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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

#111

Post by klmr »

AnthonBerg wrote: post #106
klmr wrote: post #100

Earlier quoted context omitted.

> 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…

Title: “Manufacturing gene and RNA therapies” “A challenge for both gene and RNA therapies is getting the nucleic acid molecules into a cell. […]”

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

#112

Post by AnthonBerg »

klmr wrote: post #111
AnthonBerg wrote: post #106

Earlier quoted context omitted.

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…

Title: “Manufacturing gene and RNA therapies” “A challenge for both gene and RNA therapies is getting the nucleic acid molecules into a cell. […]”

Thank you! I want to explicitly state my agreement, due to the sensitivity of nuance here.

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

#113

Post by klmr »

AnthonBerg wrote: post #104
klmr wrote: post #94

Earlier quoted context omitted.

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 gene…

> It is a simple fact that there are two major definitions on the Wikipedia entry for gene therapy:

I read this as a single definition rather than two distinct ones but, regardless of how you read this, mRNA vaccines do neither of these two things.

> 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 don’t specifically act on infected cells, they act on healthy cells.

> we can parse mRNA vaccines as “the treatment of disease by reconstructing genetic material”

Again, we cannot do this, because it’s flat out incorrect. What does “reconstructing genetic material” even mean in this context? There’s no defect, so there’s nothing to reconstruct, and the mRNA vaccine does not do so anyway since, again, it does not modify the host genome.

— In general I’ll note that several sentences in your answer simply make no biological sense and use made-up terms.

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

#115

Post by rscho »

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.

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 healthcare systems to help you. And frankly, people coming into my practice wielding science papers often understand neither what they read, nor that they are asking for an impossible thing. The best I could do if your claim seems realistic is to refer you to a specialist in the matter, but never ever would I act solely on the basis of research papers. And that's because I am a researcher myself, so I know how unreliable that is.

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

#116

Post by midjji »

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 treatment seems quite similar to the story of chronic neuroborreliosis. Which has consistently failed to be detected and treated in replication studies.

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

#117

Post by ptsneves »

crooked-v wrote: post #60
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…

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.

Not only in the US, Europe is the same(Portugal and Spain at least). It is absolutely ridiculous to expect life critical care from people who are working those hours. No other critical profession would even dare having those hours(pilots, drivers, etc) yet it is expected that doctors are somehow super humans. I think that is what they want to imply, as well as get boatloads of money on demand due to pay per hour.

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

#118

Post by Aerroon »

dsego wrote: post #80
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…

>My father's psychiatrist even did a reset protocol, where she cut all medication for a few days and started over with new meds

That can be quite brutal when it comes to some drugs like venlafaxine. The withdrawal symptoms from that are awful. Some psychiatrist don't seem to think that the meds they prescribe can have withdrawal symptoms when you stop.

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

#119

Post by rscho »

pintxo wrote: post #32
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.

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.

Think of IT support suddenly encountering their 10th script kiddie of the day. That's a more relevant image.

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

#120

Post by rscho »

ptsneves wrote: post #117
crooked-v wrote: post #60

Earlier quoted context omitted.

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.

Not only in the US, Europe is the same(Portugal and Spain at least). It is absolutely ridiculous to expect life critical care from people who are working those hours. No other critical profession would even dare having those hours(pilots, drivers, etc) yet it is expected that doctors are somehow super humans. I think that is what they want to imply, as well as get boatloads of money on demand due to pay per hour.

No, what they imply is 1.that if you're not certified, you're essentially a slave labourer and 2.that long hours are essential to get enough training to become good.

The big problem is that 2 is true.

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