In my experience, many people have a quasi-religious belief in the capability of modern medicine to perform what would otherwise be called a miracle. This belief is typically held without any evidence whatsoever.

In reality, there are a plethora of conditions, some very common and serious, that medicine simply has no idea how to treat. The set of completely treatable / curable conditions is much much much smaller than the set of all possible diseases, yet people act as if it's the opposite. This is why things like 'evidence based' medicine is so dangerous -- we don't have evidence for the vast majority of impactful conditions, simply ignoring patients with these conditions is not a workable solution.

Also, it’s not just patients that think this way. (Or, at least, if the clinicians know, they aren’t saying much to their patients.)

I’ve had docs gush about amazing wonder drugs, then I go and read the actual Phase 3 trial data on the patient information sheet and it has a 15% response (not remission) rate. I’ve been told I’m being given a “gold standard” treatment—but not that the “gold standard” response rate is actually only about 33%, and in another ~33% of cases it makes things worse.

I’ve had doctors refer me for surgery, tell me about how amazing the surgeon is, what a great job they’ll do, that if their own kids were sick they’d send them to this person. When I ask for hard data on the surgeon’s actual success rate for this type of surgery, well, they don’t track that—but look, just trust me, the guy’s realllyyy good.

Out of dozens of specialists I’ve seen over the years, I’ve only had one ever explicitly acknowledge that, yes, I had a real problem, but modern medicine just was not advanced enough yet to identify the cause, so they’re just kind of winging it. For the rest, there are “many new options”, “great responses”, “positive outcomes”, “extremely effective”—or there’s nothing wrong with you, it’s all in your head, and the princess is in another castle.

For good reason. Tracking of clinical outcomes is the wet dream of insurance companies. It's very toxic to the healthcare system, because it pushes practitioners to focus on easy cases where a good outcome is expected and causes major inequalities in access to healthcare.

I'm not saying the present situation is ideal, but for the system as a whole in its current form, tracking clinical outcomes is a very bad idea.

Many times, things that a patient wants and would make a patient happy are medically contraindicated and lead to worse outcomes, yet there's immense pressure on clinicians to maintain patient satisfaction metrics.

I'm not disagreeing with you at all; more suggesting that we're currently relying on metrics that are even more perilous than actual clinical outcomes.

It's complete insanity to even being comparing treatments that are so different.

Edit: Follow-up question: notwithstanding the dysfunction of congress and the ability of companies to find loopholes, and assuming no universal health care to eliminate the role of insurers, surely a solution would be to prohibit the use of this information in the same way that ACA prohibits the use of pre-existing conditions to deny coverage?

Different surgeons in different areas treat different kinds of patients. It's hard to accurately measure anything in a meaningful way that should influence decision making. To use your example, surgeon Z may also perform procedure Y but has (N-5)% of patients reporting relief and (M+5)% of patients reporting post-op complications. However, surgeon Z works at a community hospital and treats a poorer patient population with more co-morbidities. Can you really say if surgeon X is better than surgeon Z?

And it shows up all the time in things like the Consumer Reports hospital rankings and the like, where hospitals with particularly uncomplicated patient populations come off looking like they're the best hospitals.

Doctor's historical success rate exceeds expected success rate on average => Good (or lucky) doctor.

Genetics is oversimplified to non-physicians. It's cool that we can diagnose and predict the likelihood of getting Huntington's disease using our knowledge of genetics, but extremely few diseases are this simple. There are huge swaths of the human genome that we don't understand but are likely playing some important role in the regulation of other genes and diseases. We are nowhere close to being able to look at a patient's genome to predict anything useful outside of a handful of exceptions.

Patient histories are honestly often garbage—I say that as a physician. I look through dozens of patients' charts every day, and there are constantly errors, incomplete documentation, and fragmented records across multiple institutions. Just last week I read a chart for a patient who had a documented hysterectomy from years ago. The brand new CT scan I saw showed a perfectly normal uterus. Once something goes in a patient's history it's nearly impossible to correct or remove. If some doctor from ages ago said the patient is allergic to medication X, but the patient denies it, what do I do? Usually, we opt to leave the allergy listed out of fear of the consequences if the patient is wrong.

I had one doc I had only met remotely who entered a height into my online, shared record that was several inches shorter than I was...back when I was an 11-year-old child. It's been 25 years since I was that short.

I pressed them that they could at least have asked me how tall I am, or even consulted the previous entries by other doctors in their same system.

There wasn't even an attempt at an excuse. It was plain, simple negligence.

That doctor had also been insisting I needed to let him do an exploratory surgery, despite never even having had me come to the office in person, so I noped right out of there and started telling that story to everyone I thought might consider seeing him.

All of this talk about how "hard" the statistical analysis is, is strange to me. Maybe "advanced" would be a better term? If you get a patient with a contradictory medical history that somehow also contradicts what they are telling you, simply adjust your expected chance of success appropriately (to zero perhaps). In that extreme case, if you get a good outcome, congrats you got lucky. If you don't, it should have 0 impact on how you are evaluated as a doctor.

Institutions face severe penalties for wrongfully sharing patient data, so most opt to just not share any data. Any research that is performed is done internally on local populations with de-identified data sets. A few brave institutions go well out of their way to create and share de-identified data sets publically, but these data sets still undersample the general population. This is a critical problem because certain diseases are highly prevalent in certain regions (e.g., Lyme disease in New England) but unheard of in other regions (e.g., Lyme disease in Colorado). If your ML model is trained on data largely from New England, it's going to diagnose a patient with the classic "target-shaped" rash with Lyme disease even if the patient is from Colorado (high false positive rate). If the model is trained on data from Colorado, it will underdiagnose Lyme disease in patients from New England (high false negative rate). The only way I know to overcome this problem is to create even larger data sets, but this just isn't possible with data privacy laws.

My understanding is that high dimensionality in the domain is exactly where ML excels (so add location as an input), and that is exactly what a medical diagnosis involves. Perhaps the legislation will get there one day.

https://inews.co.uk/opinion/nhs-data-shared-third-parties-we...

Anyway, its out there now.. so watch this space, I guess!

Most big medical co do a lot of data science (Kaiser and others). Very efficient from a managerial pov. Totally useless, medically speaking.

In that I have several CDC funded projects using machine learning in medical analysis and outcome prediction.

Even on extremely well curated data sets this is a fairly hard problem.

Read “The Alignment Problem”, a very good just above pop sci level book about machine learning. They have one example where ML determined seniors with COPD were at reduced risk from pneumonia, and obviously non-sensical result. Patients with COPD wound up in the hospital at a lower rate than average because doctors know they need careful attention right away.

I’m reluctantly pessimistic about humanity’s near-term capability to appropriately weight input from technology as imperfect but inscrutable as current ml.

This is a little like programmers calling the programming language they invented and write in every day garbage. Separate from patient-reported histories, you medical doctors are the ones documenting these histories and hold the decision making power for how it’s done!

Your first sentence would be the equivalent of the inventor of patient history data keeping calling patient history keeping a garbage tool. Which is actually something that would be totally OK to do and say if suffixed with "and unfortunately so far nobody has come up with a better tool and it's not for lack of trying".

I'm assuming you didn't mean "you medical doctors" in the sense it's easy to read in. In any case, what you are doing here is telling one doctor that he is bad at the medical history writing and reading job when in fact he is the one telling you how he is able to spot other doctor's mistakes and trying to correct them. This is like telling one developer that he's bad at his job, that "you developers are the ones writing bad code and hold the decision making power for how it's done" when that developer is actually someone that tries to make things better both through his own maintainably written code (medical histories) and helping others in code reviews to make their code better and not let bad code get into Prod (finding errors in existing medical histories and trying to correct them).

That can be very discouraging, being thrown in with the bad apples. And even good apples can have a bad day or misunderstand something. But I guess you are perfect and have never produced a bug in your life.

There is certainly noise in healthcare data especially when patient-reported, but is it noise to say that a patient having X procedure later does or doesn’t have serious complications? Analyzes of medical care and their consequences can be evaluated and it’s not noise

And big healthcare data has lagged, partially because privacy concerns trump sharing. There are companies selling anonymized medical records for basically every American now though. Big data is coming

Big _bad_ data... Let's see how we fare in 5y, then. My prediction as a clinician with a special interest in stats: close to zero medical progress. But insurance priced by a ML algorithm, and much greater efficiency in coverage and claim denials.

https://www.healthcare.gov/how-plans-set-your-premiums/

The more likely use case for ML is detecting insurance fraud patterns.

I think that's covered under "much greater efficiency in coverage and claim denials."

The codes we do have are mostly CPT4 and ICD-10 for billing purposes. Those are generally pretty accurate, but not detailed enough to reliably assess whether one surgeon is better than another at a particular procedure.

Isn't that already the case, even without formal tracking of outcomes?

To your counter-example, maybe the metrics I described aren’t good enough and should integrate some disease severity criteria or site-weighting or comorbidity score (although as one continues to subdivide the population this way eventually you end up with n=1 and the results are useless again) but like, surely we should be trying to measure something other than the good feels and word-of-mouth of people who have to work with each other?

It physically hurts my brain when I think about how we measure the dumbest shit in software engineering, like which shade of blue to use to improve clickthroughs[0], but when it comes to even attempting quantification of activities which are literally life or death, sorry, too hard, can’t do it. Surgeons will refuse to do hard procedures, insurers will destroy careers, EMRs are full of bad data (so what is the point of the bloody records if they have become that useless‽), surveying patients would cost too much…

I will ultimately defer to the experience of people in the field—I am not a physician or statistician—but sometimes I feel like I’m just being fed arguments repurposed from the bad cops playbook. Oh, we can’t ever possibly start quantifying individual officers’ use of force, because some parts of the city have more crime, and if we do that then those officers will look worse, so they will stop responding to violent calls in those areas, and there’ll be even more crime, so get off our backs man and stop trying to create more objective metrics for accountability.

To be clear I don’t think you are arguing in bad faith and I don’t intend my statement about accountability to suggest that you personally are trying to avoid it or shield bad actors or anything. What you are saying is probably true and I may be wrong to challenge it at all since I have no personal insight into what is going on behind the scenes, and I genuinely appreciate you answering my questions from your perspective and giving me additional perspectives and things to think about. It just feels so, so frustrating as a patient. All I want is some ability to measure risk that’s better than looking up studies on procedure X on pubmed that I’m unqualified to interpret (and which don’t apply anyway because the lead author of the research won’t be doing my procedure), or shaking the magic eight ball.

If I were a physician, I would absolutely want to track the shit out of my own patient outcomes so I could improve, and the amount of resistance that seems to exist (this is not the first time I’ve talked to docs about this and received similar fatalistic answers) is just baffling to me.

We’re not talking about Frogger here, metrics aren’t some high score, if you have an 80% complication rate for some procedure that isn’t necessarily a reflection on you as a practitioner but it would suggest that there is a problem that needs to be identified (bad procedure, bad training, bad support, bad patient, bad luck). Right now, it seems like no one really knows.

This isn’t bullshit alternative medicine, so why, when I scratch beneath the surface, does it so often feel like it is anyway?

[0] https://www.zeldman.com/2009/03/20/41-shades-of-blue/

First, patient privacy laws (while a net good) scare institutions from sharing high quality data. The best you'll get is small batches of de-identified data released infrequently. Patient notes are unlikely to ever be released in large quantities since they can so easily pinpoint some patients.

Second, you need to coordinate thousands of physicians and/or healthcare facilities across the US (or world) to record data on their own performance in a standardized way. Many hospitals do this on some agreed upon metrics (30-day readmission rate, hospital-acquired pneumonia rate, average HbA1c level for a doctor's diabetic patients etc.) largely because they're used to determine government funding/penalties. But at the end of the day, there's no direct incentive for physicians or institutions to collect any other data on their own performance and release it publicly. In fact, there are more risks to doing this than benefits. To solve this problem you need to tie hospital funding with requirements to collect and publicly share performance data while also mitigating punishment.

To physicians' credit, many of us are actually motivated to at least privately collect data on our own performance so that we can improve. But this is incredibly difficult and time consuming—especially for those of us who come into contact with dozens and dozens of patients every day. Sure, better data collection tools would dramatically help us monitor our own metrics, but the only entity with the cash to purchase or create these tools is the hospital, and its reply is going to be, "What's the ROI?" And the answer is honestly probably negative. You may suggest buying/building small relatively inexpensive tools (as I've personally tried), but the hospital isn't interested. Like most large enterprises, hospitals want long-term contracts, dedicated support teams, and tried and true tools. Small tools pose too much of a security risk and maintenance headache.

As a separate observation, any time data is kept, turned into metrics that then become the basis for goals ("I want to have a better-than-average success rate, as a surgeon") then the system gets gamed.

I had a boss once propose to down-rate agile teams that didn't get done everything they took on in a sprint. He apparently didn't realize that teams would immediate game the system by taking on less actual work. They could up their 'point' estimates for each task, and always get the work done.

I'm arguing that a sufficiently comprehensive system would take in to account whatever that doctor realized (and perhaps much more) and compensate for it when determining expected outcomes.

A simple illustration: I have medical issues with no meaningful diagnosis, despite seeing many doctors. If the medical community can't figure out what's wrong, how can they have an understanding of all the relevant factors in determining risk?

This isn't directly related to your point, but why is this even the norm? Why are you going from human to human seeking answers to some arcane mystery like you're on a Skyrim quest.

Imagine a system where you wouldn't need to see any doctors. You would type in all of your symptoms as accurately as you can with as much detail as you can, perhaps with a timeline, and as output you'd get the most likely causes (a diagnosis). Maybe that system would even have your medical history (and that of other people and related diagnoses) to better predictions.

It seems to me that a system like this would be significantly better than going to a couple of humans that are arbitrarily local to you and asking them to figure it out. It is slowly improving all the time just in the form of Google and WebMD. Even before 2010 I accurately diagnosed myself with Bell's palsy with the internet and the doctor begrudgingly asked how I had made that diagnosis. Confirmation from the human doctor was nice but redundant.

I'm also arguing that it's not just a psychological resistance to a data-based evaluation system. That people understand the system would be subject to being gamed, and the overall quality of the work would actually suffer. (A bit analogous to how peer-review and the tenure game has interfered with good science practices.)

But there may be no other doctor.

Think of this way - if you're a doctor specializing in the treatment of septicemia, a lot of your patients will die. If you're really good, you'll likely get the hardest cases. So your "success rate" may be lower than another doctor who isn't as good but doesn't see such tough cases.

You want risk-takers who repeatedly tackle the surgeries and (ideally) get a more positive outcome percentage than a newbie.

Then you could make a career out of doing well on difficult cases, or out of doing better-than-average on easy cases, and either would be viable.

For my daughters tonsillectomy, the doctor was very happy to share how her stats for post surgery bleeding compared to both other doctors in her group, and the national average. But I live in a Boston suburb and every doctor is a lecturer at either Harvard or Mass General.

Another question to ask is will an intern take part in the surgery. At teaching hospitals the answer is almost always yes. You can ask if they operate at any other hospitals, and again the answer is almost always yes, they operate at a suburban, non-teaching hospital where they will be the only one operating.

I got a little bit humbled at Boston Childrens Hospital. I was doing some Googling about the risks of a CAT scan and asked if they did low-dose ones. They informed me that they in fact invented that procedure. Sure enough, the paper I was looking at was authored by a doctor on their staff.

1. Being a lecturer at Harvard does not correlate with being a skillful clinician

2. Your view of the clinical system is very skewed, and will bring you more risks than benefits.

My bias is towards surgery at a good regional hospital (Newton-Wellesley for example) with a surgeon who teaches downtown and does lots of surgeries.

What is my skew that that is bringing me more risk? I used to think all doctors were about the same. Now I realize that is about as true as all baseball players are the same. There are hall of famers as well as some who could be sent down to the minors. The trick is figuring out who is who, because other docs won’t say.

Precisely. And I assure you, as a patient you can't possibly figure out who's who. Your bias is you think you can.

Then somebody with high success rate and high refusal rate stands out as a red flag.

Sounds like a sufficient reason for single payer healthcare and single payer malpractise compensation even if all the imagined downsides were real.

Insurance companies really aren't the villains in the US healthcare system, they're going to make money no matter what because they pass cost increases on to their subscribers and are capped in how much profit they can make via regulation.

It's just not unviable, I don't think it's even possible. As soon as a metric becomes tracked, people are incentivized to game it.

From my own experience as a very high-volume eBay seller, mandating a certain return rate led us to simply discourage customers from using the (convenient, well-designed) integrated returns systems. Mandating that only a tiny fraction of a percentage of items can be cancelled due to being out of stock leads to sellers sending either the wrong item or a fake tracking number (this gets us all the time on AliExpress).

If data-driven software companies can't handle it for something as simple as eCommerce, I have no idea how the medical industry is supposed to get it right.

And the for profit ones are making plenty of money whatever regulations theyre subject to:

>During 2010, Health Care Service Corporation, the parent company of BCBS in Texas, Oklahoma, New Mexico, Montana and Illinois, nearly doubled its income to $1.09 billion in 2010, and began four years of billion-dollar profits.

I'm not saying they're villains, but "they're going to make money no matter what" isn't a compelling argument to me, and I have precisely 0 faith in the government to meaningfully regulate them.

It's still a fairly hard problem. I've had several very clever data scientists on teams who have gone "Oh, this is just an X problem..." and then 9 months later they're still trying to get a model to perform better than "Just take the average".

What's another way to describe the "best doctor in the country"?

"Marginally better than the next best option".

Best doctor in the country can quite easily still be "bronze standard."

There's an expectation of quality in saying something is Gold Standard, it's not an entirely arbitrary label.

But the standard of care might just be “give morphine to ease pain until death”.

You are being sold

Thanks for sharing, love the % success rate question for surgeons.

I noticed that since I got "Dr." put in front of my name on my medical records, doctors tend to firstly ask what I'm a "Dr." in, and secondly tell it to me straight.

I disagree with the characterization of medicine not being able to treat so many things. Many things are incurable but a lot of medicine/public health is so effective we barely think about it. Of course we are going to notice and pay more attention to the things medicine sucks at treating, because they’re real problems that inflict a lot of pain due to the lack of treatment.

But medicine is very good at treating plenty of things like infections (of many different kinds), traumatic/acute injuries, and many disabilities. Most of the chronic issues that medicine fails to address are simply lifestyle issues that medicine tries to alleviate the symptoms for. Yes there are certain conditions medicine doesn’t begin to fully understand like Alzheimer’s or various chronic pain conditions, or where treatment is still pretty middling like Cancer, but a lot of the biggest things are treatable very well - we just don’t notice them much because they are treated so well.

> But medicine is very good at treating plenty of things like infections (of many different kinds), traumatic/acute injuries, and many disabilities.

I agree that medicine is very good at treating infections and traumatic/acute injuries. Which disabilities are you referring to? Outside of these categories, what can we we effectively treat or cure? It seems to be very little.

Maybe only a few things, but still affecting millions, if not tens of millions of people.

I also think that medicine is a victim of its own success, in two ways.

One, how many funerals of people in their thirties to fifties does the average person go to, these days, compared to say the 1920s? It's hard to see things that don't happen.

Two, success breeds hubris which breeds a sense of being right whatever the evidence may say.

Our understanding of the human body has advanced enormously with the advent of modern science, but it is still far less complete than most people probably realize when they interact with doctors. Not to mention systemic issues (common to any technical discipline) where medical professionals have to effectively practice with a degree of faith because no one has time to actually review the literature underpinning any given consensus, and that occasionally breeds long lived orthodoxies which do more harm than good...

I found the same thing for science in general. When I did my PhD and saw how the sausage was made, I was blown away by how obviously unscientific and irrational the entire process of science was.

That's probably because miracles are being pulled off on ocassion

The thing is, application of the germ theory of disease and Harvey's theory of circulation of the blood by action of the heart (and consequent developed understanding of the role of the blood, and of blood types) did produce miracles. Reliably safe milk and meat. Penicillin. Reliably useful blood transfusions. The tetanus vaccine. The polio vaccine.

The great polio epidemic was only four-ish generations ago. In my childhood I knew one or two people in iron lungs, having contracted polio before the vaccine. The vaccine was miraculous to every parent at the time.

The evidence has been culturally transmitted through the generations.

Citation needed.

Look at every wastebasket diagnosis (yes, that's a real term) out there. There is no "ethical", approved treatment. In fact, there's not even an understanding of what the condition is. Instead, doctors work down a list of bad ideas with their patients: all the various medications, supplements, and even surgeries that have ever reputedly worked. Many have uncertain evidence, many more have no evidence at all. Some patients eventually hit on something that works for them. Others don't.

According to your short statement: that's unethical. Bad. Stop!

So what's the alternative? Suicide? Doing nothing is intolerable.

doctors need to be up front with patients about wastebaskets though, and rule out other diagnoses. it's wrong to chalk someone's fits up to FND until you've ruled out epilepsy and other organic causes, for example. and even things like FND are probably "real", we just don't know enough about them yet.

Even someone's fits might not be an FND after ruling everything else out. There are atypical presentations of organic diseases we don't have tests for. It's fine to use wastebasket codes as long as the patient understands, but I've also seen doctors lean on certain things really early in notes (eg FNDs) without much consideration, and it's a little much to me.

How does that relate to wastebasket syndromes? At least for the one I have (a migraine variant) -- every single accepted treatment falls in the same basket. Some evidence, but not enough that it's really a good idea to use it. Unless, that is, the syndrome is ruining your life.

And behind this argument that yet more things should be taken off the shelves and regulated, I'll note that the US has one of the most restrictive, patient-unfriendly regulatory atmospheres in the world. It's goddamned ridiculous, pardon my French, that the "solution" to phenylephrine not being a good decongestant would be to regulate it so that it can't be sold without a prescription. Doubly so, in a country with a healthcare industry that's so thoroughly corrupt and dysfunctional that a vast swathe of patients can't afford to even go to a doctor to get whatever tenuous recommendation they may have. (Phenylephrine, by the way, has a number of uses other than decongestion.)

... that was a rant. But this system is truly screwed up, that fact has affected my life quite negatively, and it's annoying that the knee-jerk reaction so many people have is to keep playing along with this completely broken ethical system.

Personally, I think many of the cases where something works for one patient but not another is actually saying there's more than one possible cause for the situation.

Maybe that's true at a population level, but I can take it. Just tell me the truth. If you can't treat me, then just say that. I don't want to be "ignored," but I'm not interested in being placated, either.

This, basically: https://www.youtube.com/watch?v=NyugCJ40IIw

My experience has been that 75%-90% of US doctors are borderline incompetent and that I can and do routine out-diagnose my own maladies better. Of course this also means I can lead them by the nose to get them to diagnose anything I please. Which is horrifying - they are Epic Fail if I can do that.

Admittedly I was at one time planning to become a doctor myself so I ravenously consumed everything about biology and medicine while a teen but it seems very few doctors were anything like THAT with passion I had.

Even worse few seem to know what the scientific method is, let alone practice it in any as doctors. This is equally horrifying.

A runner up was a co-worker who WAS diabetic after a pancreatic infection. He later went to the doctor to complain about some knee pain. The doctor looked at the symptoms (e.g. joint paint, diabetes, shortness of breath) and diagnosed asymptomatic obesity. The "asymptomatic" part comes from the fact that my co-worker was built like David Bowie. However, the doctor declared that the remaining symptoms pointed towards obesity and that losing forty pounds would clear up all his issues.

No surprise there given my ethnic background (which frankly should have been a dead giveaway, because thalassemias are not uncommon at all), but I saved myself from being put on iron supplementation which is already potentially dangerous for a man, but especially dangerous to someone with thalassemia.

Modern medical results would absolutely be viewed as a miracle to someone just a few decades back. Something like 90% of cancer cases are either cured or successfully suppressed (to the extent that the sufferer ends up dying of some other cause). Almost all endemic diseases have vaccines. Virtually no one dies of a bacterial infection today. Even most autoimmune disorders have effective treatments now.

The fact that there are problems yet to solve in medicine, and remaining voodoo in its practice, still doesn't change the fact that we're living in a miraculous age.

This is not correct. It's true in the US for prostate cancer, which is one of the most notoriously treatable forms of cancer, but it's not true for cancer at large.

(It's also not true for prostate cancer in many other developed countries, which actually have a worse track record at treating cancer than the US does)

"Half (50%) of people diagnosed with cancer in England and Wales survive their disease for ten years or more" [0]

Since lots of cancers and lots of deaths are in old people, 10 year survival is quite a high bar.

[0] https://www.cancerresearchuk.org/health-professional/cancer-...

Lumping all forms of cancer together is misleading, because cancers have dramatically different mortality rates. You need to separate by type of cancer, or else you're really just measuring the relative prevalence of different cancers.

As it turns out, the UK has a relatively low survival rate of cancers compared to other developed countries, including the US.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6...

I get that this explanation fits with a common preconception of the US, but it doesn't bear out in reality. The US has a higher survival rate for all common types of cancer than all other developed countries, and this has been consistently the case for the last three decades.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6...

As someone who has autoimmune diseases, you must be getting your information from a source I'm not familiar with. Auto-immune disease are a long game of guess, test, and adjust.

For example if there is no evidence that a better diet or reducing EMF or strength exercise or drinking pure water etc. will help your condition but there is no harm and fairly low cost to try.

Stay sceptical and open minded too.

I grew up with ER doctors. There are dozens of things that would have killed you on 1990 that you’ll walk away from today.

But in the slow transition from a professional discipline to a sort of IT help desk for health delivery, billing comes first, and even that sucks.

This goes for doctors, drugs, surgeries, devices.

If you want good results, you really have to take matters into your own hands, search for possible treatments yourself, evaluate several doctors until you find a competent one, research possible adverse side effects yourself etc.

Example: somebody in my family had two different surgeries by non-standard methods that gave her significant advantages over the regular methods; one of them offered (to our knowledge) in only one hospital in Germany, the other in three. In both cases her regular doctors didn't know about these methods, and were really surprised to hear about them afterwards. In both cases, she learned about these methods through some non-medical channel (a relative read about it in a newspaper, stuff like that).

If you just go to the next specialist for the field you need, chances are you don't get the optimal treatment, and the rarer the disease, the less like you get a good treatment.

The other was a "tissue engineered" heart valve. They take a human donor valve, and over the course of a few weeks remove the human cells in some kind of soap bath, only the collagen matrix remains. This reduces rejection to basically zero, and allows the patient to live without immune suppressants for the rest of their lives.

Alternatives would be a regular human valve (+ immune suppressants indefinitely), animal valves (same problem) or artificial valve (typically don't last for longer than 10 years, and always has increased risk of persistent settlement with bacteria, so need to take antibiotics for every minor thing).

(sorry, medical English is really hard for me, hope this makes sense; if not, feel free to ask).

Healthcare is much more than being operated or receiving some treatment for a rare condition, both things that are very much researched and done outside the US both privately and with public money. Healthcare is also about allowing people with health problems to live with dignity and allow then to function in society. To care for the weak and not only to restore productivity of a broken cog. Healthcare is about a strong first line of care that prevent conditions to get worse and irreparable. Many countries with a thousand or less of US's GDP can teach a lesson or two on that. In any case, most countries are slowly copying many aspects of US healthcare, I guess it must be indeed be better, or perhaps more profitable.

US is also able to attract the best professionals, including MDs. Here in Canada we're left with the "leftovers". Those that did not make it big in life.

the US just uses ERs as an infinitely shittier but equally costly version.

You can't even shop around for a family doctor. You have to sell them accepting you as a patient. With that power inbalance you better follow what they suggest and avoid questioning too much or you won't have a doctor.

With HMO's, you're guaranteed someone will be assigned to you. With traditional insurance, there's a big labor shortage, and there are often <= 1 doctors accepting patients in some towns.

In the USA you literally shop around. They advertise. You can literally look for the best surgeon and ask around.

Acetaminophen would almost certainly be in this category, if it could even get FDA approval at all. The effective dose is dangerously close to a toxic dose that causes liver damage, and not comfortably-far from the LD50. The only reasons acetaminophen is OTC is that it's been informally grandfathered in, makes an absolute fortune for pharmaceutical companies, and doesn't get you high.

this is the big one. Phenyl-epinephrine doesn't work at all, it's consistently failed to outperform placebo, and the only reason it's on the market is because the FDA doesn't like pseudo-ephedrine (sudafed) because it can be used as a precursor for meth. Same reason they've required individual blister packs for sudafed (if only there was some illicit drug which gave you the focus and drive to perform repetitive tasks for hours on end...)

Same thing for imodium. The reason all of a sudden it's in blister packs? People found a way to abuse it and the FDA is going to ruin it for the rest of us.

In the case of acetaminophen, the FDA actively uses it as a poison to "discourage" addicts from taking large doses of painkillers or cough syrup. The point is explicitly that if you take too much, you'll burn out your liver, the FDA is actively inserting poison into the medicine to "discourage abuse".

In all of these cases, the common factor is that it makes things much more annoying or even dangerous/lethal for average people, while addicts are completely unaffected. No opiate addict in the world is going to get clean because of individual pill blister packaging. Meth addicts will just pop some pills and churn through the sudafed blister packaging, etc.

I am waiting for the other shoe to drop on imodium, now that the FDA is targeting it, it can't be too long until it's behind the counter or pulled entirely. And as someone who (TMI warning) suffers from what I'd term as moderately frequent IBS (never diagnosed but maybe I should) that's really going to suck for me.

The FDA is simply an instrument of drug-war policy, they're not oriented towards patient care and outcomes at all.

I am not sure that’s wise policy, but if you don’t think Tylenol is all that bad (again, I’m not sufficiently informed to say this, but the FDA obviously thinks it’s safe), then it’s not a bad overall policy.

It sounds like it could be either situation, I’m just looking for more evidence before making up my mind. (Yes, I am aware the US government poisoned people during prohibition in this exact manner, but I dispute that has any relevance as the decision makers and cultural awareness is very different now. We’ve come a long way since the 30s)

Similarly, cutting opioids with Tylenol is not actually intended to be a deterrent to someone who gets their hands on the pills rather it deters people involved with illicit drug manufacture and distribution from using it as a base to grind up and sell.

Tylenol is really not super safe, at least by todays approval standards. Most official sources, which unsurprisingly have a huge bias towards Tylenol’s safety, state that allergic reactions are very uncommon, but recent meta-analysis’ are beginning to uncover that mild to moderate allergic reactions to acetaminophen is more common that originally thought. It does not get reported because if you’re already feeling like crap when you take it, some mild itchiness, redness, and discomfort would not be out of the ordinary without the Tylenol. As mentioned before, the toxic dose is much too close to the effective dose, I’ve heard from medical professionals that doubling a single recommended dose on extra strength Tylenol is enough to cause long-term damage to your liver. On top of all that, the fact that it is a weak pain reliever at best would solidly put this as a drug that’s not super useful.

I have a very low opinion of how we go about drug policy in the US. I am on a very controlled medication due to a sleep disorder (that causes hypersomnia) which I cannot go off for safety reasons. I also cannot get it filled more than 24 in advance without complicated authorization procedures that must be completed in the correct order. It’s a goddamn mess and serves only as a punishment to law-abiding patients for needing this medication. It also does nothing to curb illicit use because synthesis of a more potent product is so trivial.

This is an example of poorly targeted legislation, which was put into place because it’s the only thing they could exert control over. It does not further the stated goals of drug enforcement because it’s so easy to manufacture this stuff and the resulting product is so easy to move, bad actors can simply avoid this system. While I’m spending 3 hours every month orchestrating the complicated dance of my prescription between my providers, the pharmacy, and my insurance, someone is making a batch of shake-and-bake meth in about 3 minutes.

AFAIK most/all rubbing alcohol (at least that which is sold in the US) is isopropanol, not ethanol. You can buy ethanol in not-for-consumption form, as denatured alcohol.

There are additives in ethanol sold as an antiseptic to discourage drinking (various bitterants, not benzene).

Here's the actual formula they have to use that's enshrined in the law. https://www.law.cornell.edu/cfr/text/27/21.49

Its general sold as "ethyl alcohol" not ethanol, but its the same thing.

I accidentally found a gray market source before discovering it is banned. Makes me wonder why they still bother denaturing it.

"Not everyone thought it was a good idea to make alcohol deadly, when making it illegal hadn’t stopped drinkers, and New Jersey Senator Edward I. Edwards called it “legalized murder.” However, the Anti-Saloon League persisted, arguing that legal alcohol had killed many more in its day than denatured alcohol would kill during the transition to a teetotaling world. “The Government is under no obligation to furnish the people with alcohol that is drinkable when the Constitution prohibits it,” said advocate Wayne B. Wheeler. “The person who drinks this industrial alcohol is a deliberate suicide… To root out a bad habit costs many lives and long years of effort…”"

https://time.com/3665643/deadly-drinking/

But, I guess one important thing is whether such an additive is compatible with the altered substance still being usable for the purpose for which it is being made available.

Now, presumably something as simple as “dissolve large amounts of capsaicin in it” wouldn’t work (I’m not even sure if capsaicin can be dissolved in alcohol), but, what about something along those lines? Or something that just causes headaches, or vomiting?

Nowadays, of course, alcohol is cheap and plentiful enough that there's no incentive to re-nature it, and we can get away with much less extreme measures. In many cases, the alcohol won't contain any methanol at all, and may even be drinkable.

A good article on the government's arms race against bootlegging: https://slate.com/technology/2010/02/the-little-told-story-o... (also, the author's book "The Poisoner's Handbook")

https://www.law.cornell.edu/cfr/text/27/21.49

That formula clearly spells out rubbing alcohol and disinfectants under the authorized uses. It's toxic and unpleasant.

Choose your poison:

27 CFR § 21.151 - List of denaturants authorized for denatured spirits. https://www.law.cornell.edu/cfr/text/27/21.151

You will never find it without either Gualfenisin or acetaminophen.

Does DXM need either of those to do what it does?

No.

Would it simplify dosing to be sold alone so that laymen didn't have to worry about potentially overdosing on three drugs at once instead of just one?

Yes.

However, from the war on drugs perspective, that makes it "easier to abuse" to achieve it's hallucinogenic side effect. Bundled with acetaminophen or gualfenisin however, you'd have to be a chemist intimately familiar with how to seperate the other two components to distill DXM in any amount with abuse potential, and the naive non-chemist trying to get high will either end up puking their guts out (Gualfenisin OD) or burning out their liver (Tylenol OD, which is exacerbated by alcohol consumption as well).

The Tylenol one is particularly problematic, because acetaminophen is also commonly prescribed with other common multi-drug formulations that people may not realize are additive.

When you take the route of adding a substance that does harm to discourage a pattern of behavior, you are poisoning. Poisoning being the act of artificially and with intent increasing the toxicity of an imbibed substance to disincent some pattern of behavior.

This is actually based on a natural pattern of behavior by the way. There is a mushroom that is generally completely harmless... Until you drink alcohol. Metabolizing the mushroom depletes the supply of the same enzymes that detoxify alcohol (and Tylenol).

https://en.m.wikipedia.org/wiki/Coprinopsis_atramentaria

So to be clear... If you call this mushroom poisonous, and it targets the same enzyme that alcohol does, then adding something like tylenol to something that doesn't need it to do it's job, you are poisoning.

It just happens to be handwaved because in the establishment's mind, those damn druggies aren't worth caring about anyway.

Not a partaker of DXM, but very concerned with the ethical implications, and the adverse contribution to trust in public health measures that this practice entails.

https://www.amazon.com/dp/B09LKLNKZ7/

First off: Amazon is NOT my first choice for a source of pharmaceutical. Period.

Second, spin through the comments. Quoted below is an example of exactly what I'm talking about:

>Active ingredient is dextromethorphan. This blocks cough receptors in the brain. Got a cough? Get this!

>2. No extra ingredients. It’s so hard to find pure medicines just for cough. Store shelves are littered with bundled products for all sorts of symptoms. I don’t like taking a bunch of unnecessary meds, so I buy single symptom products like this.

8<---

>Finally, these gels are only sold in some stores. Shelf space is limited, so they rather carry heavily advertised, bundled meds that pay bigger margins. But they are here at Amazon for a great price!

8<---

Point there being, you've got a system where being able to acquire unadulterated formulations of a substance is the exception rather than the norm.

If you look through drug applications or filings with FDA, you will find that many pharmaceutical companies favor highlighting "abuse-resistant" formulations of combo drugs, while downplaying potential harms and that marketshare of the pure drug decreases after an approval of a combo drug is achieved.

I have started to pay more attention to this sort of thing since they started toying with doing the same thing on stuff I take. I can see a blatant flex of incentive shaping when I see it, and frankly, I disagree with it.

Very vocally.

When I was much younger I had a bit of an adventurous spirit and never had problems finding pure DXM on the shelf. The issue I ran into most often was it was a frequent target for shoplifters so the name brand gel caps would often be out of stock. Usually you could find the generic store brand version though. Delsym was almost always available. The extended release may or may not be desirable depending on how long you want to trip, but IIRC you could just mix it with something acidic like orange juice to dissolve it and make it instant release. Just anecdotal I know, but that was my experience.

You can overdose from ~4 grams of APAP which you can ingest by taking 6 7.5/750 hydrocodone/APAP tablets

That's not nearly enough hydrocodone to kill you

According to this [1] the minimum single dose toxicity for APAP is more like 7.5 to 12 grams. Finding a value for a lethal hydrocodone dose is more difficult, but I did see 90 mg mentioned.

For the dose of Vicodin you specified, 90mg of hydrocodone would correspond to 9 grams of APAP. So it's a race that it looks like either one could win.

[1] https://www.uspharmacist.com/article/acetaminophen-intoxicat...

>There is no question that the upper threshold on the maximum daily allowed dose of APAP has been the subject of controversy.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4913076/

Opioids kill via respiratory depression, not by destroying your organs.

Here all I can think about are the paracetamol/acetaminophen effervescent tablets that come in tubes of 8 x 1g (or 16 x 500mg).

Prescription drugs are pretty routinely dispensed in just pill bottles also, though I'm sure there are some for which this isn't allowed.

The first doesn't really bother me. The last one is absolutely obnoxious. I'm guessing the FDA is pushing the last type for "drugs of concern" like sudafed or imodium.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC31616/

There is plenty of cough syrup without acetaminophen sold in the US, by the way. People like all-in-one products, though, hence there being many with it in it. I'm gonna need some evidence for the "FDA actively uses it as a poison", though. I'm not so convinced a lot of folks think about side effects of tylenol but instead, see it as rather safe.

And it really doesn't matter if a few folks will find ways around an intervention. An improvement doesn't need to be perfect to be implemented nonetheless - because, it is an improvement and as such, better than before.

A much better solution would be to have a robot pill dispenser that's hooked to the doctor's office, a pharmacy, and an alarm clock.

That isn't really a feature of old age. Some folks have some issues, sure, and sure - it is more likely when you are older, but by no means is it a given nor is it necessarily tied to old age. There are simple solutions for that, like ordering easy-to-open packaging from the pharmacist (here, they would literally put it in plastic bags). Some pharmacies already help folks organize medicines and I don't see where this would be a real issue.

I'll also state that most folks shouldn't need to buy a robot to take simple medicines plus it is going to add an expense that a lot of folks couldn't afford. It doesn't seem to be a huge issue in countries with blister packs that are fairly standard - again, pharmacies are generally helpful.

https://medlineplus.gov/ency/article/002598.htm

Common dosage forms and strengths:

Suppository: 120 mg, 125 mg, 325 mg, 650 mg Chewable tablets: 80 mg Junior tablets: 160 mg Regular strength: 325 mg Extra strength: 500 mg Liquid: 160 mg/teaspoon (5 milliliters) Drops: 100 mg/mL, 120 mg/2.5 mL Adults should not take more than 3,000 mg of single-ingredient acetaminophen a day. You should take less if you are over 65 years old. Taking more, especially 7,000 mg or more, can lead to a severe overdose problems. If you have liver or kidney disease, you should discuss the use of this drug with your health care provider.

The one-size-fits-all drug dosing we do in this country seems crazy to me.

"Research Chemical" drug users have developed techniques to calibrate doses of substances with unknown potency - start with ~100th of what you expect to be an active dose and then gradually double it until proper effects are achieved.

I'd imagine it would be more expensive for pharmacies to distribute drugs in this way, but allowing patients to titrate their doses could significantly reduce/avoid negative side effects from just throwing the same standardized dose at every person with a prescription regardless of bodyweight.

Would be super cool if we had an objective measure of proper dosage - such as blood concentration or excreted metabolites - to give us more insight into how the drug is being metabolized by the individual.

Edit: just to be clear, there are times when it might make sense to take oxycodone or hydrocodone alongside acetaminophen, but they should be prescribed separately and with caution. The reason they're combination drugs is because the toxicity is a "desirable" side-effect meant to discourage abuse. It's that reasoning that is evil.

Having chronic pain sucks, having something that you can take for it, especially something boring like Tylenol that can't be snatched away from you by doctors/police/etc, is a huge quality of life issue.

Also, we need to really research the NSAIDS after surgery thing, afaik, there has been nothing super rigorous on it and is only going off of the common knowledge that they do thin blood. I do not like Tylenol and my partner is allergic, we’ve both broken the rule about nsaids post surgery.

the "daily" recommended doses are for a single day. If you are taking it daily you need to at least halve the recommended dose. I wouldn't have said a week was a problem but... yeah. Tylenol is dangerous.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4913076/

Specifically this study referenced: https://jamanetwork.com/journals/jama/fullarticle/211014

> One study reported that ingestion of the recommended maximum amount of 4000 mg of APAP for 2 weeks resulted in the asymptomatic elevation of alanine transaminase, up to three times normal, in 40% of patients.19 These transaminase elevations did not amount to any clinical significance, and after the APAP was discontinued the transaminase levels returned to normal.19 Yet, while asymptomatic, chronically elevated aminotransferases may be of concern to healthcare providers, leading to further costly diagnostic studies or changes/restrictions in necessary medications

If anything the summary in that review is underselling it. Average was 2.78x baseline (3x is considered clinically significant) and 20% of the population was over 5x the peak (so, 20% had clinically significant elevations from the study). By peak levels, around 27% of the population saw peak levels of 8x baseline. So basically, even the "average" participant was almost to the threshold of clinical significance just from this study (at the recommended daily dose) and a cohort of around 20-25% will see clinically-significant warning signs at the recommended dosage, even among healthy patients. And risk factors significantly increase that.

That's basically a "liver stressor" enzyme, even if it's not killing the patients over the course of the study, it's not a good thing. That's your body's warning signal that it's stressed. And generally that's an uncontroversial finding I think, everyone agrees tylenol is a liver stressor, but they just have various thresholds of the acceptable risk. Would I do it daily? No.

And in med-speak, that's what they're saying here too. Use with caution, don't go above the recommended dosage in acute situations and use caution with chronic dosing. https://pubmed.ncbi.nlm.nih.gov/11847957/

Anyway, the rule of thumb I always heard is that half of the "daily" dose appears to be more appropriate for chronic daily usage. I am not a doctor and you can do whatever you want, but that is personally what I would hold to. Going less, or picking a different FDA-approved alternative like ibuprofen or aspirin, is always a perfectly acceptable choice.

That number appears to be reasonably supportable too. Instead of "half of our patients were over triple their baseline ALT level" this study found that 50% of the daily doage, chronically over 12 weeks, gets you to a 20% average increase in ALT levels. It's never not going to be a liver stressor and if you have other risk factors then you should probably stay away entirely (I think that's just good advice in general) but 20% increase in ALT after 12 weeks is a hell of a lot better than tripling your ALT in 2 weeks. But even then, during a 12-week study of 94 healthy adult patients, at half the recommended dose, they still had to withdraw one participant due to hepatotoxicity. https://pubmed.ncbi.nlm.nih.gov/25899926/

(as far as risk factors, see the first link above for a good review, aggravating factors for hepatoxicity can include things like non-alcoholic fatty liver or nutritional deficiency. Which basically describes an overweight computer-toucher with a poor diet to a tee.)

No. We've got thousands of people living more or less permanently on the maximum daily dose, including some children and vulnerable populations. Yes, some of those people have elevated liver enzymes. Yes, Tylenol is dangerous, but certainly not more than the alternatives. NSAIDs are certainly not any less dangerous, especially in populations with high prevalence of diabetes and kidney failure.

Tylenol overdose is one of the most frequent suicide plans in teens, with lethal doses usually starting from 8g. This is one of the reasons Tylenol has such a bad reputation.

Remember, there were never Phase trials showing 4g is the right maximum either. It’s just grandfathered in Uber the “well I guess if it were dangerous we’d have noticed by now” standard. But did a statistically large enough segment take exactly 4g over a course of years such that we can definitively say that’s safe? Most people are taking lower doses and shorter doses. At least on paper.

It's "there's no double-blind study that shows masks can prevent the spread of covid!" redux. And actually it's worse because there already is a standard for what clinically-significant elevated levels of that enzyme are, and healthy study participants are blasting right by it. That's not relevant .... because?

It's not just a random number going up from some un-related mechanism, it's liver stress, they even think they know what the mechanism is. It’s a reaction that is well-known for this drug, as a warning sign for this problem. Claiming that it suddenly doesn’t mean the same thing it’d mean if you took 0.001mg more is just pedantic. It was never formally studied and approved, it would be completely unsurprising if they got the number a little wrong.

And again - that's study participants who are chosen to be healthy. If you're fat, or aren't getting your macronutrients, your risk is much higher.

Using a lower dose or using something else is always a valid option. "The dose makes the poison" and using the lowest effective dose is absolutely standard practice and any doctor is going to tell you that's a baseline they always operate under.

Anyway, do whatever you want personally, but I would personally think strongly about staying at half the recommended dose or less for chronic usage, or looking for an alternative option. 20% of the healthy population, plus the unhealthy population, is a decent chunk of people.

Also note that those dosages are only for single usages! Tylenol also has a fun thing where daily/chronic usage within the "safe" dose can still cause liver damage. Chronic usage, you need to halve those doses.

The causal mechanism is believed to be basically low-level liver damage. Drinking a sixpack of beer once every couple weeks is fine - it's still not healthy, it damages your body, but your liver will repair itself in the meantime - but do it every day and your body cumulatively cannot repair the damage, while drinking a ton could cause acute failure. Tylenol actually works the same way - every dose is damaging your liver a bit, but if you don't do it every day it's fine, your body will repair it. But if you do take it daily, your body doesn't get a chance to repair the liver damage that tylenol causes, and the actual "safe" dosage becomes lower.

That puts the actual "safe" dose at closer to 1500mg per day for an adult. Having a 2.5:1 theraputic ratio on an over-the-counter drug is absolute fucking insanity.

And worse, those numbers are for men - they're lower for women. Yes, so is the theraputic dose, but they don't make special pills for women. Taking a standard dose (two 325mg pills) twice a day can cause liver damage to women, that's above the safe threshold for daily/chronic use. And that's not something people really consider when they pop a couple tylenol.

And then you've got combination products. OK, so you get sick, you take a couple tylenol and a dose of cough syrup. The dose of cough syrup likely is another 500mg or so of tylenol. So you actually took a 1125mg dose. And then you do it again before you go to bed. That's edging into dangerous territory with tylenol.

Obviously "don't do that", read the label and don't double up on an active ingredient that's already there in combination, but combination products are implicitly dangerous, they are fishing for that to happen, encouraging it. But the FDA wants it because it "discourages abuse". That's literally more important than burning out your liver.

The rest of the world uses tylenol in very niche situations. Usually it's behind the counter at a minimum (not always, but usually) and you probably will be told to take some ibuprofen instead. Ibuprofen and Aspirin are not perfect but they are much, much, much safer than tylenol is.

Tylenol is absolutely, completely, absurdly dangerous and should not be anywhere near as common as it is in the US, but drug war + legacy product sales rule the day.

To echo another sibling commenter here, I don't allow acetaminophen in the house period. It is an accident waiting to happen. I certainly don't allow combination products, and I will actively go out of my way to buy anything that doesn't include it. This is overkill as a single childless person who is aware of the danger, but you never know when something could go wrong and the cat knocks the bottle off the counter and the dog gets it, etc. You just should not keep dangerous things around unless you absolutely need to. Some things you can't avoid, but it's not hard to just buy ibuprofen instead of tylenol.

Instead there's dozens and dozens of GSK's Panadol paracetamol (acetaminophen), some of which even next to a cash register as a throw in.

I actually only ever hear about acetaminophen/paracetamol being dangerous from Americans - in other Anglo countries everyone will happily suggest you take it all the time, it is available OTC, and it comes as something kids will mistake for lemonade.

https://www.amazon.co.uk/Lemsip-Cold-Blackcurrant-Flavour-Sa...

> Ibuprofen and Aspirin are not perfect but they are much, much, much safer than tylenol is.

Only short term. Ibuprofen is less safe taken chronically, it'll destroy your stomach lining.

https://www.health.harvard.edu/pain/acetaminophen-safety-be-...

4,000 mgs is easy to hit for people who don't realize that it can be dangerous. I know lots of people who would say "Well, my pain is bad, let me take double"... which for extra strength would be 4 x 500 MG, which is 2000 MGs in a single dose... which then if you do it twice in a day is right there at the 4000 MG mark. Most people are fine with that, but some people can get really sick.

If the person then does it 3 times a day, they are close to the danger zone for most people and over the danger zone for some people. Then multiply that by a few days....

You can easily say, "Well, they are taking more than they are supposed to!", but it is really common to take a bit extra if you feel really bad without realizing how dangerous it is, because Tylenol is `safe`

Ulcers ("destroying your stomach lining") is less bad than "destroying your liver", and typically you will have to screw up harder before other NSAIDs reach that level. Tylenol literally is dangerous following the directions on the bottle, because those directions aren't calibrated for chronic usage, when they say "daily max" they don't mean you take it daily, that dose is even lower.

again, I don't do analgesics daily but I will be sure to adhere to the doage schedule on that. Pain medication is such an unfortunate area of medicine.

I just looked at a bottle of it here. Yes, 500mg. Adult dose: 2. That's 1,000mg. Every 6 hours to a maximum of 6 per day. That's 3,000mg/day. Danger at 7,000mg/day means a therapeutic ratio of less than three--nothing like that should be OTC and it's use should be carefully considered.

Of course that's over the counter. Prescription strength also exists.

I'm a fan of switching between two pain killers / fever reducers (and only one liver killer), overlapping the effective time window by a few hours, but keeping both at ~50% the recommended max daily dose (a doctor recommended this to me a few years ago).

Of course, that makes the dose schedule more complicated, getting back to the problem it is trying to solve.

>doesn't get you high

A huge point in its favor if you can't lay in bed opiated all day.

Granted, I've had to learn to put up with a lot more constant low-level pain in my day-to-day life. But I think that's a reasonable trade off for choosing between cooking my kidneys (aspirin, ibuprofen) or blowing out my liver (acetaminophen).

I had a really weird 1-in-ten-million side-effect with Naproxen sodium. It caused hard insomnia (confirmed under a doctor's care, this was before it was OTC).

I find this pretty shocking. Is this how people normally take painkillers, would you say? Speaking for myself, I normally go for years without taking anything.

It used to be the doctors would have me bomb my system with antibiotics, decongestants, and, yes, painkillers. Forty years on, we know a bit more, or at least I do, and I avoid as many medications (and the side-effects which increase with aging) as I can. I also suffered from tendonitis in the knees, so all of this put together meant I was regularly taking Tylenol or Advil for one or the other.

Then I stopped. I stopped using Tylenol unless I had a fever, or a really bad headache. When I got a sinus headache the first thing I'd reach for was a netty pot or sinus rinse instead of decongestants and painkillers. Physical therapy helped rehabilitate the knees, and when it rains, I just suck it up and limp for a day or two.

Those things and a few other medical issues add up to a steady catalog of pain that I just ignore for most of the day. In some cases, I stretch or exercise. I consider myself doing OK if I'm taking Tylenol or Aspirin once a quarter.

I'm happy you need no painkillers whatsoever for years on end. I think that's how it's supposed to be. For some people, it doesn't work out that way.

https://jada.ada.org/article/S0002-8177(18)30117-X/fulltext (the result are in table 1)

(Also, for drugs that you have to take to get through the day, the lack of a buzz is a definite benefit, and not just because it closes off one argument for restricting them.)

Ibuprofen and other NSAISDs were approved not that long ago, cause plenty of GI bleeds, have nephrotoxicity when used chronically and increase the risk of cardiovascular events.

And they’re OTC.

Acetaminophen is actually very safe considering the number of serious events and the facts it’s in hundreds of different OTC combinations.

I take NSAID for pain, but personally I'm not too concerned as it's only a ~10-50% increase in relative risk. If I was at a higher risk for stroke or heart attack, or took them very frequently (say daily for arthritis) I'd probably look for alternatives, but there are lots of others things to worry about.

This is the latest FDA update I could find, there may be more information out there:

https://www.fda.gov/drugs/drug-safety-and-availability/fda-d...

https://hn.algolia.com/?dateEnd=1648670057&dateRange=custom&...

The highest dose that therapeutically is used is about 1000mg per dose. The fatal dose is about 15 times that amount.

To put it into perspective, a patient would have to be willfully taking 45 tylenol (325mg/pill) all at once to cause lethal liver damage. Doses like that are usually not accidental.

Other OTC drugs are much safer. I don't allow acetaminophen in the house. Pseoudoephedrine? Yes.

Acetaminophen also should not be taken as a hangover cure, due to interactions with alcohol (alcohol and acetaminophen compete for the same metabolic pathways in the liver, and this exacerbates the toxic effects of acetaminophen). The problem is that someone who's drinking and has a hangover is probably going to reach for one of the two most common OTC pain relievers in their medicine cabinet, and not consider that one of those two pain relievers should not be combined with alcohol.

I included the statistic in the first place because I thought it didn’t make sense to cherry pick the scariest statistics. I’m not fearmongering here, just trying to illustrate that acetaminophen should be treated with more care than we currently do. I think we could be making better health policy decisions about which medications are OTC and which aren’t, although this topic is incredibly complicated and doesn’t just come down to simple facts like toxicity.

But yes, acetaminophen is a drug, can be dangerous and shouldn’t be treated as benign.

I personally keep tylenol in the house because it's probably the best non-narcotic non-NSAID pain medicine.

We use it all the time in patients who are elderly with decreased renal function because they don't do well with opiates or NSAIDs (ibuprofen)

It seems like even gynaecologists are woefully ignorant & untrained in this disease, leading to so much unnecessary suffering by women (my wife included).

Guys & gals, if you or your partner suffer from endometriosis, listen up!

* Find the best gynaecologist you can that specialises in endo & can perform excision surgery.

* Burning off the lesions (ablation) is not an effective treatment. Excision surgery is by far the most effective current treatment. Unfortunately, it seems like many gynaecologists do not have the training to perform this surgery, and therefore don't even mention it (lest they lose your valuable business).

* There is absolutely zero evidence that pregnancy "cures" endometriosis, despite doctors continually repeating this myth. My wife's awesome gyno told us - and you can research yourself - that this is absolute rubbish.

https://theconversation.com/pregnancy-doesnt-cure-endometrio...

It causes me to wonder when I go see a doctor, what else are they ignorant about? I like to think I can defer to their expertise, and set my mind to other things. Maybe not.

That one is obvious: question too broad ... does not compute ... out of cheese error.

Back pain is a massive, massive thing - it sometimes doesn't actually involve the back. Here's an anecdote:

I (50ish y/o male) used to have episodes of quite crippling to very crippling "back pain". To cut a long story short, I found at least two causes (can't remember the medical term - indicator?) and sorted them. One was putting my wallet in my back pocket - sounds innocuous but it puts pressure on the buttock involved and skews your posture slightly. The other was seemingly ridiculous: When turning over in bed, I used to flick myself over by performing a sort of torsion twist about my spine. That's fine when you are 10 but not 30, 40, 50 etc.

Nowadays I simply avoid silly lifting postures and all is generally good. It took about four or five years to recover from past habits.

When I was a child/teen/young adult I had a habit of basically twisting myself in such a way that I stored energy and then released it to turn over - perhaps a bit like a rubber band being twisted. That's fine in a young body but not in an older one. Bear in mind that the same person (mind) is within both the young and old body and it took quite a lot of time to realise that I'm not as agile as I was.

I'm a lot more cunning these days and for example can actually ski far better than I used to as a child but if I fall, it bloody hurts!

Funnily enough the wallet thing is way more important to my wellbeing.

I suffer from IBS, and it's basically a diagnosis of exclusion of everything else.

> lack of consensus about how to treat some of the most common conditions in the human population (e.g. back pain)

Back pain isn't a condition, it's a symptom. And with the amount of conditions and diseases that have this symptom in their list, it's not surprising there isn't a "one-size-fits-all" remedy or cure to it.

I thought for sure there was a “ok now we hand this off to the labs so we can learn” step… but, no. It was just a shrug and literally “come back in 8 months if you’re still having problems.”

I became my own lab and fixed my problem. I reported my findings to the doctors, and never heard back.

Pretty disappointing.

I mean it’s human biology we’re dealing with. Most medicine is “we think is the best approach” with varying levels of data from “best guess” to “a few anecdotes” to “suggestive data” to “robust, well designed clinical trials”.

If we only ever treated people with data from the last bucket most of the time your doctor would recommend “just wait and hope it gets better”

I agree with everything you said except for this. If resources are finite to approve and regulate drugs, 3rd-party supplements are the first thing I want tossed before any other more critical medication.

Ex-doc here.

This comment reflects a common, but mistaken, believe that OTC = "essentially medicine, but safe enough to not need a prescription". In most cases, nothing could be further from the truth .

OTCs of course do include useful medications such as acetaminophen (eg Tylenol), ibuprofen (eg Advil), Aspirin, and so on. However, OTCs also include miscellaneous and assorted nonsense, such as the heroic quantities of vitamin C that many companies like to sell as somehow beneficial, and the assorted concoctions that fall under the banner of "natural health products".

In the United States, a product can pass as an OTC "medication" if it passes under the generally regarded as safe (GRAS) exemption. This basically involves sending documents to the FDA that suggest the product should be safe in humans, without necessarily having to prove it's an effective treatment for anything. Couple that with the fact that manufacturers do lie about how well they tested the safety of their products (many are fly-by-night operations with little to lose), and you end up with the situation described in the article.

You can probably blame the pharmaceutical companies for some of this confusion, as it is their wont to mix actual medications with miscellaneous nonsense in the pursuit of profit.

It's not grift, it's people with limited information and resources doing the best they can with their expertise. Should your doctor, lacking certain information, do nothing?

Every profession is the same: You rarely have the ideal of perfect information, enough time, enough resources. That's where human adaptability and expertise come into play: You find a way.

> I feel like my entire understanding of the medical system in the US was a lie.

How much is our responsibilities, especially as educated, informed persons?

I feel like so much of what goes on day to day is one grift or another.

(1) mast cell testing - negative (2) ige testing - mostly negative but i also avoid things i react to (3) endoscopy - mostly negative but some inflammation (4) psychological - medications didnt do anything

(5) Non-allopathic stool testing from Genova Diagnostcs? astronomically high secretory IgA levels, high zonulin levels, disturbed gut flora populations and altered stool enzyme levels. -> point this out to doctors “sorry cant help ya there. _that’s unvalidated_”

Me - well fucking figure out something to try then!!!!

Dead end. I am so sick of evidence based medicine.

Never tried the psych stuff. One doctor suggested it but it felt very much like they were pretending it had off-label relevance--but he ignored my saying capsules, not tablets. Sorry, you're not thinking about it and I'm not taking psych stuff without the doctors considering it carefully. And tablets that can't be cold-turkeied are a hard no for me. (I'm going to go sensitive to the tablet binder at some point. If I go sensitive to a capsule I can at least break it open.)

Nobody's suggested the stool testing, is that something new? I'm pretty sure gut flora play a role but I don't have details. (E-mail in my profile.)

I think if you disturb the flora and lining too badly the normal tolerance mechanism with Tregs breaks down. That’s my theory anyway.

It's astonishing. 80pc or more of shelf products in a pharmacy will do nothing and many will make things worse.

This is because of the oddly libertarian 1994 DSHEA act:

https://ods.od.nih.gov/About/dshea_Wording.aspx

From 1904 to 1994 the FDA was fairly strict about banning most herbal remedies. Indeed, the FDA was created, in part, to limit the types of "snake oil" treatments that used to abound, and to limit the claims that could made for unproven treatments. But DSHEA opened the door to unproven treatments. In theory, the companies behind these treatments are not allowed to make medical claims, but we've all seen them walk right up to the line and make claims that sound somewhat medical.

Then a 250 mg capsule of Vitamin C would be $14.00.