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 crowding emergency departments and psychiatric clinics in late winter and early spring." But what if a more complex chain of events, or a genetic or immunological abnormality, is necessary to go from strep -> psychiatric episode? Meaning that there might be a very small sub-population of children for whom strep has a chance of causing these symptoms.
I also see this thinking erroneously applied to other psychiatric disorders like depression. Antidepressants seem to help some people, and not help some other people. Averaged over the entire population, they appear to have a mild positive effect. But there could easily be multiple causes of depressive symptoms, based on genetics, diet, behavior, drug use, and past trauma. Why do we take it as a given that antidepressants should help all of these sub-populations equally?
To take it to an extreme, there are many causes of blindness. Giving vitamin A to someone who lost his eyes in a car crash will clearly not help, even though vitamin A can "cure" blindness in some people. If we ran a double blind trial of vitamin A as a cure for blindness, it would almost certainly fail at the population level because blindness caused by vitamin A deficiency is a very small sub-population of all blind people.
> 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.
That really isn’t true: medicine as a field does not have this assumption, and rare disease research is a thing (and it’s commonly acknowledged that “rare diseases”, taken together, aren’t rare at all). In fact, rare disease research is providing acute clinical diagnosis and sometimes cures for highly individual cases. Personalised medicine is probably the fastest growing subfield in medical research.
Your example of antidepressants underlines this: it’s in fact widely acknowledged that, while antidepressants on average only have a very mild effect, they can be very effective (or, conversely, not effective at all) for an individual, and they are actively prescribed with this in mind. Contrary to what you’ve claimed, no expert assumes that antidepressants have a uniform effect across subpopulations.
However, treating each disease as a completely individual case just isn’t feasible at scale, and is usually also not appropriate. So the first anamnesis will always focus on common diseases, and rightly so.
It can be witnessed as a central part of the drug approval process, certainly. However, sometimes the lack of this perspective can also be noticed during the interpretation of scientific results. The perspective is not consistently part of the discourse.
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.
> 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.
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.
SSRI have severe sideffects, but mostly of the kind that doctors strangely seem to think of as harmless, such as the well known and quite common loss of sexual interest, which kills quite a few relationships. Even worse there is growing evidence that it occasionally causes a permanent reduction or loss of sex drive. The group who self identify as asexual have almost all been prescribed SSRI as young teens, and this might well be causation, not correlation. After all, if you got SSRI as a kid and then never felt your sex drive before it was permanently lost, how would you know?
SSRI are almost mostly ineffective, with roughly 70% not responding at all. They were however heavily marketed as the patented, and very expensive prosac for decades and more importantly while they occasionally treat depression, they feel bad to use and are never used recreationally, and thus avoided the moralizing around drugs. Not to say the marketing wasn't needed, people were highly sceptical of using chemicals to treat depression, especially as people occasionally melted from serotonin storm before they figured out dosages and cross interactions.
Doctors are restrictive in which alternatives they try, not because they are afraid of side effects, but because off label use requires personal responsibility, and is often against policy one way or other. Good alternative treatments include hallucinogens, in particular ketamine and peyote in large single dose treatments when not taken in a clinical setting but with friends. These have long been avoided despite good evidence they work astonishingly well for depression. This is partly because of the war on drugs propaganda and moralizing, but mostly because these hallucinogens cannot be patented, meaning its not worth the price for the large manufacturers to do the marketing to overcome the anti drugs propaganda. Its not random chance that they are currently trying chiral variants, partial ingredients and various anti hallucinogens and treatment schedule combinations of these, despite all evidence so far indicating its all worse than the well studied plain unpatentable medicine.
Another example is Amphetamines which in typical doses prescribed to children with adhd treat the primary observable downside of depression i.e. low energy, low focus, loss of work, reduced activity, etc. Unsurprisingly, the subgroup of depressives which respond well to exercise roughly a third, respond very well to treatment with amphetamines. As anyone who ever considered maybe working out, but not really wanting to, and then took amphetamines will tell you. With amphetamines, its almost certainly not a direct treatment of the depression, rather it facilitates changing habits in such a way that a common pathway out of depression is more likely to be taken. They have a significantly increased likelihood of suicides compared to hallucinogens, but the effect is comparable to that of SSRI. The main sideeffect of therapeutic/low doses of amphetamines is weight loss, a mostly desired outcome. So excluding people with easily tested for heart problems and trivial to identify anorectics, why not try it... Well its war on drugs propaganda again...
Doctors have a nasty habit of thinking they should make the judgement regarding the tradeoff between various treatment, instead of presenting the options to the patient and letting them decide. But the real problem is idiotic moralizing around "drugs :O".
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.
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).
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.
The NHS article states "The mRNA from the vaccines does not enter the cell nucleus or interact with the DNA at all, so it does not constitute gene therapy."
The article you have posted explains what gene therapy is confidently, but it doesn't explain, or reference particularly well, why an mRNA would be considered gene therapy or why it would alter genes.
The Wikipedia entry on gene therapy discusses mRNA therapy under the Non-viral section: https://en.wikipedia.org/wiki/Gene_therapy – “BioNTech, Moderna Therapeutics and CureVac focus on delivery of mRNA payloads, which are necessarily non-viral delivery problems.”
Indeed the mRNA vaccines carry a genetic payload – a segment of viral genome which is modified using a genetic perspective and from a position of genomic understanding. mRNA is a temporary and deliberately non-permanent message carrier substrate; Here too, humanity’s employment of such facts can be interpreted as scientific knowledge of the matters of the genes. If we choose to call mRNA vaccines gene therapy – which they are less clearly than other techniques – then it is certainly the better gene therapy for purposefully avoiding permanent alteration of the genome in the subject to be treated.
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 mention of “mRNA payloads” does not necessarily refer to vaccines (there are other RNA therapies, and some of these might be gene therapies, although I don’t think they are) — but even if it did the sentence’s inclusion in this article is debatable at the very least.
Fundamentally, gene therapies always work by modifying the host genome. mRNA vaccines don’t do this (nor do any other RNA therapy approaches that I’m aware of).
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?
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.
> 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.
>> 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.
I was ambiguously referring to virions as viral cells. Better I hadn't! - thank you - but I think I can be understood nonetheless.
A modification in the frame of mind of genetic understanding is performed on a viral cell. The modification is done from the perspective of an understanding of how genes, genetic material, and genetic processes such as transcription and protein encoding work. A segment of viral genome which encodes part of the body viral is excised and modified.
Then, carried on this understanding, a therapeutic effect is produced.
>> 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.
Indeed if you review my words you'll note that I explicitly address the lack of a defect.
The mRNA vaccines we know today can certainly be viewed as a modification and reconstruction of viral genomic material. Of viral RNA genes. Per Wikipedia: "In biology, a gene is a basic unit of heredity and a sequence of nucleotides in DNA or RNA that encodes the synthesis of a gene product, either RNA or protein." — https://en.wikipedia.org/wiki/Gene
In mRNA vaccines, the modification of the viral gene and its replication on a large scale can certainly be viewed as a reconstruction of genetic material. And it's made possible by a deep understanding of genes.
According to Wikipedia, gene or genome editing is "is a type of genetic engineering in which DNA is inserted, deleted, modified or replaced in the genome of a living organism". Note the distinct concept from gene therapy – as things currently stand on Wikipedia, however imperfect Wikipedia is, fundamentally. https://en.wikipedia.org/wiki/Genome_editing
> — In general I’ll note that several sentences in your answer simply make no biological sense and use made-up terms.
Maybe I've just read too much Martin-Löf and am getting overly comfortable with the abstract but I'm not worried about my ability to express my thoughts. As I'm sure you're here to build understanding, I'd like to ask you to point towards the terms you experience as made-up and the sentences that don't make sense to you. I think that is the best course of action if I am to learn anything. Otherwise I might be tempted to take it that what we are experiencing is less a lack of meaning and more a lack of comprehension.
Or to make an honest suggestion, how about we stay on topic in polite discussion and charitable interpretation?
Then in closing, I feel like I am compelled to highlight my repeated use of terms like "ambiguous" and "can be parsed". I also want to repeat that personally I wouldn't call mRNA vaccines gene therapy. We are in more general agreement too: I agree that the terms should be used as you describe. However, they can be and are used ambiguously. We are all the better for understanding this extant ambiguity, not least because the nuance and ambiguity are being abused in order to manipulate people.
Even if only from the perspective of how information on Wikipedia can be construed by the layman - such as myself.
> 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 yet you use the term “reconstruct”. — Reconstruct what?
> The mRNA vaccines we know today can certainly be viewed as a modification and reconstruction of viral genomic material.
This sentence becomes somewhat true if we use “information” instead of “material”. But that has nothing to do with gene therapy (as you seem to acknowledge yourself later!?).
> Gene editing or genome editing is […]. Note the distinct concept from gene therapy
I hold a PhD in genomics. You do not need to explain basic molecular biology to me.
> 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.
>> 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.
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.
> 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 the root causes, and doesn't yet understand what exactly in the body or brain causes the symptoms. In that sense, I feel anything that can show a return to "normalcy" and has a root cause explanation, should be considered very seriously and researched deeply, over what simply mitigates symptoms.
> The long-term use of antibiotics especially worries him, because it could contribute to the problem of drug-resistant bacteria. This is still the mainstream position: The most recent edition of the Red Book, an exhaustive guide to childhood infectious diseases published every three years by the American Academy of Pediatrics, goes out of its way to recommend that children with PANS and PANDAS symptoms not be given an extended course of antibiotics.
That's a valid concern, but I feel someone curious (like me), just has to wonder, well why are the antibiotics needed for so long? What is it here that prevents them from actually getting rid of strep in the brain? Maybe there are alternatives to just permanent antibiotics dosing.
> 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:
There's a link inside to a free full text version of the article. I encourage you to explore the citations in the paper, too, they lead down some fun rabbit holes.
Keep in mind too that the authors largely stay away from the potential iatrogenic harms of both prescribed psychotropics and talk therapy, both of which are terribly under-researched.
That objection in particular (contributes to drug-resistant bacteria) seems deliberately obstructive. People all over the world are being overdosed with antibiotics. These few children with this issue are a drop in the ocean of antibiotic use. It is cruel and venal to throw that excuse in the way of a possibly effective therapy.
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.
The same is true of insulin, though, and many, many other drugs. Somethings just slow down a disease (drugs for autoimmune disorders often do this).
I find it completely unfair to expect everything to be a cure: Treating symptoms doesn't make the drugs bad. Treating symptoms is better than not treating them - this helps people not suffer. Actual cures are much, much harder to come by, especially when we don't know what causes them or what to fix to cure them.
Medicine doesn't have to be perfect or ideal to be helpful.
I don't think I negated anything about that. But here you've got a situation where a treatment that appears to cure a condition, and which has a root cause explanation of the problem, and addressing the root cause shows remission of the symptoms. And yet they are struggling to find funding for more research into it.
Now personally, I think research should prioritize those leads over some other brain numbing pill.
Also, I do think it's very different in psychiatry. Your example of insulin for diabetes is very different than my example of Tylenol for a headache. We know that your pancreas is failing to produce insulin, we often know why it is, but we can't repair it, so we need to manually do the job that it should be doing, and that will restore your body to a more normal state. It isn't a cure, but it also isn't simply masking symptoms, it's taking over the functions of the body through some other mechanism, for which we understand the bodily function well enough to supplement them ourselves.
I don't believe psychiatry is at this point. We don't know why you have schizophrenia, we don't even know what in the body or brain is wrong, we simply observe symptoms, and we find that some pills which have effect on your brain mitigate your symptoms, often by producing other mental changes that distract from them. That's a farcry from our understanding of diabetes and its treatments.
> 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.
Which works for a lot of people. We don't know what causes a number of mental health issues. Research is being done but a lot of it hasn't gone anywhere.
The human body is complex and there are firm ethical limitations to what methods we can use to understand it. Experimenting on people is fraught with hazards and abuse.
We have use what works with the evidence we have because there isn't a better solution for people who need help now.
> We have use what works with the evidence we have because there isn't a better solution for people who need help now
Except in the case of the article, where there is an alternative that shows promise to a better solution, but struggles to find funding or legitimacy, where the reason it struggles to find legitimacy is because of "lack of data", where the data can't be created because of "lack of funding" justified by "lack of legitimacy".
So one of my criticism is in the priorities.
My second criticism is in the lack of acknowledgement of how primitive our mental health understanding and treatments are. I feel there should be more humility there. Yes a psychiatrist has studied hard for many years, but after those many years of studies, they should still be able to say, even after all this hard work studying, I cannot tell you what you have, why you have it, and how to fix it, but I can help you through a process of trying various drugs that have various effects to hopefully find a mixture that helps you cope with your disease.
And I understand that doctors are wary of other people selling snake oil, someone else saying well I know what you have and can cure it, and then go in to explain things with made up stuff and provide unproven treatments. But at the same time, the humility should create a curiousity around all such claims, what if they are on to something, after all, we know that we don't know, what can we do to know more? Especially when such claims are made by medical researcher in the fields like in this article.
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 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 diagnoses. I don't know if it was rare or they just missed things or what. We'll never know if they could have done more or not. I heard many variations of "why can't these useless people figure this out?" And I have wondered if the answer is that, for all the advances and modern technology, we're just not that good at medicine yet, not really.
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].)
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 doctors conflate hEDS with healthy hypermobility, and don't take it seriously.
I realized on my own that I met the criteria, but the first few doctors I saw wouldn't listen to me, even after my arm popped clean off my shoulder. now I have an excellent care team, but it took me a couple years of fighting to get a diagnosis.
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.
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.
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.
Science is built on deference to authority. You cannot possibly derive all known physics laws yourself, or verify all the known biology yourself. You have to trust to a certain degree all the scientists that came before you, collectively. You can question some bits here and there but you don’t have time to question everything. The doctors cannot possibly evaluate all the arguments brought in by patients, they don’t have time or even expertise to do that. But they can trust (to a certain degree) a peer-reviewed article.
And, related, “ A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” -Planck
I would say the logical thing to do for the doctor is Not to trust the patient peer until AFTER the doctor has actually read the article himself. The problem here is the doctor will likely trust the patient without ever reading the article.
There has to be some degree of verification regardless of how complex the world is. At the very least he should read the paper. Because not doing so is hypocritical. Doctors treat patients as dimwitted idiots but suddenly the patient is smart because he has a paper? No, you can't make that judgement unless you read the paper.
This article is literally about patients who followed a crazy idea and the doctors who dismissed them. The crazy people here were the doctors.
What the mother did here was more rational and logical then every doctor in the department of UCLA. Think on that, then think about the amount of money UCLA charges patients and whether or not this sort of incompetency justifies this high level of monetary compensation.
I would say all people are irrational and biased. The issue is Doctors in general think they're better than everyone. They dismiss the fact that the biases and crazy ideas that effect all of humanity could effect them as well.
I've done this and had a doctor that was kind enough to consider it. I had some mysterious symptoms and managed to find some things that I thought might fit it, and it helped him get a better idea of what I was dealing with.
He also went through and dismissed most of the more worrying possibilities, which set my mind at ease, and narrowed it down to a more likely condition.
So basically, I threw in a bunch of options and most of them were wrong. Thankfully I didn't walk in convinced that any one of them was absolutely the cause, but I imagine some patients do, and it can be a pain for the doctor.
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 filtering, testing requirements, and frankly unpleasantness involved in medicine (in the United States) not only drives the curve to the right,
What makes you think that they are filtering for good physicians? Or even filtering for those who are capable of becoming doctors?
Here in South Africa, post-1994, universities adopted a very aggressive affirmative action policy to correct imbalances of the past. While med-schools had previously been based purely on merit, post-1994 introduced quotas for each of the major race groups.
This meant that a disadvantaged-background student with a C average would often be picked over an advantaged student with an A average.
The result was still doctors who graduated, and then went on to practice. The restriction by med-schools everywhere is not because only high-performing students will survive it, it's a purely artificial restriction.
After all, if C average students pass, why not simply increase the intake?
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.
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.
The safety impact of long working hours for pilots and drivers is clear but for medical residents it's more complex. Tired doctors do make more mistakes. But in hospital care settings, serious medical errors happen most frequently in transitions of care from one doctor to another. Shorter working shifts mean more transitions.
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.
Americans like to believe that becoming a doctor is so much harder in the US. This is not true. I am a foreign medical grad. It is actually pretty easy to get a passing mark on your exams, and from that pov your system is not what it seems. What's hard in the US is getting into med school. But it's not that much harder than in Europe, apart from the cost of course, which acts as the major barrier in your country.
In fact, education and medical systems are different enough between Europe and the US that saying one is harder is very subjective. For instance, american specialists are really hyperspecialized. They often excel at what they do, and are completely ignorant of other fields. Europeans often have a much broader medical knowledge. They are also far less aggressive. All in all, I much prefer Europe.
I actually don't know first hand. I only heard it was easier and thought it was a well known fact. Thanks to your comment I think it may just be a popular myth rather than a well known fact.
Either way if you're saying the "hardness" is the same, the conclusion still stands. "Hardness" is not the metric that is making European quality of care better than the US because both countries have the same "hardness".
A lot of doctors don't listen to their patients. Go to almost any forum where they discuss a story like this, and you can get a ton of stories of patients (usually women) who suffered for years until they found a doctor who treated their symptoms seriously. And then you have stories like this one.https://www.thecut.com/2018/09/what-if-the-doctors-had-liste...
Know what a "double 0 doctor" is? They've got a license to kill. (I picked that up in a book by a doctor, btw.)
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).
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.
wait, if you're a researcher, and a doctor, but you say doctors are not here to do research.. isn't that a contradiction?
I think you're right that most doctors don't do research, but doctors publish papers all the time. if I look at a surgery journal I'll see articles by surgeons. my doctor isn't like, in the lab running tissue assays, but he'll try experimental things when no clear-cut treatment exists, see if they succeed or fail, and adjust his practice accordingly.
also, dismissing people with "weird conditions" as "out of luck" is a pretty crappy thing to do. I can understand not having enough time or background to handle those cases, but I sure hope you're referring those people to someone who can rather than giving up on your patients because you can't be bothered.
One can have 2 jobs. I'm not saying that no docs do research, but I'm insisting that caring for people and doing research are two different jobs that have nothing in common. The fact that the two are so poorly separated in practice is damaging to both science and patients.
What people don't understand is that modern medicine is not centered around the practitioners but around precise guidelines that are both medically and legally binding. When I say that you're out of luck, it's not to spite anyone. If a competent clinician specialist examined a case and sees no way out, going to the big fish professor will not benefit you otherwise than maybe entering a study, because from a reasonable clinical pov there are really many conditions for which we can only offer support.
So sometimes, no one "can". But clinicians are not expected to use creative thinking, and that's the very best medical evolution since the past century. It's the job of researchers to read science papers and formulate the guidelines to be transmitted to clinicians. You REALLY should not be doing that all by yourself as a practitioner.
I have that too. It took ~25 years from first symptoms to diagnosis. I think part of the problem is that it's likely an umbrella term covering a variety of similar but not necessarily related conditions.
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”.
And believe it or not, that's actually very good for patients on average. That's how we came out of authoritarian medicine to get into evidence-based medicine.
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.
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 an endocrinologist.
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.
I had one good endocrinologist, then she moved away. Since then it's just doctors looking at numbers and be like "numbers are low so you're fine", despite being tired all the time.
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 one so desires.
People foolishly say “If only the doctors would see my illness as an illness” not realizing they exist in a false prison. Doctors should not stop you from treating yourself. You are sovereign over your body. Never let them rule.
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 essential for protecting people from scams.
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.
I mean, isn't that just status quo bias? You can come up with a story for how anything will result in negative consequences. If we didn't have medical gatekeeping you could just as easily come up with a story about how requiring people to get approval from a doctor to treat themselves could result in someone fainting at the wheel and killing a family of four, and it'd be just as meaningless as this.
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.
But it's incredibly more likely than if left to themselves, people will self-medicate, and not necessarily with due research beforehand.
To give an example: in my country, 56% of people have already medicated with homeopathy (a known scam for decades). Imagine if they could just buy any other medication, which unlike homeopathy, could have strong secondary effects ? Those 56% people who have "illnesses" with very benign symptoms that for most cases cures itself in a couple days without any drugs (homeopathy is used for anything, common cold, headaches, itches, you name it ...), now they're potentially taking much more dangerous meds. So it's clearly not equivalent as 56% of people definitely don't have "faint-at-the-wheel" symptoms today.
The existence of side-effects affects how many people will take the drug. I don’t think the zero side-effect situation illustrates anything any more than giving away your product for free tells you how many people will buy it.
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 come up with a plausible option.
In my case, it is a combination of persistence, a small number of excellent specialists who believe me, and willingness to spend tens of thousands of dollars.
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...
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
- thoracic spine pain
- migraine
- panic attacks, and strong palpable sensations of anxiety
- sleep disturbances
- blurry vision
- one-sided facial numbness and pain
- tachycardia
- fatigue
- nausea
- difficulty concentrating
- muscle fasciculations
Some days I feel great, some days I’m virtually incapacitated. Hundreds of tests and years of specialists later we have found an assortment of minor things but nothing that really explains it. I’ve even entertained the idea that it’s all psychological but years of therapy have given me techniques to control the panic attacks, but not stop the physical sensations that kick them off.
This sounds somewhat similar to symptoms I am having. Currently on a 5 month journey trying to get a diagnosis.
I have abdominal pain, headaches, high blood pressure with periodical orthostatic hypertension (my blood pressure goes up in the standing position; it is supposed to go down), tremors, tachycardia, fatigue, difficulty concentrating, constipation or diarrhea, severe sleep disturbances, muscle spasm and cramps, hot flushes, cold hands and feet, and I have some episodes of euphoria, panic attacks and paranoia.
Same as you I have some days where I feel just fine.
I have had the same experiences as you when it comes to doctors, they do a lot of tests, the tests come back inconclusive and then they just shrug. At least I have a nice GP that says that he has no clue what is wrong with me but that something is definitely wrong.
So far we have done a lot of blood work, various urine and stool samples, CT-scan and MRI of abdomen. The only thing they have been able to find so far is slightly elevated noradrenaline/norepinephrine levels (three times) and some cysts on my left kidney.
The elevated noradrenaline could be because of a pheochromocytoma (adrenaline producing tumor), but when I have done the 24-hour urine test for that it comes back negative.
The only thing that I have found to work is to eat a low tyramine diet which seems to greatly reduce the symptoms, though not completely remove them.
It might not be the same as you are having problems with, but I do see a lot of similarities.
My email is in my profile, let me know if you want to compare notes.
Yes, definitely. I will email you after work today. I have also been evaluated for a pheo with negative results - the sudden panic attacks out of nowhere seem to trigger this diagnostic pathway.
I will try to reduce dietary tyrannies - that is a good idea.
Few thoughts come to mind in case you haven’t already come across them yourself:
1. Unlikely but testing for sleep apnea, just to rule out since I’ve heard people with strange constellations of symptoms find improvement this way.
2. Testing for neurological autoimmunity - a paraneoplastic panel, neuronal antibody panel, anti-nmda receptor. There are a number of panels depending on the lab for these with some overlaps between them just check what they cover. These can be hard to obtain you need a doctor who groks them. Also can be expensive and sometimes difficult to have insurance cover but that’s usually helped if the doctor groks it.
3. A small fiber punch biopsy. (See Therapath for info, may also find a talk on YouTube called Small Fibers Big Problems by Dr Oaklander)
4. Investigate ME/CFS (probably already have) and dysautomomia (autonomic neuropathy, possibly indicated if biopsy positive).
5. I’ve just put my email in my bio. If you’re US based and want a recommendation for some helpful neurologists who can look for this stuff send me an email.
Have you been checked for any autoimmune diseases?
Sounds like it could be something like Celiac disease.
From what I've seen, most of those are potential Celiac symptoms. But I imagine other autoimmune diseases could also cause these types of symptoms.
This graphic [0] shows some potential Celiac symptoms. A guy surveyed a bunch of people with Celiac for their symptoms and listed the symptoms given more then once. The orange ones are the most commonly given and many of your listed symptoms would fall under the orange ones.
The abdominal pain is especially what makes me think it could be Celiac vs. other autoimmune diseases or something else.
That is an interesting proposal. I do have one autoimmune disease, that from reading the entire body of research literature is not known to cause a large majority of my symptoms. But I do hear that autoimmune diseases travel in herds… will look into it. Thank you!
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 panic attacks or puffers/adrenaline and palpable anxiety.
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.
find another dr for better thoroughness, but no offense... dont take advice from random internet people pushing you to check for a specific disease without having seen a single symptom.
I think this is sort of due to necessity. A country's health system, like all organizations, is resource constrained and must provide the maximum benefit it can to society with what it has, especially for public health systems
> “That’s a made-up disease,” she recalls the doctor saying.
This is an unfortunate consequence of physicians treating many patients with underlying psychiatric problems. They want a diagnosis (or in some cases are drug-seeking) and they leverage these syndromes in order to get the attention or drugs they're after. The syndromes are poorly understood and are only relevant if you can rule out several other possible explanations using tests. If a physician treats 100 patients claiming to suffer from $SUPER_RARE_SYNDROME maybe ninety nine have a history of claiming other unique diseases. It's too easy to sweep the level-headed patients in with the crackpots. "House, M.D." was an interesting and compelling drama but there's no way you could devote the kind of time to investigate interesting cases like that.
This was identical to my story as a child/teenager. Went through multiple doctors for a year or two. It was finally diagnosed as PANDAS. A few months of antibiotics and about 6 months later I returned to normal. Still functional as of many years later. I’m glad this is being solved and caught earlier.
This story hits home a bit for me. I had a severe case of mononucleosis at 18. After a month of being bedridden I developed a tic (muscle spasms and sometimes a tssk sound made with my mouth). I saw a lead tic specialist in my area and they said "odd, but will probably go away in a couple months". It's been almost 10 years. They happen sometimes weeks between but normally one or two a day. It has obvious trends with stress and drinking and strong emotions. I'm pretty at peace with it but I still find some of the looks and ignorant questions a bit tiring. My family and I did research way back then when the neurologist's diagnosis was so vague, and our best guess was PANDAS. It just seem to fit. The tics are just a part of me now, and while I swear I lost some IQ from the experience as well I am happy and healthy and living my life.
From the fact that we've locked up the inventor of germ theory in a psyciatric hospital, to the recent COViD19 aerosol debacle, medicine is a bit strage.
The way the autoimmune antibodies or the streptococci themselves go through the blood-brain barrier does not need to be through special "molecular keys" as said in the article.
I wonder how much of this idea has been already investigated, but it may be that the concussion provided a breach in the form of a very small hemorragia in the brain.
This disease has a striking resemblance to the history of Lyme's disease transmitted by ticks. The symptoms last for years. The original bacteria is treated with antibiotics and cleared up. Ongoing treatment of antibiotics can help with the symptoms. Just as with Lyme's disease, the scientific community has been dismissive of patients suffering with long term affects.
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.
> 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"?
>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 dartboards in their office to decide on what to use.
Throwing in some antibiotics just on an off-chance seems like it would be a reasonable thing to try. Sure, there's a problem with antibiotic resistant bacteria, but this treatment doesn't have to be done immediately. If a patient has been prescribed various different meds for 6 months and none of them help, then why not try?
> 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.
>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.
Is the brain the only organ where everything is assumed to be idiopathic until proven otherwise?
Of course all organs sometimes just break by themselves, but for organs other than the brain, the immediate reaction seems to be to look for external causes. Is there perhaps a bias against that in psychiatry?
Looks like they lack a good clear diagnostic procedure for this (and most other autoimmune syndromes it seems), most likely because of the relation to the brain, can't just take biopsies... How would you even try to approach this?
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.
.. yes! This was the biggest empirical component, and ... what's going on? If it is Strep. shouldn't it be visible in a CSF (spine fluid) sample? PCR?
edit: https://www.pandasppn.org/flowchart seems pretty decent. the article paints an excessively mysterious picture, but this seems easy. also IVIG is relatively cheap and safe for kids and only one course is needed (and seems to work).
It is somehow of a side comment, but I always wondered why there is no CAM - Computer Assisted Medicine. The kind of program where you would input everything you checked (either physical exams, or quantitative information such as blood tests results, heart rate etc.)
In winter, a typical result from this program when someone comes with a sore throat, pain in the joints and headache is "flu" - at 98%.
But there is 1% left for parasitical infection of pythonus golangus, which can be extra tested by doing this and that.
And then the next 10 possible illnesses, extremely low probability.
What this could avoid is that an MD who is human and has zillions of patients with the same symptoms is helped to target something else either when there is something uncommon, or the typical treatment si not as effective as it would be.
I am a physicist by education, and IT by work. All what we do is more or less reproducible and it is extraordinarily uncommon that a bug is due to a cosmic particle hitting the CPU rather than a forgotten semicolon.
I believe however that biology is much more unpredictable, with a ton more parameters and an MD may have not heard about an illness (or have forgotten) so reminding them about the possibility could be enlightening (and direct the gut feeling they may have otherwise).
Medicine of today is still more art than science. Although we strive towards what you describe, there are enough poorly defined variables involved in diagnosis to make CAM pretty much useless. A major cause of that is the information requirement. People will describe and interpret findings differently, making reporting useless. Trying to directly measure things will stumble across very complex issues of calibration, etc.
Actually, all the current hype goes to AI/ML/automation, but the real priority would be to improve data collection. Unfortunately, it's less sexy and much harder. Old-school docs still have good times before them.
> A couple of days after returning to Marin, the family met with a chiropractor in San Francisco who specialized in the treatment of neurological disorders.
I must have a huge misunderstanding of what a Chiropractor is. I had always known them in the context of treating back pain and spinal issues, but more recently I’ve been hearing stories of chiropractors being seen for anything a “real doctor” won’t consider.
Chiropractors are a pseudoscience that managed to blur the line enough in legal and popular perception that the general public thinks they are doctors.
Imagine if a psychic was considered equivalent to a financial planner.
The fact that they might be right from time to time is inevitable, and is definitely somewhat of an indictment on the mainstream providers that they need to.
Because in the US, chiropractors have been elevated to near-MD-level and can even pursue MD residencies. Which has to be the greatest scandal in the history of medicine. And then americans come and tell you that their docs are the best on the planet... Go figure.
> 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?
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.
In that case it would be appreciated if the article said it like this:
>...just before the ski trip she had noticed that the skin around his anus looked a little red when he asked her to check it out because it was itchy.
Otherwise, it seems to imply that mum would see her healthy son's anus as a matter of course. Noticing the skin around his eyes is red? Expected! Noticing the skin around his nipples is red? Perfectly normal, I can imagine many situations where she could see them. Even noticing the skin in his crotch area is red? Maybe a bit odd, but perfectly believable if they're particularly liberal about nudity in the home... but the anus?‽
kid running around the house looking for a towel after showering? asking parents about a weird rash/redness in that area to check out? quickly changing in the family/living room before something?
But the description of rash around Anus was kind of odd, unless the child specifically asked their parents to look. Buttcheeks obscure that area so the other scenarios don’t make sense.
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 guard duties, hunting etc.
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 homosexual genes passed on as recessive. This is a valid hypothesis.
But the OTHER hypothesis that states, if homosexuality was genetic it would have been filtered out by natural selection and is therefore a disorder, is an equally valid hypothesis. There is nothing that makes this less valid then the conjecture you presented to me.
Both are logical possibilities, but there is little evidence supporting one over the other as in there is roughly equal amounts of evidence supporting and against both conclusions. So in a sense the two hypothesizes are in equal standing.
The other thing to consider is that the social group hypothesis is the non-obvious hypothesis. People initially think of natural selection on the individual scale. It takes more abstract thinking to place it on a tribal scale, an ecological scale, an anthropological/cultural scale, or as a local phenomenon of entropy in a physical system.
This is the key: To be impartial is to consider both hypothesis's and acknowledge the lack of evidence to place one over the other. However, what is it that makes you (and every other person replying to me) pick, out of two hypothesis's of equal standing, the non-obvious hypothesis while utterly and completely dismissing the obvious hypothesis?
Anyway, the answer is clear, there is strong cultural bias that pulls people in the direction of a reality where equality among people who have different sexual preferences is real. People will unconsciously spend extra effort searching for the hypothesis that best fits there cultural bias and even deny the obvious one.
Hence the reason why the harder non-obvious hypothesis is picked. It better fits.
Literally in the replies there's a dude that's calling me misinformed and there's another dude that's hard lining a No. I am telling you none of these people have definitive evidence for anything (because NONE exists). They are simply observing two logical conjectures and picking the one that best fits their own cultural narrative/bias and they are hard lining a conclusion as a definitive answer when in academia this topic is not conclusive AT ALL.
Tell me what conclusion can you derive off of that? That homosexuality is for sure non-genetic and therefore a recent disorder? No. You can't derive that, you can't derive anything off this study. The study is just saying that nothing was found, it doesn't mean nothing exists. That's the state of academia on this topic today. Nothing.
Until we find a causative origin of homosexuality current opinion of academia on the two hypothesis's right now is inconclusive. However, outside of academia the current opinion is definitive and we all know, given the replies to my post, what that conclusion is.
Another thing to consider is, why did you address my example instead of addressing my main point? Again the urge to align reality with cultural bias is far stronger then the discussion at hand. If the urge is strong with you (and the other people who replied, as practically everyone chose to address the example rather then the main point) then it is equally strong with doctors who put much faith in what they're taught by the medical establishment. This further illustrates my point; and the point is:
Cultural biases by society and the medical establishment rule practically everyone's behavior (including you and everyone who replied to me) to a huge extent. Think of this thread as a social experiment meant to illustrate this point. The example was just an example, but cultural biases are so damn strong that it pulled everyone out of the frame of talking about doctors into talking about the example.
"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.
>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.
Yes but that does not mean you discount the straightforward answers either. A more complicated and creative answer does not make it more right then the simple answer. That is one aspect of the bias a lot of people have for the topic.
I'm actually a researcher in academia in this area. I'm more well informed then medical professionals on this topic. I am sorry to say that you, like everyone else jumped to a conclusion here.
Why don't you look at my other reply, there's more nuance there, and it might break you out of your own bias.
You may be a researcher in the area but you are also a very pretentious one. This statement that docs consider their patients dimwits is wrong. It may be true for some docs. Just like it's true that some researchers have a very myopic view of their own field.
> This statement that docs consider their patients dimwits is wrong. It may be true for some docs
I disagree. I feel this is true for over 50% of docs in my anecdotal experience. Of course in surveys 0% of docs will admit to this so we can't really prove it either way.
>You may be a researcher in the area but you are also a very pretentious one.
Yeah I dropped that bomb because people were calling me ignorant. I usually don't rely on my credentials or authority but the amount of "violence" and blood in the replies made it seem like it was necessary for people to even consider my points.
>Just like it's true that some researchers have a very myopic view of their own field.
Why don't you read all my responses in this thread. You will find I am promoting open consideration of SEVERAL hypothesis including my opponents, Meanwhile other people are promoting complete dismissal of the hypothesis that I introduced.
I would say by definition my view point is less myopic.
I did read all of your answers. From them, I was at least able to understand that you've got a personal problem with docs. No shame in that, many people are the same. That must be part of a bias such as those that you talk about so often.
Now, you associated "I am a researcher in that field" with "docs think their patients are inferior beings". So, how about a reference supporting your statement? Or were those statements accidentally associated?
>I did read all of your answers. From them, I was at least able to understand that you've got a personal problem with docs. No shame in that, many people are the same. That must be part of a bias such as those that you talk about so often.
Could be true. I don't think it's personal though. I think doctors have a real problem. But then again that could be just my bias. Hard to determine it either way. You can't prove it's bias any more than I can prove it's not.
I will say my thoughts apply exclusively to US doctors as my experience has solely been with them. Additionally the exorbitant costs and comparative worse quality of care then their European counterparts could exacerbating my bias if bias is what's going on here.
>Now, you associated "I am a researcher in that field" with "docs think their patients are inferior beings". So, how about a reference supporting your statement? Or were those statements accidentally associated?
I didn't make this association at all. I stated I'm a researcher in the field to give more credibility to an example I made that was used to illustrate a point.
This association was accidentally invented by you.
I do think that subconsciously US docs think of their patients as less intelligent and they tend to dismiss the opinions of the patients and just solely rely on their training to arrive at a predetermined conclusion. This has nothing to do with my background at all.
Also can we get off of my background? My background should have nothing to do with what I'm talking about here.
> My background should have nothing to do with what I'm talking about here.
You say: "I am a researcher in the field, so I'm more informed than most..." and then your background has nothing to with what we're talking about? Yeah sure, whatever...
> The point is to see that there is certain logic behind my statement that is worth discussion
Not really, no, given that it's based on a premise ("traits that harm a specific individual's chances of reproduction can't be selected for by evolution") that's obviously false as soon as you take half a second to look at eusocial animals.
The point was to consider the validity of such a statement as something worth considering. What you say is technically true but you made it kind of pedantic here and steered away from the heart of my point.
Let me reform it to fit with your logic: "Homosexuality as a trait is not selected for by evolution for humans."
There this statement is not definitively false. There is a realistic possibility that it's true.
Also please see my other reply in this thread for a more nuanced take on my point, which has nothing to do homosexuality (that was just an example).
The context, though, is that the assertion you are saying is worth consideration (homosexuality cannot be selected for and is therefore a disorder) was the orthodox scientific position not too long ago, was then thoroughly debated, debunked, and only now is summarily rejected.
This does not reflect a bias, but instead reflects that there is very little value in revisiting an exhausted question without bringing more information to the table.
It's not rejected. Homosexuality is rejected as a medical "disorder" by the medical establishment. However that's entirely different from what the anthropological and biological community thinks about the origins of homosexuality. It may not be a "disorder" but no one is sure whether it's biologically "normal."
Right now the real conclusion is inconclusive as shown in the research study above. It is actually not an exhausted question to people in this area of research.
It is only exhaustive for people outside of academia trying to paint a picture of the biological world according to a social ideal rather then a scientific truth.
> It may not be a "disorder" but no one is sure whether it's biologically "normal."
This is not a legitimate question to be answered and therefore has no scientific or research merit, so stop dragging biologists into it. How do you define “normal”? Once you have picked a suitable definition, what do you intend do to with that information?
Your linked article asks the questions about the genetic origins of homosexuality, which has fuckall to do with your own invented concept of “normal” or “disorder”.
Your whole premise is bollocks. You’re convinced that you have some enlightened thought exercise here but you really need to get your head out of your own ass. We get what you’re trying to say - but it’s too stupid to argue against.
>This is not a legitimate question to be answered and therefore has no scientific or research merit, so stop dragging biologists into it.
Stop dragging biologists when a biologist was attached to the research study I sent you? Makes no sense.
>Your linked article asks the questions about the genetic origins of homosexuality, which has fuckall to do with your own invented concept of “normal” or “disorder”.
All conceptions of the terms "disorder" and "normal" are invented concepts and highly opinionated. Humanity at one point called Homosexuality a disease and at another time they called it normal. That is simply a choice of definition.
Regardless of the semantic pedantry you're trying to bring up here, you know what I fuckall mean by the terms. If homosexuality is proven to have no genetic basis and is only a recent phenomenon, then it is not biologically normal. Simple.
>Your whole premise is bollocks. You’re convinced that you have some enlightened thought exercise here but you really need to get your head out of your own ass. We get what you’re trying to say - but it’s too stupid to argue against.
You know it's actually not MY premise. It's well established that this is inconclusive in academia.
Why the hell do you think the genetic origins of homosexuality was researched at all if it was definitively considered to be normal and genetic? The problem is INCONCLUSIVE hence the research study.
You need to realize you are not arguing with me. You are arguing with established opinions in academia.
The fact that you're a doctor makes me question the scientific neutrality of doctors in the field. Are all of them as biased and emotional as you?
uh, homosexual behavior is found in a wide variety of animal species. if it were a "disorder," it would have already been selected against. your analysis is just overly simplistic - there are a lot of traits that confer advantage to a group while reducing reproduction by an individual.
Sure, that's a valid point. But another valid point is the causative agent for homosexuality in humans is the same causative agent for homosexuality in animals and this would invalidate your point if it were true.
Anecdotally, and this is sort of a alternative guess. Within a population of equal size, much more humans will be homosexual than animals. I mean gay people are really abundant but I can't say the same for gay lions in Africa.
> 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.
Personal attacks and name-calling will get you banned on HN, regardless of how wrong someone else is or you feel they are. If you'd please read the rules and stick to them from now on, we'd appreciate it.
I also see this thinking erroneously applied to other psychiatric disorders like depression. Antidepressants seem to help some people, and not help some other people. Averaged over the entire population, they appear to have a mild positive effect. But there could easily be multiple causes of depressive symptoms, based on genetics, diet, behavior, drug use, and past trauma. Why do we take it as a given that antidepressants should help all of these sub-populations equally?
To take it to an extreme, there are many causes of blindness. Giving vitamin A to someone who lost his eyes in a car crash will clearly not help, even though vitamin A can "cure" blindness in some people. If we ran a double blind trial of vitamin A as a cure for blindness, it would almost certainly fail at the population level because blindness caused by vitamin A deficiency is a very small sub-population of all blind people.