For me, the repetition is a feature, not a bug. It's similar to Buddhist meditation practices, which also involve a lot of repetition. It really helps my brain to fully absorb the message and walk away feeling more calm and in control. But as with any philosophical text, your mileage may vary.
I applaud these researchers, but I have to admit this quote made my blood boil:
>> "I can only do this because I'm a cancer researcher and clinician and so inherently understand the risks," he said.
As a cancer survivor, and someone who lost a loved one to glioblastoma, I despise this mindset. The idea that us "common folk" aren't intelligent or educated enough to make the decision to join risky trials is maddening.
I fully understand and support this mindset when it's regarding minor diseases. But if someone has 6-9 months to live, and zero chance of survival, I think they have every right to choose to be used as guinea pigs.
I know my relative would have LEAPED at this sort of opportunity. She was given 6-10 months, and was dead by 4.
At the time, there was an on-going trial she was rejected for, because she had a minor preexisting condition, and thus is it was "too risky." I remember her saying that she would rather die in 2 weeks and help push science forward, then helplessly linger for a couple more months.
I am hopeful that the rapid development of the COVID vaccine may have flipped a switch in biotech, and may lead to more risky and experimental trials for truly deadly diseases, such as glioblastoma.
If not, I will continue to look to China for hopeful developments. They seem to have more relaxed barriers for trials, and I firmly believe this is one of the reasons their biotech industry is exploding at such a rapid pace.
People with what I have—recurrent/metastatic squamous cell carcinomas—are in effect already dead. We should be able to try novel drugs faster, and, if they don't work or have serious side effects, fine, the end result is the same. If they do work, they may prolong everyone else's lives.
Have you tried obtaining the drugs by other means?
My mom is taking an experimental drug, not FDA approved, which my dad obtained from India after much research and after consulting with her doctor.
Tests have shown she’s a part of percentage of the population that doesn’t metabolize tamoxifen well, so the drug is useless to her. Instead she’s taking endoxifen, which is the main active metabolite of tamoxifen. It’s currently in clinical trials.
I’m sorry for what you’re going through. I think there really should be a separate FDA category for people with a few years left to live. Still not available to the general public but something a physician should be able to recommend to terminal cases.
Have you tried directly calling or visiting the trial location and try to get in touch with the person administering these to see if you can get in that way. Alternatively if you’re rich you can commission a lab in India to make these for you. They have a lot of experience making the covid mRNA drugs so should be able to pivot relatively easily if you’re paying enough. Bharat labs made the Covax vaccine so maybe start there but I’m sure a bit of googling should bring up more labs.
You have nothing to lose man. If you’re too sick to call around I hope there is someone in your life who can. Go down swinging, contact an Indian/Chinese lab today.
Same elitist attitude I saw on a recent NYT piece about paid full-body MRIs. "People might find stuff that isn't cancerous and freak out".
OK well, it might also find early stage cancers that show no symptoms until past the point of no return!
MRIs have no side effects aside from the high cost. Even their high cost is reasonably affordable if only done every 5-10 years.
As long as doctors & patients make rational follow up decisions with the results, it's a net benefit to be able to get these scans every few years to catch early, slow moving, hard to detect cancers.
There are a wide range of cancers there really are no routine screenings for.
Yes we screen for what.. breast, colon, prostate, skin.. But what of liver, kidney, thyroid, pancreas, and various others?
We had a close friend discover they had stage 2 cancer found during a CT scan after a routine medical procedure went awry. They were told that had the slip-up not occurred, they would have probably lived another 5-10 years, and not fallen ill with any symptoms until stage 4.
I don't understand the mindset that we should just pretend the tools aren't available to detect things earlier.
It's more complicated than that. Misdiagnosis comes with a high cost. What we emphatically do not have is a way to reliably confirm or stage without additional risky interventions, and that's before we even start discussing the mental health implications of misdiagnosis. So as a doctor, it's not about withholding information for the benefit of the patient, it's being aware that for many cancers, in aggregate, they may very well end up doing more harm than good if they screen for it.
I don't understand this logic at all. How can more information be bad? If you see a mass that looks very likely to not be cancer, for which the cost of further investigation is higher than the likely benefit, then the rational patient will agree not to investigate further. I don't see how more information can be bad unless you assume that the patient is an idiot or irrational.
Exactly. You could even have the option of contributing your MRI scans to academic research so that future identification of cancer improves, and set up a happy feedback loop.
The scary truth is modern western medicine is primarily optimized to extract revenue while reducing spending and improving patient outcomes is merely a side effect of that process. Even in places such as the UK NHS it's all about not finding out things we don't want to know so we don't have to spend money dealing with it.
This is why I look forward to when we can replace doctors (not nurses) with AI.
> The scary truth is modern western medicine is primarily optimized to extract revenue
MRI scans are a fantastic source of revenue, as are treatments for things that don't actually need to get treated. Reducing those things are actually doing the opposite of the motivation you're claiming.
Those raise revenue. Actual spending involves effort which cannot be easily industrialized, and is only done to maintain the prestige of the industry.
This is why getting tested for something which results in endless prescriptions is done enthusiastically while a test for something which might find something which requires them doing actual work provokes the sort of self serving concerns expressed elsewhere.
> This is why getting tested for something which results in endless prescriptions is done enthusiastically while a test for something which might find something which requires them doing actual work provokes the sort of self serving concerns expressed elsewhere.
You'll have to be more specific because right now this is just handwaving. What kind of "actual work" are you referring to?
It's generally actual medical researchers, who will neither get revenue or have to do actual work, who are objecting to excessive testing without patient outcome benefits.
> You'll have to be more specific because right now this is just handwaving. What kind of "actual work" are you referring to?
Anything that isn't completely reduced to an industrial process. i.e. we want to have a simple no-effort repeatable billable outcome for this or we won't do it and will claim doing so is counter productive or dangerous.
> It's generally actual medical researchers, who will neither get revenue or have to do actual work, who are objecting to excessive testing without patient outcome benefits.
And they're doing the establishment's dirty work by doing so.
To provide a concrete example, I'm in Canada, and my other half had to pay for private MRI and ultrasound scans to identify a lump that she was laughed out of the room by three successive doctors for claiming she had. The MRI got her finally referred to a surgeon that announced he'd never seen anything like it, removes it, end of story.
That's far from an isolated case. I know people in the UK that literally died from these antics.
At one point I was invited to the opening of some medical simulation centre, and the speeches were enlightening. Two things stay with me: tests in India demonstrated that qualified doctors were no better than unqualified doctors except when the qualified doctors were told some of the patients were faking as part of an experiment and they are being observed, but mainly "I read a study that showed ~5-10% of people in US hospital are there because of a medical mistake from a previous visit, so I laughed and commissioned an equivalent study to show how much better we are in Canada, except for us it was >15%". The person telling that story was rightly disgusted. Those are not numbers for a profession that respects patients in the slightest.
You will forgive people with actual experience on the receiving end of this nonsense for thinking that maybe it's not actually setup to provide the assistance it claims to provide, and is primarily for the aggrandizement of those engaged in the rituals.
Yes.
This to me is the same line of thinking as "in a meta study, wearing a helmet makes bikers more reckless and prone to injury so it's actually safer to be helmetless".
No, actually it's safest to wear a helmet AND not become reckless.
So similar approach here - its safer to get the imaging AND remain rational in evaluating results & next steps.
Because further investigation is dangerous. So you see a mass which has an a posteriori probability of being cancer of 1%, but the investigation causes serious complications in 2% of cases, then the decision to investigate is not clear cut. The additional information has not only not helped but has led to additional stress.
Not all further investigation needs to be surgical.
A mass that is found can be observed in decreasingly frequent ultrasounds or some other imaging and surgically investigated/removed only if found to be growing or passed a concerning size threshold.
A doctor jumping straight to invasive procedures seems to be a mix of poor risk management and rarity of this type of medical imaging.
My doctor for example, pointed out that actually in some East Asian countries, there are routine annual imaging tests done that pick up some of the types of cancer we do no screening for.
To me the reason we don't in US is simply how medical care is paid for - employer provided insurance, and some actuarial calculation that on the insured pool they'd spend more money on imaging than they'd save on high cost stage 4 cancer care. Personally I'm happy to advocate more for myself, even if it costs money.
Both human nature and the legal system can be very hostile to "we didn't investigate anomaly A, B, C, D, E, ... in the patient's scans and test results, because none of them seemed likely to be worth the costs of doing so".
Full body scans have quite some history. If they were effective at routine preventive detection, the NHS would deploy them in a flash, because its cheaper right?
The problem is the false positive rate is >> catching unknown bad things.
its the same with breast cancer in the UK there is a 3.1% false positive rate. https://digital.nhs.uk/data-and-information/publications/sta... which requies follow ups. Now as breast surgery is reasonably uncomplicated (source: wife did breast surgery in training) its not _much_ of a risk and is worth it.
However, if its something in the liver, brain or spinal column, the risk its pretty high. This leads to a higher chance of injury from surgery vs stopping something unknown.
This is why something that actually identifies cancer cells is much better than looking for smears on an image. Unless you have monthly MRI scans, from birth, you are going to get nasty side effects from invasive investigations.
EDIT: also most people don't really understand the difference between CAT and MRI scans. CAT scans are much cheaper, faster, and better at finding cancer (you can use dies and junk). given the difference in cost, time and comfort, a lot of people will choose a CAT scan instead. However regular CAT scans will give you a much higher risk of cancer. Something the kardashians pushing whole body scans will neglect to tell you.
Thanks for the edit and even the NYT article obscures this.
My point on MRI is that they do not themselves have side effects.
If you have a doctor that immediately sends you for a bunch of CAT scans and/or cuts you open, then obviously there are side effects.
And why would you immediately jump to either? If it's the first ever scan, and you see something unusual it could be monitored by a 6month/1year ultrasound and/or MRI followup.
Unfortunately it doesn't seem like any of the direct cancer detection solutions are there yet either. There's a recent startup that claims something like 5% detection of stage 1 / 10% detection stage 2 / 25% detection stage 3 / etc on a set of cancers, but they also just accidentally mass-mailed a bunch of negative patients that they have cancer.
You also express a false dichotomy - single MRI bad, but monthly MRIs for life good?
A sober reading of annual MRI/Ultrasound type tests without knee-jerk invasive followups when you are 30+ seem like a reasonable risk weighted solution in contrast, doesn't it?
> You also express a false dichotomy - single MRI bad, but monthly MRIs for life good?
yeah, this is badly expressed on my part. I was trying to get across that a single whole body scan without context (ie it hurts here, or it bleeds there or we suspect x) is difficult to interpret. think of it as a day's unstructured logs. Regular scans allows you to build up a picture of whats changing, and whats normal for you.
> A sober reading of annual MRI/Ultrasound type tests without knee-jerk invasive followups when you are 30+ seem like a reasonable risk weighted solution in contrast, doesn't it?
I think routine targeted scanning is something that is worthwhile. The UK does a number of them, and they were normally based on evidence of outcome. Prostate/breast/cervical etc etc. I personally think the future of public health is something akin to getting each personal a vitals dashboard.
But, I'm not sure regular MRIs will give us that. if the evidence changes though, then it should be reassessed.
that have a reason, as it's been demostrated by a lot of metastudies you can find on cochrane that there is usually much more worst outcomes and long term effects on the broad of the population when misdiagnosed by overdiagnosing than just simply saving an extra 0.01% (not real number)
the same reason of why for example now there is an advocacy to end yearly mammograms on older woman, because the number of them saved by that practice is inferior to the ones that are misdiagnosed and then put under other unnecesary medical practices that end up hurting more by unnecesary practices on a lot of them that would have never developed a cancer or under pressure to the ones that no one will be able to save no matter how sooner they got the diagnostic.
infinite constant and unnecesary medical tests is not the way for now, maybe in the future, but not now.
"I remember her saying that she would rather die in 2 weeks and help push science forward, then helplessly linger for a couple more months."
But then the numbers won't look as good for the drug company.
But yeah, I agree. I wouldn't be surprised if some people with backgrounds in chemistry and stuff start helping others synthesize some of the drugs by sharing knowledge in the future, renting out equipment, etc. Dallas Buyers Club meets Breaking Bad would be interesting.
I’m with you. I understand the ethical dilemmas of giving pharma unfettered access to sick people. Still, sick doesn’t automatically mean dumb. My wife reads medical journals and knows how to interpret them. I have much less (yet still more than most) medical experience than her, and I do risk analysis for a living. I think either of us are qualified to look at the statistics and make a rational decision about our own healthcare.
It’s not his being a cancer researcher allowing full understanding of the risks and possible benefits that is important. It’s more that being a well-known and well-connected cancer researcher enables him to quickly access the contacts and have the discussions necessary to access unusual treatments.
The shame is that doctors (and hospitals, and nurses…) and the care they offer are like everything in life: on a spectrum of quality. Most people diagnosed with a serious disease (such as cancer) simply don’t have the knowledge, skills, time, and resources necessary to drive themselves further along this spectrum from the median towards excellence.
The system is such that to achieve optimal medical outcomes for oneself requires an understanding of the medical system, and an ability to work effectively within (or manipulate) it, to your own benefit. And it’s easy to understand that a well-connected doctor would be able to do that better than most.
- I jumped some walls that others won't be able because I knew the right people as we work together and they dedicated some of their personal time and public funds to help me, but they won't do it for you
but without sounding like he used the privileges he really had
Someone who died of an unrelated condition during the trial doesn’t push the science forward, though. They’re not worried about the risk to the patient when they deny entry to an existing trial: they’re worried about the risk to the data.
Absolutely tragic. My thoughts go out to his family and friends. I cannot begin to imagine the pain of losing someone to such a needless cruelty.
I live in SF, and the violent crime situation has definitely been getting worse. Unfortunately, it's far more nuanced and difficult to solve than the media will lead you to believe.
SF has one of the lowest violent crime rates of any major city, but the violent crime we do have seems to be far more erratic and less organized than in other cities. So we don't have easy "targets" for law enforcement to crack down on, like serious gang and cartel activity. Instead, we have a hodge-podge of issues--mentally unstable homeless, fentanyl and carfentenil, sex trafficking, and some smaller gangs.
There's the added issue that calling the police is largely useless. Just a couple weeks ago, I had a group of men harassing me on public transit, and threatening to rape me when I ignored their advances. While this was occurring, one of them was rolling a joint (and spilling pot onto the floor), while another one was repeatedly spitting onto the floor.
So you have a group of men threatening a woman, doing drugs, and spitting on public transit. And everyone around me basically just ignores the situation. Because we all know the police won't do anything if they're called, because their hands are tied until a serious crime is actually committed.
I was left to scramble off at the nearest stop and run into the nearest occupied building, praying they didn't follow me. It was such a frustrating, helpless feeling.
Reading about victims like Bob Lee makes me realize how incredibly lucky I was that I wasn't followed. Law enforcement in this city is there to clean up messes, not to prevent crime, and all the criminals know it.
As someone who lives in the neighborhood the man in this article has been prowling, this quote absolutely hits home: "So far, the city’s criminal justice system seems to be sending Ann and the other women a clear message: You’re on your own. Buy pepper spray, hustle along and hope for the best."
The social contract in this city has been shattered. I can only hope people are willing to take steps to mend it.
I'm not convinced these things are mutually exclusive. When you break down the statistics, 61 kids between the ages of 0-11 were killed so far in 2023 by gun violence (just typing that makes my stomach hurt...). In comparison, 355 teenagers (ages 12-17) were killed. (1) That's 6x the amount of death in an age bracket half the size.
The huge spike in death rate is largely linked to gang violence. Gangs often start recruiting around the age kids hit puberty. Take a look at the Gun Violence Archive's incident reports on mass shootings, and you find a huge percentage are tagged as "gang violence" and resulted in dead or injured teenagers. (2)
When you hear about "school shootings" happening in America, very few are Columbine style events. Most are gang related, and impact the most vulnerable and poverty-stricken student populations who have the least resources to deal with the resulting trauma. There is a reason poor, inner-city schools are usually the ones with metal detectors at their doors.
Gangs are still fueled by drug sales. Drugs and gun violence go hand in hand. I don't think we can solve one without solving the other.
We desperately need resources and reforms poured into both issues. But I think if we treat them as unrelated problems, we're doomed to fail.
One of the most horrifying social media pages I've seen was an influencer who billed herself as a "trans activist" and documented every moment of her trans daughter's life.
This poor kid was 8-years-old and attempted suicide on a regular basis. Every time she tried to kill herself, the mom would document the gritty details, post pictures and details about it online (and of course get massive likes/shares by well-intentioned folks wanting to "raise awareness"), and request donations for her "activism."
That girl will never be able to "pass" as female due to her face/identity being plastered on social media as a trans kid. She also will have to live with the horror of millions of strangers knowing the gory details of her trying to shove a knife into her wrist, chugging Tylenol, and having complete mental breakdowns at school that required emergency medical intervention.
My gut instinct also suspects the girl's poor mental health has a strong element of Munchausen by Proxy. It is bizarre for an 8-year-old to know that Tylenol and wrist-slitting are both preferred methods for suicide, and to act on this knowledge.
Despite all this, the mom was clearly raking in donations, and collecting thousands of comments about what a "hero" she was for "bringing light" to trans issues. The horrified comments by trans individuals were always buried at the bottom of posts.
The entire page felt like thinly-veiled child abuse, but there isn't anything in Facebook's code of conduct that could be used to stop it. And Facebook of course had no incentive to address the content--the page had millions of likes and was surely a great source of traffic/profit.
I would love to see policies in place to restrict this sort of child exploitation. I am all for freedom of speech on social medical platforms, but blatant exploitation of children in exchange for money is a special sort of cruelty that should be reined in.
> It is bizarre for an 8-year-old to know that Tylenol and wrist-slitting are both preferred methods for suicide, and to act on this knowledge
As a parent this really stands out. I have a kid around that age and almost his entire "serious" knowledge comes from home. He does pick a lot from other kids at school but in a very abstract way.
When I think about what is on his mind compared to what you painted there, the difference is mind-blowing. A good illustration of the dangers of social media for people —of all age— who lack guidance and perspective.
> This poor kid was 8-years-old and attempted suicide on a regular basis. Every time she tried to kill herself, the mom would document the gritty details, post pictures and details about it online
Munchausen's by proxy is real, and the consequences of it are at least as damaging as denying children access to medical transition services.
I believe that you have taken the position that this child is really experiencing gender dysphoria, but it's at least an equally plausible scenario that the parents are responsible for that too.
This is a serious hole in the argument for providing gender affirming care to children in an attempt to reduce harm. The trans-activist community is becoming complicit in child abuse when it denies the existence of this problem.
Ignoring the fact that 8-year-olds do not receive medical treatment for gender dysphoria, is the existence of Munchausen's by proxy also "a serious hole in the argument" for providing children with medical care in general?
Not providing a 10 year old with puberty blockers when you suspect that it is because the child has been manipulated into believing that they have gender dysphoria is practicing medicine. So I am not proposing that we deny anyone access to medicine.
Parents with Munchausen's manipulating their prepubescent children into socially transitioning is a good explanation for the rise in prepubscent children socially transitioning. If we allow ourselves to believe that this scenario exists, then we must allow ourselves to consider the possibility that it happens a lot, since Munchausen's is at least as common as gender dysphoria.
> Not providing a 10 year old with puberty blockers when you suspect that it is because the child has been manipulated into believing that they have gender dysphoria is practicing medicine.
Not if there is no reasonable basis for that suspicion; in that case, it is just practicing bigotry.
> Parents with Munchausen’s manipulating their prepubescent children into socially transitioning is a good explanation for the rise in prepubscent children socially transitioning.
Without a causal mechanism to explain the increase in both the incidence of the disorder and that particular manifestation, its a pretty crappy explanation, when “people become more likely to report symptoms that they actually have when the social stigma of reporting those symptoms is reduced and awareness exists of treatments that mitigate the symptoms” is a much better explanation with a clear causal mechanism for the upswing in reports of gender dysphoria.
There is absolutely a reasonable basis for that suspicion. There are simply many times more prepubescent children with claims of gender dysphoria than at any other point.
How effective a test is for diagnosis depends heavily on what my priors are about the population it is applied to. If I were to administer an HIV test to every American adult, and then started everyone who got a positive result back with antiretrovirals, I would almost mostly be giving that treatment to people without HIV. This is true even though the test is very accurate. If the number of people walking into gender clinics goes up by a factor of 5, I cannot, a priori, expect that my test has the same predictive power that it used to.
> is a much better explanation with a clear causal mechanism
A priori, they are both good explanations. An explanation is good if it's simple, predictive, and you do not have the data to disprove it. The way we distinguish between competing good explanations is through testing. So far no one has proposed a test to tell the two hypotheses apart, except perhaps to look at the rate of detransitioning among the cohort of recent transitioners. This data has yet to become available, as it requires longitudinal study, but the leading signs are not necessarily in favor of your hypothesis. https://academic.oup.com/jcem/article/107/10/e4261/6604653
> > Parents with Munchausen’s manipulating their prepubescent children into socially transitioning is a good explanation for the rise in prepubscent children socially transitioning.
> Without a causal mechanism to explain the increase in both the incidence of the disorder and that particular manifestation, its a pretty crappy explanation
Eh, what? It's right there in what you replied to:
The manipulation is the causal mechanism.
> Parents with Munchausen's manipulating their prepubescent children into socially transitioning is a good explanation for the rise in prepubscent children socially transitioning. If we allow ourselves to believe that this scenario exists, then we must allow ourselves to consider the possibility that it happens a lot, since Munchausen's is at least as common as gender dysphoria.
You seem to have confused what used to be called Munchausen's syndrome and Munchausen's syndrome by proxy. Or where you got your information did. Now they are called factitious disorder imposed on self and factitious disorder imposed on another. Factitious disorder imposed on self is estimated about as common as gender dysphoria. The ranges overlap. Estimates for factitious disorder imposed on another are much lower.[1] And most cases involve infants or very young children. Probably because older children can speak for themselves and are less pliable.
I do not have them confused, I just didn't want to say munchausen's by proxy 30 times when it is clear from context. Munchausens by proxy is less rare than Munchausen's. The 1% figure is more or less accurate.
> Not providing a 10 year old with puberty blockers when you suspect that it is because the child has been manipulated into believing that they have gender dysphoria is practicing medicine. So I am not proposing that we deny anyone access to medicine.
Of course if there were some specific reason to believe that the child was being manipulated, then it would be medically appropriate not to treat them with puberty blockers. But you said "this is a serious hole in the argument for providing gender affirming care to children" as if you think this should be the overriding concern even when there's no specific evidence that the child is being manipulated. That is what I take issue with.
Suppose that we were discussing an influencer parent who was exploiting their child's blindness for social media views. Would you be telling people that it's just as likely as not that the child is just pretending to be blind to satisfy the parent with Munchhausen's? If not, you're special pleading: https://en.wikipedia.org/wiki/Special_pleading.
> Parents with Munchausen's manipulating their prepubescent children into socially transitioning is a good explanation for the rise in prepubscent children socially transitioning
It's a very poor explanation, because more people of all ages are transitioning more than in the past, not just prepubescent children. It also stands against an obvious and much simpler explanation, which is that children today are more likely to encounter the idea that someone can be trans and much less likely to be told to suppress non-normative gendered behavior.
> we must allow ourselves to consider the possibility that it happens a lot, since Munchausen's is at least as common as gender dysphoria.
You say that as if it means that a given child presenting with gender dysphoria is just as likely to have Munchausen's by proxy as actual gender dysphoria. But there are tens of thousands of possible conditions someone with Munchausen's might imitate instead. We should expect that the fraction of them that imitate gender dysphoria is dwarfed by the number of people who actually have gender dysphoria.
It's telling that your argument is entirely theoretical. If there were a significant number of children manipulated into socially transitioning because of Munchausen's by proxy, there would be actual confirmed examples to refer to. If it were a large-scale social problem, there would be data on its prevalence. But there isn't, because this is a scenario fabricated to apply unjustified scrutiny to children with gender dysphoria.
> when there's no specific evidence that the child is being manipulated.
I disagree with your apparent assumption that "manipulation" by a parent must not only be a negative thing, but that it must also be a conscious effort made by the parent to affect their child's behavior one way or the other. I put the word "manipulation" in quotes because I believe that for many people the word carries a negative connotation, and I'm attempting to point out that in the context of parenting it absolutely does not have to be negative.
I think it's important to note that when children do things that upset a parent, the parent will naturally react in a way that potentially "manipulates" the child into not acting that way anymore.
For instance, if a child acts out at school and gets suspended for a few days, some parents might frown but then say, "That's okay. We know that this incident doesn't reflect who you are." But then let's imagine that the parent is more distant than usual that night, and doesn't interact with their child as much as they normally do (for instance, they might not ask about the child's day during dinner). Even though the parent may not be intentionally doing this (maybe they're just caught up thinking about their child, and what they can do to help), they are in fact sending signals to their child displaying their displeasure.
Similarly, when a child does something that pleases a parent, the child might discover that the parent is more talkative than usual at the dinner table that night, and more interested in what's going on in the child's life. This rewarding behavior could be explained by a parent simply being excited about their offspring succeeding.
In this way you can see that it doesn't take much to "manipulate" a child's behavior. Some people might refer to "attempting to manipulate the behavior of their children to produce a desired outcome" as "parenting". If a child throws a rock and breaks a neighbors window then a parent might scold the child, and this absolutely counts as "manipulating" the child's behavior.
Getting back to the discussion at hand, when a parent rewards their child for a specific behavior in a manner that suggests that the child is courageous and unique, the child might feel pressured to continue engaging in that behavior. If a child is considered by their parent to be courageous and unique when they engage in a specific type of behavior, what might the parent think if the child suddenly stops this behavior (from the child's perspective)? Instead of courageous and unique, will the child now suspect that their parent views them as a cowardly sheep, or a quitter? Is it so far fetched to imagine a scenario in which a child takes a certain stance as a rebellious gesture, but then finds that it backfires when their parents are thrilled about it and shares it with the world? Can you imagine the potential embarrassment of the child? Adults aren't the only humans who can get embarrassed, afterall.
In summary, even such small things as a frown or a smile (or even talking a little less or more than usual) can serve to manipulate a child's behavior, let alone ecstatically sharing every detail of a kid's behavior to the online world. Creating the equivalent of a reality TV show of a child's life will absolutely impose the unspoken expectations and unconscious biases of the parent, and will in effect manipulate the child's behavior and course of action.
Edit explanation: Clarified a point earlier in my response, and fixed/embellished a few sentences.
There's no denial of the problem, only of the attempt to elevate it into something more common than it is in an obvious ploy to make gender affirming care harder to access with a time-honored "won't someone think of the children!" moral panic that's already having negative effects on adult trans people's access to care.
There is extremely active denial of the problem. The parent comment didn't even consider this as a possibility.
Moreover, your comment is also an example. You can't simultaneously describe yourself as not denying the problem while completely dismissing that problem as "moral panic designed to deprive adults of access to care".
I am completely on board with giving adults access to care. I am significantly more hesitant to give parents access to medical interventions for their children. Please do not warp my words.
PS: You might describe Munchausen's by proxy as a rare condition, but its prevalence is on the order of 1% of the population, which happens to be at parity with the rate of gender dysphoria in the population. It is not a rounding error.
Munchausen's syndrome by proxy is called factitious disorder imposed on another now. The highest estimate I found from a reputable source was 0.04%.[1] Claims on the order of 1% turned out misreported estimates for factitious disorder imposed on self. And most cases of factitious disorder imposed on another involve infants or younger children.
The 1st comment stayed close to the article subject. It presented reason for concern even without speculating about the child's gender dysphoria. Adding that speculation predictably moved the discussion far from the original subject. Not bringing up something at every chance is not denial. Never mind extremely active denial.
> Munchausen's syndrome by proxy is called factitious disorder imposed on another now.
Honestly, who gives a fuck?
Yeah sorry, that may sound a bit harsh... But really, what's this constant renaming of things supposed to be actually good for? The main effects seem to be:
1) Some people get to feel all good and righteous and “with it”, because they know the PC terminology; and
2) The rest of us are A) either annoyed at i) having to learn new shit again, ii) not getting to be in that hip and in crowd, or above all, iii) how smug and pompous those masters of the PC vocabulary come off, intentionally or unintentionally giving the impression that they look down on us peasants...
Or B) Just confused as to what the fuck they're talking about.
So thank you, I guess, for having taught us – me – this, so I won't look like an ignorant bumpkin next time someone says it... But I would very much have preferred not having to.
I've been down this road. I'm not going to say anything that can convince you.
edit: You might want to consider not using the same rhetoric as folks who call people groomers for not wanting kids to kill themselves because they can't get treatment for their dysphoria. Reconsider your sources of information if you sincerely feel hurt by being seen in the same light. You are parroting propaganda.
In response to your edit, which I believe deserves its own response:
I'm basically going to ignore the part where you accuse me of using the "same rhetoric as X". I don't know what that means, or how it's relevant to what we're talking about. I'm certainly not hurt by it, as it doesn't mean anything.
If Adolf Hitler himself arose from the grave to agree with me, and that caused me to change my mind, then I would consider that evidence that I didn't have a good reason to believe it in the first place. This is not the case here.
I am actually pretty skeptical of the claim that the "people calling trans-activists groomers" are making this point. That just sounds like a name that you've given to the entire set of people who disagree with you, regardless of their reason.
Concretely, it seems that we are both of the opinion, based on the content of this comment chain, that it is important for the system to protect children. Either from killing themselves as a result of not being able to receive gender affirming care, or from their parents, who use them as a means of acquiring attention.
My claim is that it is well established that the latter problem exists, and that it exists commonly enough that it is not clear that, even under the most generous assumptions of the causal link between gender affirming care and suicide attempt reduction, that this offsets the damage that is caused by giving Abusive parents this tool.
Moreover, this is clearly not black and white. This is a matter of policy. I am not claiming that it is impossible to protect children from both threats. I am merely claiming that gender affirming care doesn't.
You might want to consider that having trouble convincing other people is explained at least as well by having a bad argument as the other people being bigots.
Yeah this is one of those stories that if you really feel like it's worth telling so that people can understand the experience of trans kids and what it's like as a parent you need to contact a journalist who knows how to do this right so they can tell the story in a way that can't be traced back to you or your child. The very last thing someone who's trans needs is to have a spotlight shoved in their face involuntarily.
I actually do work in the space of telling the stories of trans folks (although not involving kids because obviously) and even with adults we still take crazy precautions. I push hard even when we get someone who doesn't want to be anonymous because you can't put that cat back in the bag and being a google search from being outed will haunt you if you ever want to "go stealth."
> The very last thing someone who's trans needs is to have a spotlight shoved in their face involuntarily.
Exactly! This seems so incredibly obvious, and I was stunned by the thousands of followers on the page who seemed to nonchalantly view this kid's privacy and wellbeing as a worthy sacrifice for supposed "trans activism." Especially since there were quite a few negative comments from trans individuals pointing out why this was wrong and a major violation of the girl's rights.
Stories about trans kids are very important to tell, and they can be wonderful tools to encourage empathy and understanding. But they deserve the utmost caution and respect when handling them, especially when there is the complication of people being able to profit off the children.
The other startling thing about the page was the mom's complete lack of interest in shielding details such as what school or hospital the girl went to. It seemed wildly dangerous to publicly proclaim your child to be a member of an endangered minority who often faces hate crimes, and then tell the world exactly which elementary school they attend. Talk about a great way to bait nut-jobs.
I realize I sound very twisted talking about those sorts of possibilities, but as someone who works in cybersecurity, I have just seen too many creeps commit too many crimes.
I would absolutely love to see a policy that forbids the sharing of photos of children, and any identifying details of children, to a public audience. If people want to share those things with their direct network, then sure. But it seems a wild violation of personal rights to be able to share those personal details about another human being to the entire internet, when the child is far too young to consent.
> I would absolutely love to see a policy that forbids the sharing of photos of children, and any identifying details of children, to a public audience. If people want to share those things with their direct network, then sure.
And even that is difficult. I mean, let's say Facebook could be required to forbid people from sharing intimate stuff about children with the world at large, but only let them be visible to family and friends. “Wow, easy, problem solved!”, right? But then there are lots of people who have many hundreds, even thousands, of “friends”. How “direct” a network is that?!? So no, not easy at all.
Absolutely gut wrenching. This is child abuse plain and simple. These people are confusing their children and raking in the $$$ and making themselves feel good for virtue signalling. What's society heading for? Wake up.
I’m not sure social media deserves all the blame here. This kind of exploitation has its roots in reality shows like Here Comes Honey Boo Boo and I Am Jazz - there’s no bright line between those shows and what you describe.
Jazz in particular has been treated terribly. He's been physically and mentally destroyed by his family and his clinicians, brainwashed from age 2 or 3 into believing he was supposed to be a girl. This nightmare is all he's ever known. There will be no happy ending either, just misery and the shock of realizing his life is a travesty.
His show should be watched as a dire warning against the medical abuse of children.
I saw a post from the mom mentioning CPS had been called on her, which was the only reason I didn't call myself. I am skeptical of CPS in general, but an 8-year-old with multiple, sophisticated suicide attempts, and a mother making money off these attempts, just seemed way too sketchy to ignore.
Unfortunately, it seemed CPS had cleared her. At the time (this was back in ~2017), I shared the page with a friend who works alongside CPS, and she grudgingly agreed there wasn't really anything CPS could do. The kid seemed to have legitimate medical diagnoses, and the mom could easily argue in court that she was just "documenting her daughter's medical journey."
I can't seem to find the page now, which I'm hoping means it got shut down. Fingers crossed that little girl has found health, happiness, and the privacy she deserves.
In the 80s and 90s, right-wing Christian activists demanded the censorship of tons of "inappropriate" material from mainstream books. A good amount of censorship occurred at the height of the Satanic Panic, but ultimately the publishing industry grew tired of it and balked. The result was an explosion of the "Christian fiction" genre--it's a genre of books that is completely sanitized of things like premarital sex, illegal drugs, homosexual relationships, alcohol abuse, violent assault, rape, crime, cursing, spousal abuse, etc, thus leaving it "clean" and appropriate for Christian consumption.
The result was less pressure on the publishing industry to censor books. When Christian activists came knocking, the publishing industry could say, "Look, you guys have an entire section of the bookstore filled with books that cater to your morals. So leave Twilight alone."
I think it's probably time to create a similar genre for leftist activists. A "safe fiction" genre would allow for books that have been stripped of all things leftist activists find offensive. No body shaming, homophobia, mental health related slurs, etc. Having designated "safe fiction" books might have a similar effect of relieving the pressure to make all books "safe" in the eyes of left activists.
Of course, there remains the barrier that most individuals in the publishing industry are hard-core leftists that fervently follow the whims of leftist activists. It's standard these days for books to be edited by "sensitivity readers", who point out all potentially offensive things from a left-wing activist viewpoint, before publishing is permitted. (Source: am deeply involved in the writing and publishing community, and have had many friends go through the sensitivity reading process.)
Shifting away from this mentality is going to take a major push by the reading public, who will need to make it clear that they are not okay with a small minority enforcing their worldview through censorship, regardless of whether the censorship is coming from the right or left wing.
It depends a lot on the publishing house and editor you're working with. I have heard of editors who allow for sensitivity reader suggestions to be ignored, and some who are quite militant about enforcing all suggestions from sensitivity readers.
There seems to be little rhyme or reason behind how strictly the edits are enforced. (e.g.: One friend got to keep a very crude weight-related joke that a sensitivity reader wanted to remove, because she convincingly argued that it was needed to show-case the character's dark side. Another friend was aggressively forced to remove her teen protagonist's insecurity over having freckles, because it "encouraged low self-esteem and depression" and would be "damaging" to the audience.)
The difficulty with disagreeing with edits of any sort is that publishing is a reputation based industry. So if you put up a huge fuss and escalate issues up the chain of command, and possibly even involve the public, there is a chance you can resist even the most aggressive attempts to edit your work. But you will absolutely ruin your chances of another book deal.
For this reason, it's frustrating to hear the typical retort of, "Well no one's actually forcing authors to change anything, and they have the ability to protest, so it can't be censorship." This is like telling a junior engineer at a large company, "Well no one forced you to write that code. You had the chance to disagree with the design and write the program differently." Sure, no one physically forced them to write the code, but did they really have the option to balk at the design handed down from senior engineers and management? Of course not. It would be career suicide.
As someone who works in the energy field, I have been stoked to see these types of advancements in the past few years. When I first got into this field and would research green energy products, there was a limited field of players. Now there are so many start ups coming up with brilliant products that I can't even keep track! What a wonderful problem to have.
One of my favorite books is "The Wizard and the Prophet", and it's great to see more and more companies following in Norman Borlaug's footsteps and finding new ways the science/tech fields can serve humanity.
If anyone out there is feeling a bit down about the general state of the tech industry, I highly encourage you to look into jobs in the green energy field. It's an exciting space filled with lots of passionate, mission-driven folks. (And, in case you're wondering, most of us aren't the neurotic, perpetually angry types that dominate the activist space. We're pretty chill people who just want a healthy and affordable planet.)
> If anyone out there is feeling a bit down about the general state of the tech industry, I highly encourage you to look into jobs in the green energy field. It's an exciting space filled with lots of passionate, mission-driven folks. (And, in case you're wondering, most of us aren't the neurotic, perpetually angry types that dominate the activist space. We're pretty chill people who just want a healthy and affordable planet.)
I’d second this - I’m not in green energy, but I am in a field that looks to have a substantially positive climate/environmental impact. If you’re feeling particularly existential about the world right now, there’s a real sense of relief from knowing your work is aligned with your values and where you want the world to go.
i'd love to have your optimism. whenever i looked at the job market in this area ("green" tech) most, if not all, of what i found was around carbon offsetting, which is something that has failed to convince me so far
Carbon offsetting is needlessly and cynically attacked by the same people who talk about wind power killing birds or not recycling the blades.
Yes, it's not a perfect unicorn magic solution, but the basic idea of putting a price on carbon and letting the genuinely hard to decarbonise sectors pay for the low hanging fruit in other areas is deeply powerful.
If you think that market forces are a powerful tool, then carbon offsets are a similar thing.
In many ways it's "effective altruism" for carbon (though that movement is under a bit of a cloud lately).
That's one type of offset, by one provider. And others dispute the 90% figure since in the study it 10% that are rated good and only a third "useless" (for carbon, they may have biodiversity co-benefits).
So yeah, not magic, just a boring bit of economics that lets people work together efficiently via a market based process, with the chance of waste and graft that entails if not regulated well.
"Not regulated well" is almost guaranteed when it's an invented market. There are bound to be infinite loopholes, as people aren't good at creating markets with no missing or unintended consequences.
All markets are "invented". That's why countries have regulations about how how much of various poisons you can put into baby food. Otherwise people will sell you poisoned baby food because that is sometimes cheaper than non poisoned baby food.
Private property is a regulation. You can't even barter if the other guy has no concept of ownership, he'll just take it from you. Markets are invented by regulations.
I think at this point we're talking about laws, not regulations. You can come down off a mountain with a couple of stone tablets and that's enough to get going with barter, as barter is individuals deciding how much things are worth to them.
Conversely, the carbon market is invented: there is no natural value of the negative externality of pollution, so we invent one. And, as it's invented, it's riddled with holes.
> Carbon offsetting is needlessly and cynically attacked by the same people who talk about wind power killing birds or not recycling the blades.
well i don't really understand how you can lump all those together but ok... they're still not the same.
as others have pointed out, it doesn't seem hard (or hard enough) to scam in this business sector - i.e. having the same assets accounting for different offset purchases, or just conflating assets bought for different puroses with offsetting. furthermore, it just deviates us from what should be the true goal: reduce fossil fuel consumption. not to mention how big business just offload this shady business cost to the end consumer.
Youtube clickbait is exactly the kind of thing where "Downside of thing you thought was good" is likely to thrive. It's practically a genre (there's also "positive aspect of thing you thought was bad" for balance).
Fundamentally, there's a paper trail. Disney has bought credits from The Nature Conservancy. If it turns out that those credits are a scam, then we know who sold them and who bought them. There's a whole business plan setting out the case that can be reviewed by independant third parties or governments as time goes by. There's an actual forest you can visit. We can see what a market price is, and be suspicious of people claiming to have a low price compared with anyone else. We can sue companies that claim to provide one thing but don't deliver.
This is all very boring and nerdy. But it works, after a fashion. Even the videos you link, they're only really able to exist because of that paper trail.
I was going to compare this with the "additionality" debate around buying "green" energy, and remembered that Google did some good work on making sure they were getting additionality from the renewables they purchased, here's their stance on the offsets they buy:
If Google doesn't fit then there's probably some organisation that you trust to not mess this up that has done similar.
> Conclusion
>In addition to improving our efficiency and investing in green power, we will continue to purchase
carbon offsets to bring our carbon footprint down to zero. However, not all carbon offsets are
created equal and ensuring that a carbon offset represents actual greenhouse gas reductions can be
a long process.
> Carbon offsets are still very new. In fact, it’s entirely possible that how we offset our emissions
a few years from now will be very different from how we do it today. Our offsets may be more
personalized, more local and rely on emergent technologies that have a global impact. Google hopes
to be part of the evolution of these new offsets, and will continue to foster current offset projects
through research, collaboration and investment
> If it turns out that those credits are a scam, then we know who sold them and who bought them.
This falls under the category of "not even wrong." The problem with carbon offsets is that they are irrevocable. Company A buys offsets from Provider Z. They do so because Z offers them for the lowest price -- say, alleged reforesting in the Brazilian Amazon. Years later, it turns out that no trees were planted, and Z was a scam from the beginning.
Company A doesn't care! Carbon offsets are irrevocable under every scheme. A got to produce about as much CO2 as they were going to anyway (not much less, because the fake carbon offsets they purchased were artificially cheap bc they were a fraud), and Provider Z gets away with it bc they live in a developing country with poor enforcement of regulations.
As long as offsets are irrevocable, there will be an inevitable race to the bottom to sell cheap, fake offsets. Carbon offsets are a great example of a fake solution that economists love but do nothing to solve the underlying problem.
Poor countries are more likely to find their transition to clean energy being funded by rich countries paying carbon fees and looking for impactful ways to cut carbon.
Less carbon, more green energy, everyone is happy.
It's insisting that rich people can't offset that leaves both the rich and the poor (both between and within countries) worse off, as in other situations without market pricing to allow trade.
If anyone out there is feeling a bit down about the general state of the tech industry, I highly encourage you to look into jobs in the green energy field.
There are so many things this world needs smart people doing. A slowdown in the tech sector might just be the catalyst.
I'd love to know as well, especially for software engineers.
I'm wondering if there are opportunities in this field for distributed systems experts, but not a necessity.
There's a lot of adjacent software industry. E.g. I work for a company that makes management software for offshore wind farms. The channels to find jobs in this field are the regular ones like LinkedIn.
OP hit on a really interesting point, and if he's referring to the same thing I've seen, the issue isn't "difference." I think the issue is the degree of difference.
The place I volunteer at has quite a few teen volunteers, and I've noticed I can immediately spot the chronically-online teens (and there's a lot of them), because it's like they're from a different planet. They use language I don't understand, their humor revolves around memes I don't understand, they constantly reference people/events from their favored internet niche, and then completely lose interest in talking with people who don't understand their niche.
I think this ends up decreasing the amount of difference and diversity teens are exposed to, because when there are a million [insert niche here] fans online who "totally get you", there is far less incentive to make friends in the real world. And if you do make real-world friends, they likely are going to be part of that same niche, and have the exact same language/interests/etc that has been crafted by the online community. (It's honestly a bit eerie how good these niches are at creating cookie-cutter teens. I've had bizarrely similar conversations with kids who have never met each other, but are into the same niche. And it's not just their interests that are similar, it's their attitudes/outlooks/political views/etc.)
I find this really concerning, because it's important for teens to be exposed to a wide variety of people/experiences and be encouraged to respect them all. And that's hard to do when you're in a bubble of people who are identical to you, and have very little incentive to branch outside of that bubble.
I think back to my teen friend group, and it was a hodge-podge of computer geeks, theatre kids, journalism nerds, etc. I got so much benefit from having such a diverse friend group, and it's concerning to see those types of friend groups becoming rarer.
I appreciate this comment and generally agree. I have observed that teens themselves seem not to understand each other to a greater degree: perhaps the effect is not limited teenagers. Increased inability to relate in ways that allow ideas to be shared, and importantly -- challenged in real settings.
Kelseyfrog, I'm sorry, but I'm deeply struggling to understand how you can interpret thegrimmest as sealioning, and I think you need to re-evaluate your tone and the way you're framing his responses.
The parent reply that started this discussion says they believe it is wrong to suppress speech that is not a call to violence. You responded saying that this logic doesn't work if speech that is non-violent can still lead to violence, with the insinuation being that you are okay banning speech that falls into this category of "not violent, but leads to violence." Which is a perfectly valid point, and I believe a strong argument!
thegrimmest has then attempted to point out that it can be extremely difficult to pinpoint what speech falls into this category, and stated that these sorts of bans can be inappropriately used as tools of oppression by authoritarian governments. He asks how you feel this sort of ban could be properly implemented, given these potential problems. This is a very on-topic response; you appear to be proposing that the government expand its abilities to censor speech, and thegrimmest is asking how we could ensure the government doesn't abuse this power if it is implemented. Given the current state of the world, and the authoritarian trends rearing their head in dozens of countries, this criticism is valid, on-topic, and very far from sealioning.
Rather than try to address his concerns by proposing ways this sort of ban could be thoughtfully and morally implemented, you immediately chose to accuse him of sealioning, which is a form of trolling and a pretty serious accusation. He gamely attempted to appease you by rephrasing his wording, only for you to become snarky, smug, and accuse him of repeatedly pestering you with questions--when you had directly asked him multiple times to please rephrase his questions!
As someone who has experienced sealioning, and finds it quite infuriating, I am genuinely baffled how you can see this interaction as thegrimmest sealioning. I think you may need to take a moment to re-read the HackerNews code of conduct and remember that engaging in good faith is a must.
If you don't wish to engage with thegrimmest's criticisms, that is 100% okay. You can always say, "I support banning speech in this category, and I'm not interested in discussing the possible ways a government could abuse this power." But you cannot pretend that thegrimmest is somehow morally at fault for wishing to discuss government abuse, because presenting these sorts of on-topic and civil criticisms is exactly what these forums are for.
You're a very intelligent person, and I think you raise some great points. I almost always enjoy reading your comments and listening to your insights. But they get lost when you engage like this. I see from your previous comments that this isn't the first time this has happened; other commenters have complained of you being rigid and accusatory. It's probably worth taking a step back and examining why this is a recurring theme in your interactions on here.
Thanks. You're right. I'm not the right person to debate this appropriately. I can't hold that space and be a participant in it at the same time. I have too much skin in the game.
Kudos to you for bucking the trend and encouraging your kids to do things like spending afternoons romping around outside!
Complete anecdata, but the parents in my close friend group are split between "parents with a more free-range kid mindset" and "typical upper-middle-class parental paranoia."
The free-range kids are mostly happy-go-lucky, emotionally stable, and thriving. Almost every single kid over the age of 10 with paranoid parents is diagnosed with a mental health condition of some sort. I mean I literally can only think of one who is not in therapy or taking medication. I think the isolation and lack of unsupervised group activities that you describe is a big part of it.
One of my more paranoid friends made a judgmental comment recently regarding my other friend's daughter not being in therapy. I was extremely confused and asked if the kiddo was having emotional issues. Her response was, "Well not yet, but 12 is a very stressful age, and I think that when you have the money to do so, it's just good parenting to ensure your kid is talking to a therapist on a regular basis."
The level of paranoia needed to believe that every single perfectly stable 12-year-old needs weekly visits with a mental health professional to ensure their health and safety, and that not supplying this is neglectful, is just... bizarre.
I cannot help but believe this sort of behavior is severely damaging the psyche of these kids. And I also don't see how it can't be hurting the parents as well. Imagine how incredibly stressful it must be to be a parent who believes every stranger, every walk around the block, and every pre-teen mood swing is a serious danger to their child.
Our society is way too tolerant of that kind of behavior. It's similar to how there are still occasional people wearing masks, even outdoors. It needs to become socially acceptable to tell people they're being paranoid and weird, in the same way they feel it's acceptable to tell others they're not paranoid enough.
Masks are a bit trickier, since some people are severely immunocompromised or have loved ones who are immunocompromised. If you are undergoing chemo, or your parent is on hospice care, it actually makes sense to keep wearing a mask everywhere, and doctors are encouraging this (not just to defend against COVID germs, but all germs).
But as for outside masks, I agree, it's just straight up unscientific. Especially when people are wearing flimsy cloth masks that do little to ward off COVID germs in the first place! Although I know some people keep them on outside if they're walking between buildings, just because it's easier than taking it on/off constantly.
So anyway, masks kind of fall into that category of "I ain't gonna judge if I don't know your exact situation."
But I agree, it would be nice to be able to tell my friends who are perfectly healthy with no at-risk loved ones, hey, you really don't need to keep wearing a mask outside for the rest of your life. Both because it's silly, and because it seems genuinely damaging to their mental health... I have a couple friends who still get anxious/upset when someone gets within 6 feet of them without a mask on, and it's just a needlessly stressful way to live that is taking a very, very serious toll on their mental health.
