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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

#101

Post by BeFlatXIII »

leesalminen wrote: post #6
bigcorp-slave wrote: post #2

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.

Most doctors today seem to memorize and execute flowcharts and leave creative thinking in undergrad. Anything that deviates from the norm results in “fuck off lol”.

I wonder how much of that is because of the “All A’s at all costs” mentality that is necessary to get admitted to merry school in the first place selects against creative problem solving. It’s like they took “if you hear hoofbeats, think horses instead of zebras (unless you’re in Uganda)” and then forgot that exception while on a metaphorical vacation to Uganda.

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

#102

Post by [deleted] »

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…

[deleted]

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

#103

Post by inglor_cz »

deltaonetwo wrote: post #82
inglor_cz wrote: post #61

Earlier quoted context omitted.

I am not offended, but I am not convinced that your logic holds. Humans are not solitary animals. We live in groups and are subject to evolutionary pressures that favor traits advantageous to survival of groups . Perhaps having a certain percentage of gay or asexual people helps the entire group survive better. Maybe it is an archaic form of division of labor? Some individuals will specialize on breeding, others on g…

This wasn't the point. The example was a device to throw people off guard and pull them back for the purpose of promoting self awareness. Personally, I have no stance on the causative origins of homosexuality; But judging from the replies I'm afraid it might have been too successful and pulled people too deep into that cancel culture frame. Think about it this way. Yes, Social groups can evolve with a percentage of h…

"Another thing to consider is, why did you address my example instead of addressing my main point? "

Because I felt like it, that is all. I am interested in similar topics.

I think people generally underestimate how non-straightforward natural selection is, especially when epigenetics is taken into account. Living beings carry around a lot of dormant genes that can spring to life under specific conditions.

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

#104

Post by AnthonBerg »

klmr wrote: post #94
jdthedisciple wrote: post #75

Earlier quoted context omitted.

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...

No, it doesn’t depend on the definition. This isn’t a point of contention amongst experts. The article you cite is simply wrong (in particular, its claim about the classification of mRNA vaccines as gene therapy in Europe is categorically false), it fundamentally misunderstands how mRNA vaccines work, and it misrepresents the sources it cites supposedly in support.

The swfinstitute.org link aside, there are different ways to define the term. It isn’t jthedisciple who is making the definition; It is a simple fact that there are two major definitions on the Wikipedia entry for gene therapy:

Gene therapy is a medical field which focuses on the genetic modification of cells to produce a therapeutic effect [1] or the treatment of disease by repairing or reconstructing defective genetic material. [2] — https://en.wikipedia.org/wiki/Gene_therapy

[1] – Kaji, Eugene H. (7 February 2001). "Gene and Stem Cell Therapies". JAMA. 285 (5): 545–550. https://doi.org/10.1001%2Fjama.285.5.545 – ISSN 0098-7484. PMID 11176856.

[2] Ermak G (2015). Emerging Medical Technologies. World Scientific. ISBN 978-981-4675-81-9

—

mRNA vaccines are certainly a more ambiguous fit under the term “gene therapy”, but it can be parsed as such that they are a genetic modification of a viral cell to produce a therapeutic effect. With slightly more ambiguity but not at all without reason, we can parse mRNA vaccines as “the treatment of disease by reconstructing genetic material”. Even if the definition includes the word “defective”. To me the crux of the statement does not appear in the genetic material needing to be “defective”. Via metaphor: We may be unprotected from the elements by our shelter being defective, but it may also occur that shelter is simply missing, such as our immune response to SARS-CoV-2.

I personally wouldn’t call mRNA vaccines gene therapy, but it’s more because it can induce misunderstandings on permanence rather than because of the un-parseability of the smaller term under the larger definition.

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

#105

Post by Pyramus »

mewpmewp2 wrote: post #64
checkyoursudo wrote: post #62

Earlier quoted context omitted.

It seems like there is a bit of an overestimation of what medicine can do. I don't know if that overestimation is by physicians, patients, society-at-large, everyone? It feels like we are barely out of the dark ages when it comes to medicine. My brother died at a fairly young age (30s) because nobody could figure out what was wrong with him over the course of a couple of years. Specialists investigated a lot of diagn…

I think we are leagues out of dark ages, but it doesn't mean we are perfect or anywhere near perfect, or that it would even be possible to be perfect in the field of medicine. People like to think that some X has the perfect answer to any problem we might face, but in fact we don't have answers to very many problems. The ability to solve various problems is not binary.

Interestingly both statements are true. We are both in and leagues out of the dark ages.

On average we have progressed tremendously over the last 200 years, say. That means for many diseases, we have made extraordinary progress, as evidenced by life expectancy.

At the same time there are many diseases where we are simply touching the surface and have a very basic (maybe even incorrect) understanding. An example that comes to mind is we still don't know why we sleep. We have good guesses, and we are excellent at observing sleep and curing many related diseases. But why do we spend 1/3 of our lives asleep? We don't know.

In other words, progress is not distributed uniformly over diseases.

(On a different note, the dark ages weren't actually as dark [1].)

[1] https://news.ycombinator.com/item?id=19740489

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

#106

Post by AnthonBerg »

klmr wrote: post #100
AnthonBerg wrote: post #95

Earlier quoted context omitted.

We should strive to take jthedisciple’s comments at face value, and literally. From there we will arrive at a charitable interpretation. Here is an example where Harvard Stem Cell Institute discusses mRNA therapy as gene therapy: https://hsci.harvard.edu/translation/what-are-drugs-4-gene-t... The Wikipedia entry on gene therapy discusses mRNA therapy under the Non-viral section: https://en.wikipedia.org/wiki/Gene_the…

> Here is an example where Harvard Stem Cell Institute discusses mRNA therapy as gene therapy: https://hsci.harvard.edu/translation/what-are-drugs-4-gene-t ... And the very next paragraph (in its heading, no less) makes it clear that RNA therapies and gene therapies are distinct , i.e. that RNA therapies are not (necessarily) gene therapies. The Wikipedia article you cite doesn’t mention mRNA vaccines. The single men…

I assure you thay we are in technical agreement! I’d like to point towards my words on mRNA vaccines precisely and purposefully not modifying the genome.

Re. this: ” And the very next paragraph (in its heading, no less) makes it clear that RNA therapies and gene therapies are distinct, i.e. that RNA therapies are not (necessarily) gene therapies.”

For the avoidance of doubt and my greater understanding, may I ask for a quote of paragraph being referred to?

Edit, update: That paragraph aside, the article index does indeed distinguish between RMA therapy and gene therapy: https://hsci.harvard.edu/translation/what-are-drugs

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

#107

Post by cgio »

bigcorp-slave wrote: post #49
cgio wrote: post #44

Earlier quoted context omitted.

Not a doctor, just being anecdotal. Any wheezing? I have most of these issues from hay fever/allergy, and just mentioning it because I was not even looking into it as as option. Especially if symptoms occurred after moving, changing environment (I had moved to a different country). Some of those could also be the outcome of others, feedback with others, medicine you take to address them etc., e.g. chest pain and pani…

No wheezing. I’ve had a full allergic workup and am negative to everything. No medicine to address the panic attacks - I have a beta blocker for if things get really bad but I try to avoid taking it and have only taken maybe three in the last two years. I actually am getting ready to move back to where I lived before I got sick on the off chance that that helps.

Thought you might have checked already. Wish you the best, I know first hand how such a combination of symptoms can feel debilitating but you obviously do all you can about it and that’s the most important thing.

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

#108

Post by klmr »

logicchains wrote: post #97
joshuaissac wrote: post #71

Earlier quoted context omitted.

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

It's been found that through reverse transcriptase it's actually possible for the RNA from covid infections to be integrated into the genes: https://pubmed.ncbi.nlm.nih.gov/33330870/ . If covid itself can do it, can the mRNA vaccines do it too?

These findings are probably spurious and caused by artefacts of their methods rather than real. In particular, the preprint you’ve linked to had glaring methodological flaws [1]. A revised version of the article [2] has addressed some, but notably not all of these flaws.

More importantly, though, all the paper shows is that under specific lab conditions (which are distinct from conditions in living cells!), viral RNA might integrate into the host genome (subject to the caveats about artefacts). In particular, it requires active retrotransposons [3], which are elements that are inactive in cells in the body. Unless a virus brings its own retrotransposon (and SARS-CoV-2 doesn’t), it can’t integrate into the host genome. But even if SARS-CoV-2 did, they mRNA vaccine definitely doesn’t include a retrotransposon.

[1] https://www.biorxiv.org/content/10.1101/2021.03.05.434119v1 [2] https://www.pnas.org/content/118/21/e2105968118 [3] https://twitter.com/GeneticsMike7/status/1404927629812240388

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

#109

Post by AnthonBerg »

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...

jthedisciple does not make the claim that mRNA vaccines are gene therapies – note the or: “the same applies to novel vaccines or mRNA gene therapies“

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

#110

Post by eqvinox »

> A few old papers in the literature had piqued Rapoport’s interest. [...] Thomas Sydenham, the 17th-century English physician who first described the condition, called it Saint Vitus’ dance, after the dancing manias that emerged in continental Europe during the Black Death, when large groups of people, sometimes thousands at a time, would cavort in the streets until they collapsed from exhaustion.

Curious. In Germany, this condition ("Veitstanz"), while not in "common" knowledge, is at least in the "grandparent's random wisdom" set. Without the modern separation into Chorea Sydenham and Chorea Huntington, but still.

Does anyone know more about the cultural context of this in English-speaking cultures? Do you know the terms "St. Vitus' dance" or "dancing plague"?

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