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A boy, his brain, and a decades-long medical controversy

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Re: A boy, his brain, and a decades-long medical controversy

#171

Post by dang »

deltaonetwo wrote: post #89
catblast01 wrote: post #56

Earlier quoted context omitted.

> Thus homosexuality must be an recent anomaly as an evolutionary trait as it would have naturally selected itself out eons ago if it was a natural trait. All this wall of text proved is that your verbal skills are tedious and you’re bad at math.

Careful. There are real world consequences for anyone who attacks me on HN. Either state your disagreement and address me in a civil way or be prepared for the consequences.

Obviously you can't threaten other users. We've banned this account.

https://news.ycombinator.com/newsguidelines.html

Re: A boy, his brain, and a decades-long medical controversy

#172

Post by didibus »

Broken_Hippo wrote: post #81
didibus wrote: post #11

> Conventional psychiatric drugs and talk therapy are backed up by decades of robust scientific evidence. This is not true, he notes, of the typical PANDAS therapies. I think my issue with conventional psychiatric drugs and talk therapy is that they are what Tylenol is to a headache, they don't actually cure the condition, they simply mitigate the symptoms. So it's clear that conventional psychiatry has no clue of th…

I think my issue with conventional psychiatric drugs and talk therapy is that they are what Tylenol is to a headache, they don't actually cure the condition, they simply mitigate the symptoms. The same is true of insulin, though, and many, many other drugs. Somethings just slow down a disease (drugs for autoimmune disorders often do this). I find it completely unfair to expect everything to be a cure: Treating sympto…

I don't think I negated anything about that. But here you've got a situation where a treatment that appears to cure a condition, and which has a root cause explanation of the problem, and addressing the root cause shows remission of the symptoms. And yet they are struggling to find funding for more research into it.

Now personally, I think research should prioritize those leads over some other brain numbing pill.

Also, I do think it's very different in psychiatry. Your example of insulin for diabetes is very different than my example of Tylenol for a headache. We know that your pancreas is failing to produce insulin, we often know why it is, but we can't repair it, so we need to manually do the job that it should be doing, and that will restore your body to a more normal state. It isn't a cure, but it also isn't simply masking symptoms, it's taking over the functions of the body through some other mechanism, for which we understand the bodily function well enough to supplement them ourselves.

I don't believe psychiatry is at this point. We don't know why you have schizophrenia, we don't even know what in the body or brain is wrong, we simply observe symptoms, and we find that some pills which have effect on your brain mitigate your symptoms, often by producing other mental changes that distract from them. That's a farcry from our understanding of diabetes and its treatments.

Re: A boy, his brain, and a decades-long medical controversy

#173

Post by didibus »

kayodelycaon wrote: post #138
didibus wrote: post #11

> Conventional psychiatric drugs and talk therapy are backed up by decades of robust scientific evidence. This is not true, he notes, of the typical PANDAS therapies. I think my issue with conventional psychiatric drugs and talk therapy is that they are what Tylenol is to a headache, they don't actually cure the condition, they simply mitigate the symptoms. So it's clear that conventional psychiatry has no clue of th…

> I think my issue with conventional psychiatric drugs and talk therapy is that they are what Tylenol is to a headache, they don't actually cure the condition, they simply mitigate the symptoms. Which works for a lot of people. We don't know what causes a number of mental health issues. Research is being done but a lot of it hasn't gone anywhere. The human body is complex and there are firm ethical limitations to wha…

> We have use what works with the evidence we have because there isn't a better solution for people who need help now

Except in the case of the article, where there is an alternative that shows promise to a better solution, but struggles to find funding or legitimacy, where the reason it struggles to find legitimacy is because of "lack of data", where the data can't be created because of "lack of funding" justified by "lack of legitimacy".

So one of my criticism is in the priorities.

My second criticism is in the lack of acknowledgement of how primitive our mental health understanding and treatments are. I feel there should be more humility there. Yes a psychiatrist has studied hard for many years, but after those many years of studies, they should still be able to say, even after all this hard work studying, I cannot tell you what you have, why you have it, and how to fix it, but I can help you through a process of trying various drugs that have various effects to hopefully find a mixture that helps you cope with your disease.

And I understand that doctors are wary of other people selling snake oil, someone else saying well I know what you have and can cure it, and then go in to explain things with made up stuff and provide unproven treatments. But at the same time, the humility should create a curiousity around all such claims, what if they are on to something, after all, we know that we don't know, what can we do to know more? Especially when such claims are made by medical researcher in the fields like in this article.

Re: A boy, his brain, and a decades-long medical controversy

#174

Post by deltaonethree »

catblast01 wrote: post #169
deltaonetwo wrote: post #162

Earlier quoted context omitted.

https://www.scientificamerican.com/article/massive-study-fin... It's not rejected. Homosexuality is rejected as a medical "disorder" by the medical establishment. However that's entirely different from what the anthropological and biological community thinks about the origins of homosexuality. It may not be a "disorder" but no one is sure whether it's biologically "normal." Right now the real conclusion is inconclusi…

> It may not be a "disorder" but no one is sure whether it's biologically "normal." This is not a legitimate question to be answered and therefore has no scientific or research merit, so stop dragging biologists into it. How do you define “normal”? Once you have picked a suitable definition, what do you intend do to with that information? Your linked article asks the questions about the genetic origins of homosexuali…

>This is not a legitimate question to be answered and therefore has no scientific or research merit, so stop dragging biologists into it.

Stop dragging biologists when a biologist was attached to the research study I sent you? Makes no sense.

>Your linked article asks the questions about the genetic origins of homosexuality, which has fuckall to do with your own invented concept of “normal” or “disorder”.

All conceptions of the terms "disorder" and "normal" are invented concepts and highly opinionated. Humanity at one point called Homosexuality a disease and at another time they called it normal. That is simply a choice of definition.

Regardless of the semantic pedantry you're trying to bring up here, you know what I fuckall mean by the terms. If homosexuality is proven to have no genetic basis and is only a recent phenomenon, then it is not biologically normal. Simple.

>Your whole premise is bollocks. You’re convinced that you have some enlightened thought exercise here but you really need to get your head out of your own ass. We get what you’re trying to say - but it’s too stupid to argue against.

You know it's actually not MY premise. It's well established that this is inconclusive in academia.

Why the hell do you think the genetic origins of homosexuality was researched at all if it was definitively considered to be normal and genetic? The problem is INCONCLUSIVE hence the research study.

You need to realize you are not arguing with me. You are arguing with established opinions in academia.

The fact that you're a doctor makes me question the scientific neutrality of doctors in the field. Are all of them as biased and emotional as you?

Re: A boy, his brain, and a decades-long medical controversy

#175

Post by deltaonethree »

rscho wrote: post #167
deltaonetwo wrote: post #165

Earlier quoted context omitted.

> This statement that docs consider their patients dimwits is wrong. It may be true for some docs I disagree. I feel this is true for over 50% of docs in my anecdotal experience. Of course in surveys 0% of docs will admit to this so we can't really prove it either way. >You may be a researcher in the area but you are also a very pretentious one. Yeah I dropped that bomb because people were calling me ignorant. I usua…

I did read all of your answers. From them, I was at least able to understand that you've got a personal problem with docs. No shame in that, many people are the same. That must be part of a bias such as those that you talk about so often. Now, you associated "I am a researcher in that field" with "docs think their patients are inferior beings". So, how about a reference supporting your statement? Or were those statem…

>I did read all of your answers. From them, I was at least able to understand that you've got a personal problem with docs. No shame in that, many people are the same. That must be part of a bias such as those that you talk about so often.

Could be true. I don't think it's personal though. I think doctors have a real problem. But then again that could be just my bias. Hard to determine it either way. You can't prove it's bias any more than I can prove it's not.

I will say my thoughts apply exclusively to US doctors as my experience has solely been with them. Additionally the exorbitant costs and comparative worse quality of care then their European counterparts could exacerbating my bias if bias is what's going on here.

>Now, you associated "I am a researcher in that field" with "docs think their patients are inferior beings". So, how about a reference supporting your statement? Or were those statements accidentally associated?

I didn't make this association at all. I stated I'm a researcher in the field to give more credibility to an example I made that was used to illustrate a point.

This association was accidentally invented by you.

I do think that subconsciously US docs think of their patients as less intelligent and they tend to dismiss the opinions of the patients and just solely rely on their training to arrive at a predetermined conclusion. This has nothing to do with my background at all.

Also can we get off of my background? My background should have nothing to do with what I'm talking about here.

Re: A boy, his brain, and a decades-long medical controversy

#176

Post by deltaonethree »

rscho wrote: post #93
deltaonetwo wrote: post #52

Earlier quoted context omitted.

The problem with this is that there is zero evidence that the filtering and testing requirements correlate with actual doctoring skills. In fact there is evidence against this. Think of it this way; in Europe it is far easier to become a doctor then in the US due to significantly less stringent requirements. However in Europe and other 1st world countries treatment and other quantitative measures on quality of medica…

Americans like to believe that becoming a doctor is so much harder in the US. This is not true. I am a foreign medical grad. It is actually pretty easy to get a passing mark on your exams, and from that pov your system is not what it seems. What's hard in the US is getting into med school. But it's not that much harder than in Europe, apart from the cost of course, which acts as the major barrier in your country. In…

I actually don't know first hand. I only heard it was easier and thought it was a well known fact. Thanks to your comment I think it may just be a popular myth rather than a well known fact.

Either way if you're saying the "hardness" is the same, the conclusion still stands. "Hardness" is not the metric that is making European quality of care better than the US because both countries have the same "hardness".

Re: A boy, his brain, and a decades-long medical controversy

#177

Post by sterlind »

rscho wrote: post #115
marcan_42 wrote: post #12

Earlier quoted context omitted.

I don't understand why so many doctors seem incapable of doing research or accept research provided to them by their patients. If you have symptoms that match a condition documented in medical literature, and the doctor can't come up with a better fitting explanation, why would they reject it? It's like these people learned a subset of their field and then just refuse to ever learn anything new.

Doctors are not here to do research. It's not their job. Yes, this means usual care always lags behind research by years or at least the time to formulate guidelines. No, you'll accomplish nothing trying to force the hand of clinicians in doing stuff they're not educated to do or understand. Have a weird condition? Sorry, but most of the time you'll be out of luck. And there isn't really anything planned in our healt…

wait, if you're a researcher, and a doctor, but you say doctors are not here to do research.. isn't that a contradiction?

I think you're right that most doctors don't do research, but doctors publish papers all the time. if I look at a surgery journal I'll see articles by surgeons. my doctor isn't like, in the lab running tissue assays, but he'll try experimental things when no clear-cut treatment exists, see if they succeed or fail, and adjust his practice accordingly.

also, dismissing people with "weird conditions" as "out of luck" is a pretty crappy thing to do. I can understand not having enough time or background to handle those cases, but I sure hope you're referring those people to someone who can rather than giving up on your patients because you can't be bothered.

Re: A boy, his brain, and a decades-long medical controversy

#178

Post by rscho »

sterlind wrote: post #177
rscho wrote: post #115

Earlier quoted context omitted.

Doctors are not here to do research. It's not their job. Yes, this means usual care always lags behind research by years or at least the time to formulate guidelines. No, you'll accomplish nothing trying to force the hand of clinicians in doing stuff they're not educated to do or understand. Have a weird condition? Sorry, but most of the time you'll be out of luck. And there isn't really anything planned in our healt…

wait, if you're a researcher, and a doctor, but you say doctors are not here to do research.. isn't that a contradiction? I think you're right that most doctors don't do research, but doctors publish papers all the time. if I look at a surgery journal I'll see articles by surgeons. my doctor isn't like, in the lab running tissue assays, but he'll try experimental things when no clear-cut treatment exists, see if they…

One can have 2 jobs. I'm not saying that no docs do research, but I'm insisting that caring for people and doing research are two different jobs that have nothing in common. The fact that the two are so poorly separated in practice is damaging to both science and patients.

What people don't understand is that modern medicine is not centered around the practitioners but around precise guidelines that are both medically and legally binding. When I say that you're out of luck, it's not to spite anyone. If a competent clinician specialist examined a case and sees no way out, going to the big fish professor will not benefit you otherwise than maybe entering a study, because from a reasonable clinical pov there are really many conditions for which we can only offer support.

So sometimes, no one "can". But clinicians are not expected to use creative thinking, and that's the very best medical evolution since the past century. It's the job of researchers to read science papers and formulate the guidelines to be transmitted to clinicians. You REALLY should not be doing that all by yourself as a practitioner.

Re: A boy, his brain, and a decades-long medical controversy

#179

Post by pas »

midjji wrote: post #116

Such a long story with so much "evidence" only to fall at the very basic hurdle of the very first anecdote. Untreated or not, no one has a strep infection for five months. So no matter what else, its at least not that which the antibiotics treated. If taken at face value, it seems more likely that its the anti-inflammatory properties of the antibiotic that helped. For context - the story and the condition and treatme…

.. yes! This was the biggest empirical component, and ... what's going on? If it is Strep. shouldn't it be visible in a CSF (spine fluid) sample? PCR?

edit: https://www.pandasppn.org/flowchart seems pretty decent. the article paints an excessively mysterious picture, but this seems easy. also IVIG is relatively cheap and safe for kids and only one course is needed (and seems to work).

Re: A boy, his brain, and a decades-long medical controversy

#180

Post by rdiddly »

rdiddly wrote: post #143
jdthedisciple wrote: post #57

Earlier quoted context omitted.

I agree with you and I'd even go as far as to say the same applies to novel vaccines or mRNA gene therapies: Yes, those may be effective for most people, but for others with certain preconditions, these may prove to be detrimental. In fact, we have seen this happen, such as increasing numbers of myocarditis in young males after getting their biontech shot. Point being, a little scepticism and reluctance in taking new…

Pfizer/BioNTech gave me tinnitus, which is probably permanent. It's an experimental vaccine that hasn't gone through the full testing & approval process. This was the warning I received from the doctor who obtained my consent for the shot. Was she a horrible anti-vaxer from the "other side" then? Everybody calm down, open your minds and leave the "culture war" to Twitter.

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