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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

#71

Post by joshuaissac »

jdthedisciple wrote: post #57
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…

mRNA vaccines are not gene therapies.

https://www.genomicseducation.hee.nhs.uk/blog/why-mrna-vacci...

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

#72

Post by xorcist »

There's just so much we don't know about our bodies and how they behave. Adolescents are extra difficult because there's just so much going on. That doesn't mean every theory out there is correct.

Even without any subject matter knowledge, I can't help but to note that if you have a bunch of kids with strange symptoms, and put them on any cure for a number of months and even years, you would expect to see a few miraculous recoveries. That type of data is completely absent in the article, we're just given a few anecdotes, which would otherwise have helped us understand the reactions from the medical establishment.

The named person seems to have been constantly on antibiotics for over four years, and still has remissions sometimes as often as monthly. How that is interpreted as proof that an highly atypical strep infection is causing the symptoms remains unexplained.

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

#73

Post by Pyramus »

nappy wrote: post #39
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…

This is a well understood concept in medicine, and a central part of the drug approval process.

Yes and no.

Yes, obviously the drug development process is very complex and a lot of thought goes into interactions at the N=1 level.

However, we are hardly at the point where drugs are developed for individuals, based on their genetic makeup. The best we can do (with exceptions) is design drugs for women/men, and this is a very recent development. In addition, per definition, a drug can only be effective/safe at the population level.

To make a very simple example, we think caffeine sensitivity has two distinct high/low genotypes. As a result, all recommendations of caffeine consumption will either be too high or too low.

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

#74

Post by Pyramus »

jdthedisciple wrote: post #57
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…

Parent's argument of the interactions between individual and population effects is not related to the current Covid vaccines (i.e. only trivially so, like any other vaccine/drug).

In fact, because the population size in the phase 3/4 trials of the current Covid vaccines is several times larger than most drug trials (current and past ones), relative to almost all other drugs you should have a preference for the vaccines (given risk similar risk profiles).

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

#75

Post by jdthedisciple »

joshuaissac wrote: post #71
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…

mRNA vaccines are not gene therapies. https://www.genomicseducation.hee.nhs.uk/blog/why-mrna-vacci...

Depending on the definition, they are or aren't. There seems to be a disagreement. https://www.google.com/amp/s/www.swfinstitute.org/news/83947...

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

#76

Post by viraptor »

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…

> Why do we take it as a given that antidepressants should help all of these sub-populations equally?

Do we? Antidepressants are a whole class of things. We've got a few options, which indicates we don't expect equal effects. Same with painkillers. Same with statins. Same with migraine medication. These work for the similar problems but depending on the person you will use different one. Sometimes you'll even just cycle through them if you don't see the effect of the previous one.

I think you're starting with a wrong assumption there.

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

#77

Post by tremon »

Auracle wrote: post #29
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".

How about “your test came back too low, but I’m not even going to think about treating you because you don’t fit the profile.” You beg to at least be referred to a specialist. The specialist all but laughs you off but agrees to test again. The test comes back even lower. You then have to ask the “specialist” for a specific treatment because you apparently know more than he does. I’ve never had a good experience with…

This is my father's experience with his hematologist. He presented around 2000 with symptoms of fatigue and shortness of breath. He got bypass surgery a year or so later, but his condition never improved -- he wasn't even fit enough to complete the (very light) physical therapy recommended after surgery.

Eventually, he started compiling his own bloodwork and measurements in an Excel sheet and could correlate the severity of his symptoms with the red blood cell count in his blood, but was rebuffed every time. After urging from us, he finally asked to be referred to a different specialist, and one of the first things he asked her was: "can my symptoms be explained from this blood work?", and he was very happy and relieved when she said yes.

In all, it took ten years after his first symptoms to be diagnosed with MDS [1]. He's gone now, but at least his last years were better than the ten before that. To this day, we don't know if his bypass surgery was a necessary intervention.

[1] https://en.wikipedia.org/wiki/Myelodysplastic_syndrome

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

#78

Post by Cthulhu_ »

maybelsyrup wrote: post #16

> Rita thought back to the winter. She couldn’t remember Timothy coming down with a sore throat, but just before the ski trip she had noticed that the skin around his anus looked a little red. U wot m8 This is a ten year old. My parents were not inspecting that particular feature of my anatomy at that age. What's going on here

There's quite a few Remarks I have about this article.

One, obvious privileged family; family ski trips, hiring someone to look after their son, and of course being able to pursue loads of health care in the US.

Then there's this line:

> They would rent a car with no back doors, sedate him with Benadryl, and drive him overnight to the child psychiatric unit at UCLA.

I mean what? I get that you want to get your kid to a university psychiatric clinic, but surely there's ways to do that that don't look like a covert midnight kidnapping? And the similar kidnapping / removal from the hospital, which is their right of course, but the article saying they needed a "plan" to get him home is worrying language.

Then a chiropractor - already a debatable medical field that doesn't require medical training that seems to attract middle class folk - confirming a very rare neuroinflammatory disease.

Also pretty sure a 14 year old wouldn't say things like "I’m seeking absolution" I'm pretty sure a strep infection would show up in bloodwork. I dunno, seems like it would be one of the standard things to look for?

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

#79

Post by [deleted] »

maybelsyrup wrote: post #43
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. It's actually a bit worse than this, and that's saying something. Have a look at this article from 2019 summarizing the lay of the land in research on mental health treatment: https://pubmed.ncbi.nlm.nih.gov/31474241/ There's…

[deleted]

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

#80

Post by dsego »

Aerroon wrote: post #24

> Conventional psychiatric drugs and talk therapy are backed up by decades of robust scientific evidence. While it's true that there's plenty of evidence for 'conventional' psychiatric treatment working, the problem is with how it works in practice. There are few real objective tests involved and patients are prescribed various drugs to try to see if some of them would help. I'm surprised psychiatrists don't have dar…

> I'm surprised psychiatrists don't have dartboards in their office to decide on what to use.

Who's ever had to deal with your run-of-the-mill psychiatrist knows this is true. They guess dosages, a dash of lexapro, a smidgeon of zyprexa, a pinch of xanax and let's see if the desired effects are there. Oh and remember that there's been no conclusive evidence about any permanent side effects like sexual dysfunction and penile atrophy /s.

My father's psychiatrist even did a reset protocol, where she cut all medication for a few days and started over with new meds, she just didn't have a clue at what was happening.

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