I wonder if organizations with a living founder who has a specific disease are more effective at investing for cures.
Michael J Fox helps cures Parkinson’s:
Augie Nieto with ALS:
Bedridden for 11 years, he discovered a surgery for his adrenal condition
21–30 of 147 posts
Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition
#22Remarkable 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."
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.
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.
Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition
#23Remarkable 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."
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.
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.
Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition
#24Remarkable 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."
>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...
Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition
#25I wonder if organizations with a living founder who has a specific disease are more effective at investing for cures. Michael J Fox helps cures Parkinson’s: https://www.michaeljfox.org/ Augie Nieto with ALS: https://augiesquest.org/
Reminded me of this comment I encountered on HN [1]. Leo Szilard invented his own Cobalt 60 treatment and cured himself [2]
[1] https://news.ycombinator.com/item?id=11334660 [2] https://en.wikipedia.org/wiki/Leo_Szilard#Cancer_diagnosis_a...
Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition
#26I don’t understand why it took so long for him to get this diagnosis. Elevated adrenaline levels are easily tested for in a simple catecholamine blood test. That test is among the basic panel done when one sees an endocrinologist. It may not have pinpointed his adrenal medulla as the problem, but it should have pointed them in that general direction very early on.
Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition
#27Earlier quoted context omitted.
No it's not, adrenal fatigue is when you cant produce enough hormones primarily cortisol What he has is "bilateral adrenal medullary hyperplasia. In layman's terms, it means the medullas, or inner regions, of his adrenal glands were enlarged and acting like tumors. His adrenal glands were producing way too much adrenaline."
But why couldn't the endocrinologist check via a blood test that he was producing too much adrenaline?
I imagine we have received the crib notes of this story.
He was able to improve his condition by being on a permenant norad infusion, which is something we only do in hospitals to critically ill patients who are having a hard time keeping their blood pressure in any normal range. Generally, norad is a shorter acting version of adrenaline that acts on a slightly different hierarchy of the same receptors. If it was as simple as ‘too much’ adrenaline, I suspect some benefit effect would have been seen by beta blockers. Maybe there is, maybe that’s one of the 9 medications he takes every day.
Worth noting also that a condition that dumps way too much adrenaline into the body, phaeochromocytoma, is often an incidental finding; so this obviously presents differently despite having (simplistically, from the article) the same type of mechanism.
We don’t have all the information we need to make inferences from this particular article
Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition
#28Remarkable 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."
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.
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.
Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition
#29Earlier quoted context omitted.
No it's not, adrenal fatigue is when you cant produce enough hormones primarily cortisol What he has is "bilateral adrenal medullary hyperplasia. In layman's terms, it means the medullas, or inner regions, of his adrenal glands were enlarged and acting like tumors. His adrenal glands were producing way too much adrenaline."
But why couldn't the endocrinologist check via a blood test that he was producing too much adrenaline?
Simple... why would the endocrinologist check for that? Much of modern medicine is “I see A with B, so I test for C, maybe D and E.
Once your out of stuff you can think to test for modern medicine doesn’t start throwing tests at the wall to see what sticks... it shrugs its shoulders and gives up.
Now sometimes this is good (hypochondria + psychosomatic problems) but sometimes this is bad... failure to get a diagnosis due to skipping something they didn’t think of.
This is why I always tell people who are unsatisfied with the handling of their medical problems to get a second opinion, a third opinion, as many opinions as it takes. If your doctor says they don’t know why something hurts... ask another one. At some point you should press for referring to a specialist... even if it’s a damn psychiatric specialist because they think it’s in your head... when they check you’re not crazy, that’s one less excuse they have for ignoring your problems.
That’s what this person did here. Eventually the only opinions left were the ones they had to dig up on their own. Sometimes this path even involves researching new (or old/forgotten/misunderstood) but at the end of the day this is how hard it is to understand how the body actually works.
It’s one of the reasons I’m so thankful for my reasonably good health. There’s a nearly infinite number of ways the body can be broken or damaged, the fact is we only understand a small part of the most common things that go wrong and can fix an even smaller number of the things we do understand.
Edit to pre-empt criticism of affordability of this approach: I live in Australia where we have public healthcare so everyone can see a doctor (or twelve) without being driven into bankruptcy.
Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition
#30Remarkable 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."
> 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...
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.