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

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141–150 of 188 posts

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

#141
post #124

Earlier quoted context omitted.

Man deserves true freedom. To self diagnose if one so desires, to kill oneself through incorrect prescriptions if one so desires. The thing is, none of the rules you mention exist to stop patients from doing anything. Rather, they exist to protect desperate patients from con artists selling (sometimes literally) snake oil "cures". I'm reminded of accredited investor rules -- which also chafe at times, but are equally…

This is correct. Am MD and agree fully. GP clearly hasn't thought through all the implications of his statement.

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

#142

Earlier quoted context omitted.

As usual this is the result of gatekeeping in the medical industry. It is typical of this industry to kill a million people through inaction to avoid killing one through action. As a bonus, by arrogating the exclusive right to drug prescription and analysis to themselves they can charge what they want. Man deserves true freedom. To self diagnose if one so desires, to kill oneself through incorrect prescriptions if on…

That's all fine and dandy until the moment where you self-medicate, take your car, faint at the wheel and kill a family of four.

That’s all fine and dandy until, lacking medication, you faint at the wheel and kill a family of five. Five being greater than four it is clearly worse not to allow for self-medication.

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

#143

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…

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.

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

#144

Earlier quoted context omitted.

As usual this is the result of gatekeeping in the medical industry. It is typical of this industry to kill a million people through inaction to avoid killing one through action. As a bonus, by arrogating the exclusive right to drug prescription and analysis to themselves they can charge what they want. Man deserves true freedom. To self diagnose if one so desires, to kill oneself through incorrect prescriptions if on…

That would be very helpful if I knew how to treat myself, or if some of the alternatives I might try were as safe as I should desire for experimentation. If anything, hare-brained attempts by loiscenced physicians at treatment with antibiotics, which left me with tinnitus, have made me very skeptical of any treatment until it's properly explained why I should agree. But I will leave that fight for when anyone can com…

And that is a choice you can make for yourself. It is good that no one demands you treat yourself, only that you have the option.

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

#145

Earlier quoted context omitted.

As usual this is the result of gatekeeping in the medical industry. It is typical of this industry to kill a million people through inaction to avoid killing one through action. As a bonus, by arrogating the exclusive right to drug prescription and analysis to themselves they can charge what they want. Man deserves true freedom. To self diagnose if one so desires, to kill oneself through incorrect prescriptions if on…

Fortunately almost all drugs can be ordered online without prescription, at least those that are also in India. For larger amounts of money you could even order a custom synthesis in a Chinese lab.

Amusingly, I have fast access to this pipeline (one of my childhood friends owns a generics manufacturer in India). But for tests, etc. sadly I am constrained to American gatekeeping unless I physically transport myself.

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

#146
post #136

Earlier quoted context omitted.

>> it can be parsed as such that they are a genetic modification of a viral cell > No, it cannot be parsed like this. “Genetic modification” has a specific, technical meaning and mRNA vaccines do not perform it. Furthermore, I’m not even sure what you mean by “viral cell”, since viruses don’t form cells (they form virions). Do you mean a host cell infected by a virus? Because that doesn’t apply here: mRNA vaccines do…

> A modification in the frame of mind of genetic understanding is performed on a viral cell. Let me be frank: this sentence is nonsense technobabble. > A segment of viral genome which encodes part of the body viral is excised and modified. No, this does not happen (even ignoring that I don’t know what “body viral” means). > Indeed if you review my words you'll note that I explicitly address the lack of a defect. And…

>> A modification in the frame of mind of genetic understanding is performed on a viral cell.

>Let me be frank: this sentence is nonsense technobabble.

>> A segment of viral genome which encodes part of the body viral is excised and modified.

>No, this does not happen (even ignoring that I don’t know what “body viral” means).

"Body viral" is an allusion to terms like "body politic" and the practice of recycling that turn of phrase in other ways. It was intended to sarcastically and self-depreciatingly refer to my misapplication of the word "cell" to virii. I make no claims on the quality of the allusion.

As I understand things: The SARS-CoV-2 genome contains a sequence that expresses a spike protein. To make the mRNA vaccines,that sequence was excised. I assume that the excision was done by genetic sequencing, so it wasn't excised from any particular virion but rather by an excision from the genome, one abstraction further up. Then the sequence is modified to change the protein that is expressed – a form that was taken from the physical construction of a virus – and modified again to allow delivery for replication in human cells.

To do something in a certain frame of mind means to see it from that perspective and to use a particular understanding to do it. I wake up in the morning and kiss my fiancee; I do that in the frame of mind of love, not from the frame of mind of facio-mandibular biomechanics. I sit down at my computer and make it do things, and I do that in the frame of mind of abstraction and symbolic manipulation. Or in the frame of mind of blowing up starbases and killing mans.

In my experience, any discussion between two entities that have an uncertain degree of mutual legibility is bound to become philosophical and fuzzy. I've also long since learned to express myself as I think and as I see. Therefore I stand by my words that a modification in the frame of mind of genetic understanding is performed on a virus.

>> Gene editing or genome editing is […]. Note the distinct concept from gene therapy

> I hold a PhD in genomics.

That's nice.

> You do not need to explain basic molecular biology to me.

Indeed I edited my comment to properly frame my message that this is the information on Wikipedia. Thanks for the quick response though! Please note that nowhere in this discussion is basic molecular biology being explained to you – at least I myself have interacted with the discussion as if it were about the ambiguity that plainly exists in the term "gene therapy" as carried in people's minds, and how that harmful ambiguity might have come about.

>> Even if only from the perspective of how information on Wikipedia can be construed by the layman - such as myself.

> Then I humbly suggest that your understanding of the subject matter as a layman is — evidently — fragmentary, and insufficient for making up your own definitions and claiming them as being equally valid as those of experts.

Nowhere have I claimed any of my words to hold as a definition, and wouldn't do so. This is a discussion in a comment section on Hacker News. Between parties with little known common ground. I'd like to repeat the term "charitable interpretation". Furthermore, I am going to do you the favor of understanding your statement that I am "making up my own definitions and claiming them as being equally valid as those of experts" as a common and minor utterance of insincere hostility rather than it being based in delusion.

Finally, it is my opinion that from the higher education I have received I derive a duty to explain and enlighten, and no rights or entitlements.

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

#147

This rings true. I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it seems like most doctors operate under “you have symptoms, I order a few tests, they were negative, guess we’ll never know, fuck off lol”. It sucks. I hope these families make progress.

I've often remarked that if I (as an IT specialist) did my work the way most doctors do theirs - with the same arrogance and dismissal of my clients - I would be out of a job. I put more care and diligence in diagnosing the malfunction of a single machine, one that can just as easily be thrown in the trash and replaced at a cost of a few thousand dollars, than a GP does dismissing an irreplaceable person's bloodwork with "you're too young for cancer". Yes, sure, the scale is completely different, the subjects are completely different, but is this not why doctors are so highly paid and specialised? Whenever you have something that's even slightly exotic it's like you're dealing with the world's worst classifier and need to average the result of several of them to get a meaningful reading.

Personally, I've been diagnosed with Gilbert's Syndrome. Which is basically "your liver doesn't fully process dead red blood cells, you're one of the people where it just be like that". It's not a severe condition - I just get a bit yellow sometimes, but a diagnosis of "it just be like that" is not really a diagnosis, is it? The real diagnosis would be "you have such and such gene that causes such and such enzyme to not be synthesised in the required amount leading to your liver not processing bilirubin". Obviously most people won't need or want a diagnosis that detailed, but why not let those who do want it pay for it? Let me pay you to take better care of my health...

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

#148
post #131
post #121

Earlier quoted context omitted.

We dont, but we act like we do - Most doctors will try SSRI first despite most knowing they only work for about a third and most doctors will refuse to treat depression using non SSRI antidepressant medication.

Doctors usually try SSRIs first because they are inexpensive, well tolerated in most patients, and often effective. If the patient doesn't respond then most doctors are willing to try alternatives.

In my experience, the patient can seem content because their outbursts of whatever kind have decreased in regularity, and they're more neutral on...everything.

It also seems to disconnect them from some portion of mental model creation (as in, learning and understanding day to day inputs), lowering overall executive function, causing some to slowly spiral into disorganization, perhaps bad habits, perhaps general nihilistic tendencies, without realizing it — especially those who have been prescribed these and have nobody to objectively weigh how the med is striking them, and assist with coming to the correct dosage.

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

#149

> 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…

We don’t routinely test for strep, neither do we routinely order blood cultures. Without seeing the entire picture, it’s hard to otherwise comment on the care this patient received.

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

#150

Earlier quoted context omitted.

That's all fine and dandy until the moment where you self-medicate, take your car, faint at the wheel and kill a family of four.

That’s all fine and dandy until, lacking medication, you faint at the wheel and kill a family of five. Five being greater than four it is clearly worse not to allow for self-medication.

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