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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

#51

Post by bigcorp-slave »

s5300 wrote: post #34
bigcorp-slave wrote: post #14

Earlier quoted context omitted.

Yes, and that’s not it. Unfortunately my constellation of symptoms does not seem to match any single entity. I have basically resigned myself to thinking that I may have an unusual genetic immunological or neurological defect. Think (this list is not exclusive or constant, and I go through multi-month cycles of subsets of these symptoms - all of them new onset since getting sick): - assorted chest and abdominal pain…

CSF leak?

That is a very interesting idea. The migraines do seem to be getting better with time, which would track that… but it’s been years!

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

#52

Post by deltaonetwo »

nappy wrote: post #46
pintxo wrote: post #32

Earlier quoted context omitted.

A) Think IT Support suddenly exposed to a knowledgeable user B) Just like IT Support, doctors abilities are distributed on a bell curve. We all hope that the curve is leaning to the right, but I think the jury is still out on that one.

The filtering, testing requirements, and frankly unpleasantness involved in medicine (in the United States) not only drives the curve to the right, but also lops off a good portion of the left side of the curve of all of those who want to become physicians.

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 medical care beat the US by a far margin.

It shows that the "unpleasantness" is pushing something to the right of the bell curve. However it is clearly not pushing "effective medical diagnosis and treatment" to the right of the curve as Europe is beating us on that front with far less stringent requirements.

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

#53

Post by deltaonetwo »

Auracle wrote: post #27
LudwigNagasena wrote: post #13

Earlier quoted context omitted.

That’s because 99% of patients who do their own research come up with some crazy ideas.

I find that if you go in to an appointment with a peer reviewed study printed out things will go better for you. It’s a good way to signal “I did my own research, but not on YouTube.”

This is ingenious and a incredible way to display how illogical a doctor (and people in general) can be.

It's completely obvious that the doctor isn't going to really read the paper (he's too busy). You just present a paper and suddenly the doctor will trust you more. Literally it's deference to Authority being employed by the doctor here; nothing going on with rationality or logic.

Don't present a single logical argument to the doctor. If that argument, however logical, goes against traditional medical knowledge you will be dismissed. The key is to forget about logic and use an authoritative approach.

I'm betting the actual contents of those research papers don't even matter. You can print out a completely bogus study, just make sure it looks legit.

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

#54

Post by tudorw »

Auracle wrote: post #27
LudwigNagasena wrote: post #13

Earlier quoted context omitted.

That’s because 99% of patients who do their own research come up with some crazy ideas.

I find that if you go in to an appointment with a peer reviewed study printed out things will go better for you. It’s a good way to signal “I did my own research, but not on YouTube.”

Yes, approach as teamwork and be humble about what you bring to the table, making it clear you are aware that you are a layperson, and that you are also not the first to go off and think you've found something googling, after that I brought spreadsheets to my appointment, summaries of abstracts and links together with the protocol for the test I believed I required. Eventually, after one GP moved on to study drug gene interactions and another retired I was able to get the gene test I had hypothesised may reveal an underlying cause and I was correct.

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

#55

Post by deltaonetwo »

missblit wrote: post #19
unanswered wrote: post #15

Earlier quoted context omitted.

You actually get tests? Consider yourself lucky. For me it's just "I don't recognize those symptoms. Symptom A and symptom B are never known to go together so I'll just ignore B, and there are no tests for conditions which cause A, so fuck off lol".

Hickam's Dictum: A man can have as many diseases as he damn well pleases.

I propose another dictum. Call it Delta's dictum.

Only a doctor has the intelligence and super human ability to claim that a man has a disease. The man himself is too ignorant and stupid to know anything about his own disease.

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

#56

Post by catblast01 »

deltaonetwo wrote: post #45

You don't know the extent of human bias. All humans are ruled more by bias than by logic, doctors included AND you included as well. What's especially worse is that Doctors are trained to mistrust a patient. They view patients as lower ranking simpletons so they trust established knowledge more than they trust a patients description of an anomaly. The key here that you have to realize is that what the doctors are doi…

> 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.

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

#57

Post by jdthedisciple »

cowmoo728 wrote: post #33

There seems to be an assumption underlying medicine that things must be true at the population level for them to also be true at the individual level. I think medicine is picking its populations wrong. Example: the skeptical doctor in the article notes that "strep infection is extremely common in children, accounting for as many as a third of all sore throats—but you don’t see droves of kids with abnormal behavior cr…

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 stuff like that is always warranted and noone should be ostracised for that.

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

#58

Post by bserge »

marcan_42 wrote: post #12
sterlind wrote: post #10

Earlier quoted context omitted.

hEDS, the disorder I have, is somewhat controversial like PANS is. the symptoms include hypermobility (overly flexible), spontaneous joint dislocations, widespread pain, joint degeneration, easily damaged skin, fatigue, immune dysfunction and tachycardia. ~2% of the population is hypermobile, but healthy, and don't have those symptoms. hEDS is known to be heritable, but the genes haven't yet been identified. many doc…

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.

Yes, it's a job. Very few actually care about their field. And if they started accepting their patients' research (most of which will be riddled with errors, sadly), they wouldn't get anything done.

It sucks, but as with any human system, the majority has priority, minorities have to wait for their turn (and/or actively fight for it).

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

#59

Post by [deleted] »

nappy wrote: post #46
pintxo wrote: post #32

Earlier quoted context omitted.

A) Think IT Support suddenly exposed to a knowledgeable user B) Just like IT Support, doctors abilities are distributed on a bell curve. We all hope that the curve is leaning to the right, but I think the jury is still out on that one.

The filtering, testing requirements, and frankly unpleasantness involved in medicine (in the United States) not only drives the curve to the right, but also lops off a good portion of the left side of the curve of all of those who want to become physicians.

[deleted]

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

#60

Post by crooked-v »

deltaonetwo wrote: post #52
nappy wrote: post #46

Earlier quoted context omitted.

The filtering, testing requirements, and frankly unpleasantness involved in medicine (in the United States) not only drives the curve to the right, but also lops off a good portion of the left side of the curve of all of those who want to become physicians.

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…

For example, the current residency process in the US demands regular 80-100 hours weeks[1] for years, and was designed by a man who was basically high on cocaine 24/7 and expected the same out of all doctors.

[1] It's supposed to be legally limited to 80, but ask around and it's obvious that even that limit isn't properly enforced.

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