Every single person I know who died from cancer young went down this route, from trying weird cures to going and seeing John of God in Brazil. Zero cured or delayed the cancer. All delayed acceptance and GREATLY regretted wasting that time and wishing they had had more time in the acceptance phase not the 'this can't be real' 'I can't die' 'There has to be something' denial.
This can and does hurt them, and is cruel. If they want to inflict in upon themselves, that is one thing. But to do it because OP has had enough losing friends is selfish. You will never stop losing friends to death, in fact, it will only accelerate from here on out. It will never get easy. In fact, it compounds as more and more joy/light/goodness leaves the world and those you turned to for support are gone. It's part of the deal they made when our parents volunteered us for this existence.
My own view is not that self-experimentation is an appropriate, let alone likely efficacious, substitute for reconciliation to the idea of one's death. I certainly don't endorse interference in others' treatment, however well-intentioned. If you want to say: "you shouldn't treat your terminal illness like a science fair project unless you possess extreme sang froid and are precommitted to the acceptance of your death", I'd find that totally reasonable.
But my own view is rather that institutional epistemology is somewhat overrated, and self-experimentation somewhat underrated, relative to the conventional wisdom. (Though some people go too far in this direction.) This leads to general overconfidence in epistemic efficient market hypothesis arguments ("if a protocol were worthwhile, someone would have found it already") and underconfidence in the value of crowd-sourcing trying a bunch of stuff and writing it down. This view was principally informed by developing cancer drugs for a living and coming to appreciate that it's really hard, your knowledge of what's going on during a clinical trial is highly abstracted, and you can't be everywhere at once. It was secondarily informed by watching people do bro science on certain important questions and making interesting progress in large part because they could move much faster than academic or corporate research.
If we recast the point of contention as: "what is the largest effect size that could be found by an institution outside of academia or industry?", my position is that it's plausibly non-zero.
I'm sorry for your friends and I hope they found peace.
As a pure numbers game, I’d find it more surprising if “broscience” never found a result:
- a lot of terminal patients are prone to experimenting
- their overall number probably eclipses the total number of trial patients in a given year by at least one order of magnitude and I’d believe two or three
- they don’t have institutional barriers to what they can try, eg, they’ll fund non-patentable treatments
- a lot of their approaches are taking things from published papers and trying to recreate similar effects (eg, calorie control [1])
That they’ve stumbled across at least one treatment that solved at least one case for at least one patient seems likely. Isolating that from incorrect null results is where the epistemological struggle is. And there’s a good chance that it won’t help you with your particular case.
But what’s the harm in trying? — you’re probably going to die anyway.
When you try someone else's "broscience", you're not really experimenting with the unknown, so it's unlikely you're going to stumble into a "result". They know it doesn't work. If it did work, they'd have patented it and licensed it to Merck or Pfizer.
I think your argument is that developing cancer treatments is really hard and the clinical trial process has problems. I can believe it. Do you think the mainstream epistemological process produces more false negatives or more false positives? What's the proportion of cases where a chemist finds a compound that really works, but the process incorrectly rules it out, vs cases where something that doesn't really do much still comes out the other end as a marketable drug?
I'm not in the industry, so what do I know? But I kind of doubt there are actual, effective treatments just sitting there unmonetized in Merck's basement library because the company is slow and the process makes things difficult. Especially the kinds of things that get mentioned in HN threads that don't require any chemistry research and are pretty straightforward to test, like fasting, meditation and yoga.
TBC I have no reason to believe that Big Pharma is deliberately withholding effective treatments it knows about so much as making (understandable) decisions not to investigate them in the first place. The total addressable market of a potential therapy is a central consideration for target selection-- you're roughly trying to maximize patient population times marginal willingness to pay over the standard of care. I don't think there's anything nefarious about this btw, you have to do what makes the greatest difference.
But that does mean that if you have a hyper-specific rare disease, the person who is willing to spend the most time thinking about it may very well be you. Or if you're living far from a major hospital and getting treated by a generalist with a heavy case load, you might be the most invested person within 500 miles of you, which is almost the same thing but better because you can still read the literature.
I wouldn't encourage the average patient to try doing rational drug design in their garage, but one could ask: "are there things that look promising that are still a year out from clinical trials?" and think about how to DIY some approximation to that.
At the extreme end of this spectrum, you have people like Beata Halassy who did just that, treating her own cancer with DIY viral therapy (https://www.nature.com/articles/d41586-024-03647-0, and please do note all the finger-wagging about how terrible and irresponsible of her it was to save her own life). Why did she have to do that instead of just going to a doctor? Because the route to the clinic is too slow. Why is the route to the clinic too slow? Because FDA has the institutional incentives that it's better that ten thousand patients die for lack of a cure than one die of quackery. Why's that? Because the FDA gets penalized for bad treatments but not for treatments that don't exist. But I say that dying of lack of a cure is not much better than dying of quackery, so we might as well minimize total deaths.
At the somewhat less extreme end, you have ideas like trying to treat GBM with Zika virus, which has a sketch of a mechanistic explanation and some support in animal models, but afaict no clinical trials yet (https://clinicaltrials.gov/search?cond=GBM&intr=Zika). Is this a cure for GBM? Complete BS? Something in between? I have no idea, which is kind of my point-- no one knows yet. Regulators probably aren't that jazzed about signing off on giving neurotropic viruses to immunocompromised patients without a lot of prior evidence that will give them cover for making that call if something goes wrong (which it totally might!). But an individual patient might look at that question with a different set of incentives.
Or consider psychiatric treatment of various mental illnesses. The best and most honest psychs I know will tell you that, past a certain point, responsiveness to a given drug is idiosyncratic and the state of the art is really just "try a bunch of stuff until something works", without much concern for hypotheses about underlying mechanisms. Is that rational medicine or bro science? Something in between, I think. And is it possible that there are behavioral protocols that help one particular schizophrenia patient to manage their quality of life better than the standard of care as defined for the entire population? Given that no one really agrees about what schizophrenia even is, this seems not totally impossible.
And then at the other end of the spectrum you basically have lifestyle interventions, as you note. Almost everyone agrees that certain of these are good for you, but some are really difficult to implement and adhere to. It seems reasonable to self-experiment with those things.
If this was the case there would be facilities in remote countries with lax law making billions off of curing cancer. While there are indeed facilities in countries with lax laws doing questionable medicine, none are known for actually working. Instead they are known for preying on people. The fact that successful facilities don't exist indicates to me that your hypothesis is incorrect.
As I’ve pointed out elsewhere, I don’t think curing cancer is the bar for sober self-experimentation. “Noticeable amelioration of disease” is.
There is substantial regulatory burden that prevents US-based companies from doing what you suggest. In fact there is regulatory burden that prevents things that 99% of American voters would prefer, like having reciprocity agreements that allow you to take any drug that had already been approved in Europe. It’s instructive to look at the case of Halassy and notice how much reflexive resistance there is to even the most self-evidently good ideas.
To make things concrete, here’s a practical idea: write down everything you eat while on a medication and rate your subjective well being everyday. Look for patterns. If anything jumps out at you, try eliminating it and seeing if your subjective wellbeing improves. Is this method fool-proof and without failure modes? Of course not. Is the prior probability that you’re eating at least one thing that’s unknowingly contraindicated for your condition / treatment pair very low? Also no.
My model is that the rate limiting factor for spotting unknown contraindications mostly just individual attention / discipline, so EMH arguments are unresponsive to this factor.
Consider the following argument: if obesity were such a big health problem, why is everyone fat? Mostly because losing weight is really hard, which I sympathize with but don’t take as an indication that it’s impossible to do anything about it.
In fact we don’t even have to bring disease into it at all. I’m sure that if i did a systematic elimination diet i would find one or two common foods that really didn’t agree with me, which i could make noticeable differences in QoL by avoiding. Why don’t I? Mostly because I’m just too lazy, and I’m fine with copping to that. But i don’t think it’s crazy for someone to choose otherwise, especially if they had a higher upside.
True. But for the highest-grade nasties, where median life expectancy is unfortunately short and progression near-universal, you don't need much signal to get above the noise.
Anyone surviving more than a handful of years with something like that is an outlier such as to merit a full work-back, and at that point it's no longer bro science.
I think that's partly a survivor (the disease surviving, not the patient) bias effect.
Things that could be solved by random discoveries are no longer considered the highest-grade nasties. There were a lot more intractably fatal conditions in 1870 than there are today.
So the likelihood of there being answers that could have been randomly discovered by medics with 1870 or 1920 levels of knowledge is tiny. At the same time, the sum of human knowledge has expanded so rapidly since then, it's not impossible for stuff to get missed.
Apparently you know many people that have died from cancer young, and this qualifies you to know how a terminally ill person should process that emotion.
You have zero qualification. How dare you imply that you know best for someone going through this.
Hopefully no one reading this is ever in that situation. But I'll defer to the individual who's facing the death count down to process it in their own way.
Your tone policing in offensive. Psychological and quality of life in end of life situations are valid and necessary considerations to include when talking about life threatening conditions.
I said nothing about how a terminally ill person should process anything. I stated what I have found to provide the best outcome when a person close to you has a terminal disease. If OP said 'my friend asked me to research...' I would have given a different response/no response.
But when OP makes it look like this is an initiative OP took upon themselves, for themselves, because they have lost too many friends, then yeah, I'm going to highlight that might not be the best possible position to come from if OP wants the best outcome for their friend. My response about outcomes it totally valid since OP asked for help with outcomes.
This can and does hurt them, and is cruel. If they want to inflict in upon themselves, that is one thing. But to do it because OP has had enough losing friends is selfish. You will never stop losing friends to death, in fact, it will only accelerate from here on out. It will never get easy. In fact, it compounds as more and more joy/light/goodness leaves the world and those you turned to for support are gone. It's part of the deal they made when our parents volunteered us for this existence.