[bollockitis]

Remarkable story. It's amazing how closed-minded "experts" can be. I suspect there are many conditions that will eventually be understood thanks to the hard work of people who approach these illnesses with the curiosity of a scientist instead of the hubris of an "expert."

[tomhoward]

> It's amazing how closed-minded "experts" can be

Speaking as someone who has been in a comparable (though not nearly as severe) predicament to Lindsay's for several years, I'm more sympathetic to the experts.

Medical science is incredibly vast and complex, and is limited by external constraints like research funding, insurance, the political/social climate, and many other factors.

There is a limit to how much attention the practitioners and researchers can devote to any topic, and they have to focus on what will generate the greatest overall benefits whilst keeping themselves in a living.

And for every "tip of the iceberg" Doug Lindsay who figures out a valid diagnosis and treatment, there are countless time-wasters.

I've been one of the time-wasters in the past, and it'd be nice to think that after the many years of research and experimentation I've done, I’m closer to being a bit like Lindsay (though fortunately I won't be needing to find someone to slice my adrenals open, thanks!).

There could well be a place for a system that makes it easier for people like Lindsay to be heard and taken seriously. Surely there are many others who have made similar breakthroughs in understanding their own illness, but who aren't able to talk their way into medical conferences and present well enough to be listened to.

But let's not be too harsh on the experts, at least in the medical profession. It's a pretty challenging and thankless business for them, much of the time.

[onion2k]

This guy spent 11 years becoming an expert. He talked to experts. He learned from and worked with experts. All those doctors and professors in the article who helped him are experts. He found his answer in a medical textbook.

If your take is "experts are rubbish" then you have fundamentally missed the point.

[tomhoward]

Let's try not to be too black/white about this.

Different types of expertise are valid and important, and different people have different motivations for what they do and how they do it.

The key point of this article is that someone who started out as a non-expert, was motivated by his own need to overcome an illness that established experts couldn't diagnose or treat, because they didn't share his predicament.

Let's just try to appreciate that for what it is.

[tcbawo]

They way I interpreted his take was that experts can be stubborn and risk-adverse. After all, the downside risk for reputation probably outweighs the upside for a risky and unique surgery.

[mc32]

While true, many were extremely skeptical and many didn’t want to be associated with him so he had to seek out people who were willing to risk their professional reputation to help him.

[coldtea]

>Remarkable story. It's amazing how closed-minded "experts" can be.

Yes, but it's also amazing how kooky, dangerous, delusional non-experts that think they know better can be -- so their close-mindness is part of an attempt to balance that.

Just two examples that millions of people believe in: perpetual motion machines and homeopathic drugs...

[segfaultbuserr]

Yes. When an expert receives something from an non-expert outsider, statistically, it's very likely that outsiders have no idea on what they are talking about, and only a small chance that the outsider really knows something and even lesser chance that the outsider has made a groundbreaking discovery.

And from The Bullshit Principle (https://statmodeling.stat.columbia.edu/2019/01/28/bullshit-a...): the amount of energy needed to refute bullshit is an order of magnitude bigger than to produce it. As a natural result, if everything from outsiders are taken seriously, wasting 99% of time is guaranteed, so experts are trained to ignore them. Ignoring authentic insight is an unfortunately consequence, but I fail to see how the problem can be solved.

Also, the issue of expert vs. non-expert and insiders vs. outsiders are different. You can be an outsider who rejects established technical dogmas or institutional power structure, while still being an expert in terms of knowledge (although whether someone is being recognized as an expert is a social-political question, but let's idealize), and you're very likely to be rejected from the academia, however, on the other hand, the combination of "non-expert" + "outsider" makes people don't even take you seriously.

[robbiep]

it’s an inspiring story for sure, and a good reminder to experts to curb their arrogance and keep an open mind. It’s also worth noting that by about midway through the process he was largely an expert in the field, and who cares if he was self taught. The professors and surgeons who listened to him obviously thought he was competent enough to listen to his ideas and act with him.

The last thing the world needs, however, is more armchair experts declaring that their opinion is greater than someone else’s knowledge. That, after all, is how we’ve ended up with anti vaxxers, a resurgence in largely cured infectious diseases, and many other medical and social ailments of our modern age (politics anyone?)

[tcj_phx]

> That, after all, is how we’ve ended up with anti vaxxers, a resurgence in largely cured infectious diseases, and many other medical and social ailments of our modern age (politics anyone?)

Medicine is great when it works, but sometimes it causes the diseases they supposedly treat.

Psychiatry is a case study in ideological capture resulting in iatrogenic illness. My girlfriend was misdiagnosed, but since they use the courts to force her to take the drugs that actually make people suicidal (common result of anti-psychotics) and die of liver failure (my aunt's friend), there's no way for her to escape.

The tragedy of Psychiatry is that the physiology of the conditions are largely understood, but this understanding didn't reach the practitioners working with patients.

People are drawn to "alternative medicine" when their mainstream medicine practitioners shrug their shoulders. In the United States, standard insurance-based medicine is a wealth-transfer operation: it's fantastically expensive approach to rendering needed services.

[robbiep]

Medicine, as an applied science, consists of a spectrum of fields between areas that are largely ‘engineering’ and areas that are largely ‘art’. Surgery, for the most part, is something more like engineering/science, where we have most of the answers and don’t have to modify practice too much in response to new knowledge; Psychiatry is still largely art. Frankly, making an argument for the failings of medicine based on psychiatry is like blaming a 2 year old for not being toilet trained.

I agree that people are drawn to alternative medicine when they can’t get answers from doctors. And I am a vocal advocate both inside and outside of medicine for the failings of the system. For example, if I turn up to the GPS office and sit in a room of sick kids with paint peeling off the walls to be seen by a disinterested doctor for 15 minutes who sends me away without giving me a deifinitive answer to my questions/concerns; then later go to an alt-Med quack with a water fountain in the waiting room, incense burning and she spends 45 minutes with me listening to my problems, who am I going to come back to, especially if I derive benefit (there are studies showing that practitioner engagement and active listening are for many common ‘modern’ presentations highly effective)

Part of this is the modern world has produced people who are so healthy and generally well off compared to our forebears that the moment they develop an ache or pain they fear the sky is falling and demand an answer.

And medicine doesn’t have answers, or maybe not the answer these people want, because most of these things are just the process of growing old in and of itself - people are externalising their existential angst on a system that was designed to treat sick people, not the walking well.

For example, of the 17 patients I treated in the emergency department on my last 2 shifts, 9 of them should have never even turned up to the department. They had nothing wrong with them, or nothing that staying at home, resting and using some common sense wouldn’t have fixed. Yet there they are demanding answers to questions that our forebears would have considered part of life; and which in any regard we can’t fix anyway.

I don’t work in the US but the system there is so fucked that I wonder how long until it contributes to a broader breakdown in society; healthcare is a basic human right and you’re right the wealth transfer aspect of it is disenhartening and concerning.

[PyroLagus]

> Psychiatry is a case study in ideological capture resulting in iatrogenic illness. My girlfriend was misdiagnosed, but since they use the courts to force her to take the drugs that actually make people suicidal (common result of anti-psychotics) and die of liver failure (my aunt's friend), there's no way for her to escape.

Psychology is kind of a special case, since there's often no physical evidence of the condition. You're just going by what you see and hear from the patient. Add to that the replication crisis, which is especially bad in the field of psychology, and you'll get a lot of things you think are proven but really aren't. And of course then there's the added issue of the justice system in your case. While already being punitive in general, they also use forced therapy and institutionalization as a punitive measure rather than a protective one used only in emergencies. Other fields of medicine don't have these problems (except for the replication crisis to some extent).

> The tragedy of Psychiatry is that the physiology of the conditions are largely understood, but this understanding didn't reach the practitioners working with patients.

That's also one of the problems. Practitioners aren't required to keep up with new research (maybe in some jurisdictions they are? I'd be interested to know), so many work on obsolete knowledge. I'd assume that many very specialized doctors like brain surgeons do keep up somewhat, but GPs most likely don't. It probably depends on their workplace as well. This one is common to all fields of medicine.

> Medicine is great when it works, but sometimes it causes the diseases they supposedly treat.

I'd say that's usually not the case (i.e. vaccines won't give you the disease they should protect you from), but psychology is special once again. With psychotherapy, patients can feel pretty vulnerable, and a bad therapist can make things worse by exacerbating existing mental disorders or even inducing new ones. Psychiatry works with lots of double-edged medications. A good psychiatrist will work with their patients to find the right medication and dosage, but a bad therapist may just prescribe whatever they think is right and disregard the patients opinions.

[sfkdjf9j3j]

Unfortunately, for every "outsider" with a legitimate idea, there are hundreds more emailing designs for time machines to physicists or selling homeopathic products.