Luck based medicine: my resentful story of becoming a medical miracle
lesswrong.com
lesswrong.com
This made sense once I realized doctors know much less about the human body then they pretend to. Not only is our understanding of physical health far less "advanced" than advertised, but the system is far too complex for any one doctor to comprehend. Medicine is far from the only field in which this is the case.
Computers have become too complex for any one engineer to understand in full. Leadership has always had this quality. These are fairly obvious, but I wonder if most (all?) domains of life share this. Consider the recent discovery that the varnish used on Stradivarius violins gave them their amazing sound. Hundreds of years ago, this was almost certainly discovered through luck or intuition.
In contrast to the author, I find joy in this. Not only does it reveal boundless territory waiting to be explored and discovered, but it gives meaning and purpose to being human since no technology comes close, or perhaps will ever come close, to matching the extraordinary abilities of human intuition.
> This made sense once I realized doctors know much less about the human body then they pretend to.
I find myself agreeing with this so strongly. Couldn't have put it better myself.
Further - I've suffered way worse harm relying on the medical system than the disease (mycoplasma genitalium infection) I had to arduously & painstakingly diagnose on my own (and even treatment was botched by my doctor, I had to insist that I be treated with the CDC recommendation as opposed to his outdated prescription).
I don't mean to say they're useless, far from it. In acute care they're the best we've got and they often perform miracles, but for chronic issues (by definition something medicine doesn't have the capability to fix) it's so often a horrible situation.
And there's such a strong force to silence criticism of the system.
This is partly because public discourse is incapable of nuance and because often those criticizing are in fact much much worse than the system being criticized.
In the early years of the internet, we naively believed the interconnectedness of the internet would solve such things. Good will, honesty, and, proper information hygiene do not scale.
What does that say about "democracy" and collectivist politics more broadly?
Meanwhile, information hygiene is threat to democracy. A democracy is a careful balance, which in turn mitigates the worst outcomes of all alternatives.
As for the second part of your question, you will have to be more specific.
As the author had a serious and mysterious chronic condition, I can understand her take on this.
I've been lucky in that two of my doctors treated my rare conditions as mysteries, puzzles to be solved. Not much like House MD, which requires an explicit explanation. But more like "Hmmm. That didn't work. Let's try this other thing I've been reading about." Instead of summarily dismissing my experience because there was not "hit" in their knowledge base.
FWIW, in the USA, at least, the combo of fee-for-service and compensation model discourages sleuthing. (But does encourage more testing, ironically.) IMHO.
My current goal in life is to save up enough that I can afford paying a private doctor to treat my chronic condition in exactly this way. Possibly in India or another place where it won't run into many hundreds of thousands of dollars. I still have no idea how I'm going to try and find one but your description has put it into words so aptly that I'm going to take it a8nnd run with it.
My condition has left me unable to use any kind of keyboard-like device except for MacBooks and any kind of mouse-like device with physical buttons (i.e. not trackpad). Using anything else hurts both my finger joints and wrist to the point that within minutes I need to stop using them. Yet with all the doctors I've seen here it's the same; 1. Do the scans and test 2. "Well we can see some inflammation in the wrist, you need to rest more. Here, we'll prescribe some NSAIDs.". Completely ignoring the absurdity of the suggestions given that it happens within minutes and having tried resetting things completely by disavowing keyboards/mouses for a few months to little effect when resuming usage.
> FWIW, in the USA, at least, the combo of fee-for-service and compensation model discourages sleuthing. (But does encourage more testing, ironically.) IMHO.
While that may be the case, I think you're still more likely to find a doctor willing to sleuth in the US than anywhere else. The cultural factor having an even bigger impact than the profit model. Having spent many years in both East-Asia and Western-Europe, each of them have cultural factors working very strongly against it even if their compensation models should be more favorable. For the former, a big aversion against debate/answer searching in general and particularly questioning an authority while doctors are as big as an authority as you can get, ranked at the very top of the hierarchy. For the latter, a big distrust of patients and high degree of expected "self-reliance".
This last part, along with (from a comment elsewhere)
> [...] many doctors being terrible at statistics and failure to properly use statistics means they constantly overlook otherwise obvious causes.
means this area should be the one with dozens of AI startups chomping at the bit to improve the situation. I.e. giving suggestions for possible causes of rare medical issues. Because the existing human performance in these situations is so incredibly low mostly due to the exact things that ML models excel at, it should be very easy to at least to improve on that. If it's not happening because of US regulations against "medical advice", then base it in India or wherever it'll work. I guess that makes venture funding and profitability more difficult but if you're looking to do good, this avenue has unfathomably more potential for massive positive impact than e.g. taking a job at a traditional existing non-profit. I reckon it should also be very possible to get funding from exactly such non-profits, especially those aimed at rare medical conditions. Effective altruism-oriented groups should also be interested.
If the issue is the unobtainability of data due to privacy laws, even a ChatGPT-like model trained purely on Google Scholar, medical literature and other relevant sources has enormous potential and again should readily outperform the baseline.
It becomes less comical when you find yourself needing to convey to a buffoon who thinks they're the beez kneez that they're full of shit and should be looking stuff up instead of guessing.
Speaking as a former doctor who's had way too many encounters of the sort, both before and since leaving medicine.
Doctors, and by extension much of medicine, are terrible at statistics and the failure to properly use statistics means they constantly overlook otherwise obvious causes. Quite often you’re better off with Dr. Google which implicitly by the nature of the algorithm does use some statistics.
There is a rich medical tradition of using frankincense for myriad treatments.
The author very narrowly cites BosPro,[1] which is a gum extract of Boswellia serrata, or Indian frankincense. Specifically, it claims to have high levels of AKBA (Acetyl-11-Keto-β-Boswellic Acid),[2] an antioxidant with vascular remodeling properties.[3]
It probably came up in Dr. Spray-n-pray's treatments because of studies that suggested AKBA could bind to SARS-CoV-2 proteins, but were inconclusive on whether they were effective treatments.[4]
The author dismisses the inspecific "inflammation" response from that doctor, but considering that the inflammations AKBA seems to often be found effective as a potential treatment are often related to either severe cardiac issues or neurological inflammation - including MS - I'm naively, but more than a little, concerned for the author.
The doctors might have understandably been focused on the author's digestive/GI health, but as noted in the article the brain/GI connection goes very deep. Early-onset symptoms of MS are often digestive in nature.[5]
1: https://www.euromedicausa.com/products/bospro/
2: https://pubchem.ncbi.nlm.nih.gov/compound/Acetyl-11-keto-bet...
3: https://www.nature.com/articles/srep39809
4: https://onlinelibrary.wiley.com/doi/10.1002/ardp.202100160
5: https://www.ms.pitt.edu/symptoms/stomach-and-intestinal-issu...
MS is triggered by B-cell
Boswellic acid derivatives in true frankincense and Indian frankincense are both strongly medicinal.
The renin-angiotensin-aldosterone system, vasopressive intenstinal peptide-vasopressin regulatory axis, pinneal-thymic-bone marrow system, hypothalamic-pituitary system, and more are all significantly influenced by boswellia derivatives.
Coming from a sciencey computer nerd background I have to say, plants are incredible. For one thing, they are very intelligent and adaptable. They have senses we don't fully understand. Together with fungi and microbes in soil they form LANs that administer large areas of the Earth and adjust environmental conditions to suit themselves. Seriously, look at living things as nanotechnology and you realize we are in (and of) a kind of living fractal cathedral of information and life.
Anyway, before I get too lyrical, my point is that plants produce myriad chemical substances that have effects on your metabolism. We are all familiar (if only by reputation) with the heavy hitters: Coffee, Coca, Cacao, Cannabis, (lotta C's) Tobacco, etc. But there are thousands of species of plants that produce innumerable substances that are essentially medicines: chemicals that have a stereotypical effect on metabolism.
It's entirely reasonable and unsurprising that some plant, such as Boswellia sacra, the sap of which is the source of frankincense, could have such an effect.
A well-stocked garden/forest is a medicine cabinet.
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As the author points out, it behooves us to "do science to it", eh?
When FitBit-style wearable medical monitoring devices become commonplace we're going to have a wealth of data to correlate, at least in theory.
Quite an interesting article.
Psychiatrists, for lack of useful lab tests, must prescribe by trial and error. They have the additional problem that they use the same name for a variety of different illnesses. It would be like your mechanic says "busted" for all different failures, and just tries replacing random parts until one helps.
That being said, 33% of doctors I've dealt with follow a simple heuristic[1], which makes paying for those visits so much more annoying. But it is worth it when I find a specialist that legitimately ends up helping.
[1]: https://astralcodexten.substack.com/p/heuristics-that-almost...
Best to avoid doctors and make educated self-tests after internet/Google Scholar search.
This entire post is a good example of how post-facto reasoning can take over in the space of anecdotal medical changes. The author doesn’t even seem to realize that Boswelia is a notable anti-microbial, which is a nontrivial factor when considering gut issues and potential microbiome changes. Several supplements are potent antimicrobials against the microbiome, some on par with prescription antibiotics. I wouldn’t be surprised if the combination of 5 supplements the doctor prescribed simply nuked their microbiome from orbit and it happened to come back in a somewhat healthier combination. There is precedent for this in controlled studies, but results are very mixed.
The SlimeTimeMoldTime blog they (rightly) criticize is another example of post-facto reasoning taking over at the intersection between “rationality blogging” and medicine: We’ve known for a long time that monotonous diets like potato diets result in weight loss. It’s not magic, it’s just that potatoes are boring and bland and you’re going to eat less food if much of your diet is potatoes. Yet the rationalist community has been doing mental backflips to try to come up with a more complicated explanation for why this might be the case.
The author isn’t explicit, but it seems like the pills were prescribed over a period of time, possible separately, possibly overlapping. The author describes using a spreadsheet up correlate which pills coincided with what dietary changes and identifying it that way. So it wasn’t an assumption, but it wasn’t definite either until it was properly tested.
> The author doesn’t even seem to realize that Boswelia is a notable anti-microbial
The author explains that they researched Boswelia and it’s mechanisms of action, so while they don’t explain everything they know about it in the article, assuming they don’t know basic facts about it seems unreasonable.
The fact that the symptoms returned after they stopped taking the supplements indicates the solution wasn't a one-time microbiome adjustment.
> Back in May the timing of the miracle suggested that one of Dr. Spray-n-pray’s pills was responsible. This was more or less confirmed when I weaned off the various pills and the subtle grossness around food started to return. I could also feel growing sugar cravings. So it was important to figure out what the miracle pill was and get back on it immediately.
> I made a spreadsheet tracking the changes as best I could – when my diet changed (using grocery order data), when I’d started and stopped which pills.