and then lay down with this lump of warm stuff on your eyes for 10 minutes until it isn't warm anymore. Gently rub once afterward. This seems to help and I do it fairly reliably. The theory is that there are glands on your eyelids that secrete some magic substance that makes your eyes dry out slower. Those glands get clogged up if you stare at a computer screen and don't blink enough. Rubbing at them does a poor job of removing the cloggy stuff and the warm compress is better because the compress melts it. The optometrist claimed to be able to see the cloggy stuff. This theory predicts that I would have dry eyes if I didn't rub them when they itched. https://www.eyeeco.com/derm-warm-compress-mild-dry-eye-relief.html says they only sell to eye care professionals, but Google finds lots of equivalent competing products I could buy directly. I loathe that business model and I hope the competitors win. They sell it for use with moist compresses, but I don't add any moisture.

3Dambi3y

Yeah warm compresses are nice and I guess I recommend them as well, especially for relief when symptoms are severe. They are a bit of a hassle though so I recommend looking for other solutions. The best product for compress that I have found: https://www.thea-pharmaceuticals.co.uk/products/blephasteam It gently steams your eyes, so it makes them both warm and moist. I think I do recommend some form of moisture when you do warm compresses.

[-]kparker3y20

There really should be an aggregator for medical knowledge found on disease forums and posts of this kind (is there one?)

4Elizabeth3y

Crazymeds used to do this for psychiatric meds but no longer exists. I think it's hard to formalize because it's a lot of work, hard to capture the value of ethically, but very easy to capture the value of doing unethically.

1kparker3y

how so? forum members submit info voluntarily and anonymously natural experiments of your kind i.e. spontaneous resolution with some unexpected agent or lifestyle change - and other best practices based on n,000's of years living with a condition - there has to be value there for drug developers and clinicians. The work is authenticating claims and maybe matching people to scientists?

3Tim Freeman3y

In response to "how so?": If this catches on, you can sell a drug by infiltrating the forum and posting fake news of miracle cures under many different names. For schemes like this to work, you need some way of guessing who trusts whom. The spammers might claim to trust each other, and you never really know who the spammers are. The best you can hope for is for the real people to get good information from other real people they trust, and the spammers get garbage information from other spammers but that doesn't matter because they are spammers. I don't know of any implementations of this.

1Portia2y

Because at the point where people browse these forums, they are so desperate they will try literally anything, and are surrounded by people who feel the same, and a lot of the things being reported cannot possibly work, are extremely tied to very specific conditions, and possibly very dangerous. People will also select the meds they hear people report cures of in ways that emotionally resonate, not because there is good evidence it would transfer for their case, or at least be safe.

[-]Maxwell Peterson3y20

What form/brand/dose do you take the ketone esters in?

4Elizabeth3y

I use KE4. Now it's typically 5ml before bed and sometimes I forget that, but when I was doing longer intermittent fasting I'd do 10-15ml at night, 5-10 in the morning, and 5-15 before work outs. My ability to fast has increased, relative to what I did pre-ketone-esters, even when I don't take them or take less. I also quit soda when I started them and never restarted, even when I was taking almost no ketones. I think there might have been durable changes from it.

1Maxwell Peterson3y

Thanks!

[-]TekhneMakre3y20

Re/ ketone esters, is it plausible that they increase variance in productivity, but not mean productivity? That is, for some people (or for the same person at different times) they increase productivity and for some they decrease it, in a way that balances out in expectation?

5Elizabeth3y

Clearly there is high variance in response to ketone esters. If you're asking if in my study there was high variance averaging out to zero the answer is no, I checked for that specifically. I do suspect this is problem with a lot of other research though.

2TekhneMakre3y

Thanks. (I was asking both questions.)

[-]Portia2y10

I have so much fucking sympathy for this.

I suffer from a connected set of unusual and debilitating conditions that clearly, noone is capable of accurately diagnosing or making sense of. I understand aspects of them - inflammation makes them worse, for example, as do certain parts of my hormonal cycle, it also seems to be related to a genetic difference in how I respond to some nutrients and how my joints operate and a neurodivergence, and these aspects are reliable and helpful - but at the end of the day, noone knows why this is messing up my body so badly... (read more)

[-]Tim Freeman3y10

In response to: "I don’t understand why or how weight-loss-that-is-definitely-not-changes-in-water-retention comes in chunks. If you have an answer I’m quite curious."

I too have observed that this happens. I read somewhere that if you lose fat, it is a few cells losing all of the fat instead of many cells each losing a little bit of the fat. The empty fat cells fill with water and your weight stays approximately constant. After there are enough empty fat cells that have been empty long enough, some of them do apoptosis and you pee out the water and you lose weight then.

I don't remember where I read it.

3Elizabeth3y

I read a similar thing on Reddit repeating something the author's trainer said once. I have almost zero confidence in this explanation and it's also the best I've found

1Tim Freeman3y

Found a different, perhaps better explanation: salt intake leads to temporary weight gain from water. Restaurant food is salty. https://youtu.be/j314amPw4RQ 42:30

2Elizabeth3y

That explains noise but at the time I had almost no variation and then sudden drops. I was also consistently high salt, and I expect the salt effect has a ceiling.

[-]wgb3y10

The potato diet reminds me of a brilliant professor, John PJ Pinel, who had a pet theory he could never publish.

He believed that the most effective diet was to limit yourself to no more than seven ingredients. You can pick any seven. It might be potatoes, eggs, beef, carrots, lettuce, blueberries and tomatoes. Any seven, and maybe a Vitamin C supplement if you don't pick a citrus. You become so tired of each ingredient that you eat substantially less calories.

The interesting part was the theory that a limited diet allows... (read more)

4AnthonyC3y

I can see how that might help me eat less, but unless you chose the seven very carefully to be potentially nutritionally complete, sustaining that seems like a path to the kinds of deficiencies that made the agricultural revolution cost humans half a foot of height for most of the last ten millennia.

3carrots3y

I came to a similar conclusion about limited diet causing weight loss. I moved to a small remote town in Europe a few months ago and lost my excess weight with no effort, after having lived in large North American cities all my life. I shop mostly at a local mini grocery store that has limited stock, so my diet tends to be boring and my appetite small. As soon as I stock up from a supermarket with a variety of yummy unusual foods, I start gaining weight. I don't limit myself to 7 ingredients though. Rather, I eat the same thing for lunch everyday, and rotate through a handful of simple recipes for dinner. This also keeps my IBS-like symptoms under control, but I don't know if my GI is happy due to the ingredients themselves, the lower volume of food, or the fact that it isn't exposed to novel foods as often. Or a combination.

-1Marion Z.3y

The most effective diet for weight loss? Seems plausible. The most effective diet for being healthy, that sounds extremely unlikely. Even if your seven foods are nutritionally complete you're not likely to be eating them in the right balances. Intuitive body regulation sounds good there but in general, our bodies are actually not so good at guessing that kind of thing.

1Portia2y

No idea why you were downvoted. Humans have some correct intuitions on foods they need, but they are generally overwhelmed by wrong signals. My body certainly believes that it would profit from living off sugary fatty things, and that any multicoloured food has lots of nutrients, or that anything acidic is high in vitamins, which is why acidic, multicoloured candy is obviously a complete diet. I see why it thinks that and why that would help in a natural environment, but it really does not help with typical foods.

[-]rain8dome93y11

In my case it turned out to be manufactured food and gluten. This post is very similar to Quantifed Self movement.

Also please remember that side effects and drug interactions are a thing. Anything with a real effect can hurt you. I gave a very caveated suggestion of BosPro to someone on Twitter and it caused something akin to niacin flush in them. This is the same brand that does nothing to me but makes me better at digestion and uninterested in sugar.

What if the problem or the negative consequence of some intervention is hard to detect? I know... (read more)

[-]sarahcone3y10

This was a very interesting account and I think more of medicine falls into this category that we'd like to admit.

I'm interested in companies like Radicle Science that are a "private FDA" that run clinical-grade trials of natural medicines, vitamins, diet, exercise, and OTC medications on a variety of indications.

[-]Nathan Helm-Burger3y10

One of the ideas I'm excited for once we get further with the aligned AI stuff (sub-AGI level, but needs more careful handling than current narrow AI) is chatbots that people enjoy talking to which can collect and analyze anonymized data from lots of people. Hopefully this could push forwards personalized medicine significantly. That, plus cheaper better genetic screens and body biome genetic screens.

[-]Big Tony3y1-1

A lot of gut issues are a combination of:

Allergies to food. Diagnose and treat by cutting the most common offenders from your diet first: gluten, eggs, nuts, dairy. If there's no improvement and you're desperate, cut everything from your diet except rice and water, and add foods one-by-one until you isolate the culprit.
You may have an intolerance to food which isn't an allergy, e.g. coeliac disease. These can be diagnosed by a colonoscopy.
Allergies to other things in the environment that are causing issues, e.g. fragrances.
SIBO (small intestinal bacterial

... (read more)

[-]Elizabeth3y105

I mostly want to let 1000 flowers bloom on this, but activated charcoal is on my list of "only use if you have a very specific model of exactly what you are solving and what the costs are, with numbers". To the extent it works, it does not discriminate between toxins, nutrients, and medicines.

3Celarix3y

I am not sure what you mean by this. Do you mean this comment is great and worth the recommendation, or should be buried so that its corpse produces a thousand flowers? Genuinely unsure.

[-]Aiyen3y127

Normally that’s an idiom for “We’re not sure of the best approach here, so let everyone try whatever approach they like, and hopefully among a thousand methods, some will be useful”.

[-]habryka3y100

It sadly also was used by Mao, possibly to lull dissenters into a false sense of security, to then be cracked down upon:

During the campaign, differing views and solutions to national policy were encouraged based on the famous expression by Mao: "The policy of letting a hundred flowers bloom and a hundred schools of thought contend is designed to promote the flourishing of the arts and the progress of science."[3] The movement was in part a response to the demoralization of intellectuals, who felt estranged from the Communist Party.[4] After this brief period of liberalization, the crackdown continued through 1957 and 1959 as an Anti-Rightist campaign against those who were critical of the regime and its ideology. Citizens were rounded up in waves by the hundreds of thousands, publicly criticized, and condemned to prison camps for re-education through labor, or even execution.[5] The ideological crackdown re-imposed Maoist orthodoxy in public expression, and catalyzed the Anti-Rightist Movement.

3Elizabeth3y

Yeah I'd love to have a less loaded phrase for "encourage people to try a bunch of stuff" but Mao did a great job optimizing his.

1Celarix3y

Makes sense, thanks.

4birdy3y

woah. thanks a lot for mentioning SIBO, because somehow i was not aware this was a thing until you mentioned it, much less that sugar malabsorptions can cause this. i've had weird digestive issues for years now, and i always sort of blamed them on my fructose malabsorption (as did my parents and doctors), even though the timing and symptoms didn't really fit, so i guess i will get a test for SIBO now. it would be fitting to randomly find a solution to a health problem under a post that specifically says that sometimes blind luck fixes problems where actual medicine can't/won't.

3pinkgothic3y

Hmm, from the literature I've consumed so far, I had the impression that SIBO isn't actually that common, and it's just one possible (and not particularly wide-spread) reason for irritable bowel syndrome. That said, evidence is mounting that SIBO was absolutely [my problem](https://www.lesswrong.com/posts/fFY2HeC9i2Tx8FEnK/luck-based-medicine-my-resentful-story-of-becoming-a-medical?commentId=FXit9XoHTjevw6goD), so I have no anecdata leg to stand on. (Personally I'm gradually experimenting with the carbs my gut is okay with it, since it has such a strong dislike for most of them (especially starches, for some reason).) Thanks for the tip with the elm powder! (Edit: Erk, sorry, I can't seem to make that link work. This is what I get for not commenting here often!)

[-]Semanticprion3y01

Regarding "Fuck you every doctor who told me my digestive problems were in my head": psychosomatic illnesses are a real thing, and sometimes the solution to an apparently physical problem really is psychiatric. BUT if a non-psychiatrist physician believes this is what's going on, THEY SHOULD REFER THE PATIENT TO A PSYCHIATRIST, not dismiss them. Imagine someone coming to a primary care doc with unstable angina and the doc said, "Ah, it's in your chest, whaddaya gonna do" without referring to a cardiologist.

[-]Daniel V3y-10

He guessed I had an allergic reaction and threw 5 different antihistamines

Not so much dumb luck after all! Allergic reactions often cause inflammation, and it's the inflammation that is uncomfortable. Sure, it's not very controlled (could have suggested one, then another, then another, until you got to Boswellia, preferably in order of prior belief for each more-specific hypothesis), and other things could cause inflammation, but it's not completely luck either. (Though this did not detract from my enjoyment of the post!)

Some quick Googling says,

Curr

... (read more)

[-]Purged Deviator3y-3-1

weight-loss-that-is-definitely-not-changes-in-water-retention comes in chunks

Source for my answer: for the last 10 months, I have fasted regularly, with various fasts from 16 hours to 7 days, with & without vitamins, including water fasts, electrolyte fasts, and dry fasts. During this time, I have weighed myself multiple times per day. [I have lost >100 lbs doing this, but that's not important right now.]

How hydrated you are at any given time is a confounding variable whenever you weigh yourself. My body can hold plus or minus nearly a gallon o... (read more)

[+][comment deleted]3y-70

LESSWRONG
LW

LESSWRONG
LW

495

Luck based medicine: my resentful story of becoming a medical miracle

495

495

Part 1

Preface to the Preface

Standard Preface

Other Evidence

Moral of the story: when intellect fails, try luck guided by intuition

Parting shots

For potential clients in particular