It is very easy to say that people are dying of cancer because of anti-science beliefs during treatment, I do not refute the claim that the outcome would be better if this individual listening to the best medical advice available.
However, I do think the blaming the patient is a distraction. I see more anti-science from industrialists and politicians when their industries receive scientific recommendations for regulation.
There was more anti-science in the decades of poor policy decisions that lead up to a young woman getting non-Hodkings lymphoma than anti-science displayed by her in the moments when she had to choose how to respond to it.
She isn’t just someone who fell to the anti vax beliefs but daughter of a prominent anti science influencer, hence the discussion of their beliefs in relation to this
It's not a zero sum game. You can and do have both anti-science attitude: the self-serving profit-increasing from the industrialists, and the self-aggrandizing alienating from the alt-news consumers. And politicians will follow whatever pays them and votes for them - aka both of those.
My brother passed away from AML (acute myeloid leukemia) almost two years ago. His quality of life was dismal on treatment, he was constantly vomiting, mouth sores, unable to sleep but very tired, couldn't see his two young children and locked away in a hospital ward. His wife had to make a huge effort to see him consistently because she couldn't bring the kids and had to find babysitters. He made the decision to stop treatment because of that. His chances were low anyways and he pursued 'alternatives' because it was better than nothing. Even if the main benefit was to make him and his family feel like he wasn't completely giving up.
Your situation is different from the one in the article. In your brother's case, it was end stage and so forgoing treatment to improve QoL makes total sense. In the article the sister actually had a high chance of survival (so opposite of end stage) but still chose not to undergo treatment.
Steve Jobs is probably the most famous victim of his own superstitions.
He had a pancreatic cancer. It was detected early and it was one of the rare cases that had a good prognosis. He changed his mind only after it was too later and regretted his bad decision.
> The children absorbed outlandish ideas, including that the Royal Family were shape-shifting lizards, says Gabriel. "As a young child, you trust your parents. So you see that as a truth," he says.
At what point does someone step in and call this child abuse, at the very least these parents are not capable of raising their children in a safe manner.
> Kate Shemirani styles herself as "the Natural Nurse" on social media
And therein lies our main issue. People on social media who are amplified and given confirmation biases from the algorithm with basically zero moderation now.
Maybe it's callous to say but seems like Darwins law should settle these things.
The algo ironically also could give them feedback about the expected outcomes of those posts. 72 % of People who posted this ceased posting within a year. 33% where disconnected feom loved ones after a loved one passed away following giving this advice. Do you want to continue in rgis path?
The algorithm is self preserving, its goal seems not to inform but to generate engagement, how and what type of engagement seems to be irrelevant and secondary.
It's genuinely why I view HN as one of the last bastions of good discussion.
The question of when misinformation is child abuse might be more complicated than you think.
Imagine a family brings up their children worshipping the “Sun god” Ra, believing he will guide them in the afterlife, performing rituals and observances of his teachings speaking of always seeking his favor and following his guidance.
Absurd, silly, and dangerous Right? Ra is of course made up bullshit invented by some priests in Egypt thousands of years ago.
But knock one word off that description (re-read it with “sun” struck through) and people think it’s entirely reasonable to indoctrinate their kids into that system.
Indoctrination into the approved made up system of belief is fine. “What is the approved system of belief?” Any sane person will run screaming rather than go on record answering that question.
at the same time when you tell the children that santa is not real. /s
this is what school is for. teaching children to be critical and investigate claims no matter where they come from.
incidentally, this is the reason why homeschooling is outlawed in germany. to prevent parents indoctrinating their children without the children getting a chance to learn about alternatives.
That is absolutely not what school is for. It would be really nice if it were, but it is not.
School is for creating the next generation of obedient workers - the entire modern model of schooling emerged from the Industrial Revolution in order to produce better factory workers.
Claims are handed to you at school as truth. Questioning them will get you detention.
Ironically, I am homeschooling my daughter because I want her to be a critical thinker who demands hard evidence for anything presented to her - not someone who doesn’t know which century the Second World War happened in, and that it was maybe the Chinese or the Australians who started it, not sure, but they were 100% bad and we were 100% good. Sounds ridiculous, I know, but these are the educational outcomes where we live, where most kids finish school at 13. I could barely pick my jaw up from the floor when witnessing this debate.
I had a handful of teachers who encouraged independent thought - the majority however couldn’t explain or justify what they taught except with a meter ruler or a dunce’s cap.
That's hilarious. Germany has the complete reverse problem; the indoctrination is largely happening at school. It's probably one of the worst countries in the EU on that matter.
It's also an extremely stupid and authoritarian law. The number of parents that would homeschool their children is rather low (as long as school is free) and even if they wanted, they probably couldn't because both parents need to work nowadays.
Homeschooling is largely a rich people or alternative people affair, pretending that significant indoctrination can happen there is just a nice excuse to better subject children to the state indoctrination.
Also, this article is largely proof that public schooling is largely irrelevant when it comes to made up belief.
But I guess we are still stuck in the (very wrong) blank state idea around human behavior/learning/growth. It's not going well.
I'm seeing this with my cousin currently. Her husband as well as her brother are peddling vitamin injections, physiotherapy, keto diets, for what is essentially late-stage lung cancer. She needs sugar - energy - to build up her stores so that she can walk into a chemotherapy clinic, but they're (perhaps rightfully) scared that they'd just be feeding the tumor instead of her.
Doctors orders should be questioned, of course, since they're also trying to reduce their own liability should anything go wrong. But this cynicism is being diverted into desperate alternatives, into the inklings of what is looking like outright superstition.
I understand it to some degree, of course; when a doctor recommends a treatment to slightly prolong your life, vs an expert who promises to completely heal your ailment -- you're likely to go with the so called expert.
I don't know, if the doctor can only provide treatments that extend life for a limited time and may cause significant side effects. I might prefer to forego all treatments and focus on living the remainder of my life to the fullest.
The doctor says you have a few months to live, you are going to try anything. There are some people who accept it but most people hold out hope that some miracle happens until the last moments.
Why should she need sugar to walk? It is perfectly viable to let the muscles burn ketones instead. There is no need to eat carbs (unless there is a problem in the fat digestion system etc.)
Has anyone done an analysis of the prevalence of these "alternative medicines" in countries with free healthcare vs no free healthcare? I keep seeing this stuff coming out of America, but not from somewhere like Scandinavia (possibly because of the language barrier). I do see it a decent amount in the UK, but our healthcare isn't amazing, even if it is free
It proliferated in America because of a law in the 1990s called the DSHEA which greatly loosened regulations on what could be sold and advertised. Before then, all this was illegal. Once it became legal it became a multi-billion dollar industry. So now even if a politician is against it on moral grounds, they are afraid of harming the economy and eliminating all those jobs.
Questioning science is not automatically "anti-science," IMO it's best to remain skeptical and stay focused on the evidence. The fact of the matter is that current "best medical advice" is not the best either in terms of quality of life or prognosis. I've had a remote member of a family lose sight in an eye, develop short term memory issues, and rapidly deteriorate from cancer in spite of following the best medical advice and guided by top physicians. My family is full of physicians, and I see even them questioning traditional methods. I would caution against media's rush to blame anything going against the mainstream narrative as "anti-science" or "misinformation." Yes, there are quacks and morons, but let's not put labels on anyone questioning bad outcomes.
Fair comment. You would think medicine would be evidence-based, but a lot of it is pattern matching and working on the 80/20 rule, given the limited time they have with clients.
> You would think medicine would be evidence-based (…)
Your comment sounds like it refers to the front line contacts with the patient.
It has been a while, but my own experience was that (1) the studies I wanted to see did not exist; (2) the doctor was not forthcoming about their own statistics / outcomes; (3) outcomes were not tracked by anyone past (very small N) year; (4) no access to prior complaints against doctor.
I’ll stop the list there, but when things go wrong it is evident that science is not being done.
The best related published account I know of is of the best cystic fibrosis treatment centers in the country. (Sorry, no reference.)
Someone choosing an alternative cancer treatment than their doctor's recommended treatment and dying is very common, and the most likely culprit isn't social media but someone doing their own research (i.e. google / chatGPT), and going down alternative medicine rabbit holes.
Readit News
However, I do think the blaming the patient is a distraction. I see more anti-science from industrialists and politicians when their industries receive scientific recommendations for regulation.
There was more anti-science in the decades of poor policy decisions that lead up to a young woman getting non-Hodkings lymphoma than anti-science displayed by her in the moments when she had to choose how to respond to it.
He had a pancreatic cancer. It was detected early and it was one of the rare cases that had a good prognosis. He changed his mind only after it was too later and regretted his bad decision.
At what point does someone step in and call this child abuse, at the very least these parents are not capable of raising their children in a safe manner.
> Kate Shemirani styles herself as "the Natural Nurse" on social media
And therein lies our main issue. People on social media who are amplified and given confirmation biases from the algorithm with basically zero moderation now.
Maybe it's callous to say but seems like Darwins law should settle these things.
It's genuinely why I view HN as one of the last bastions of good discussion.
This was my thinking as well.
Imagine a family brings up their children worshipping the “Sun god” Ra, believing he will guide them in the afterlife, performing rituals and observances of his teachings speaking of always seeking his favor and following his guidance.
Absurd, silly, and dangerous Right? Ra is of course made up bullshit invented by some priests in Egypt thousands of years ago. But knock one word off that description (re-read it with “sun” struck through) and people think it’s entirely reasonable to indoctrinate their kids into that system.
Indoctrination into the approved made up system of belief is fine. “What is the approved system of belief?” Any sane person will run screaming rather than go on record answering that question.
at the same time when you tell the children that santa is not real. /s
this is what school is for. teaching children to be critical and investigate claims no matter where they come from.
incidentally, this is the reason why homeschooling is outlawed in germany. to prevent parents indoctrinating their children without the children getting a chance to learn about alternatives.
School is for creating the next generation of obedient workers - the entire modern model of schooling emerged from the Industrial Revolution in order to produce better factory workers.
Claims are handed to you at school as truth. Questioning them will get you detention.
Ironically, I am homeschooling my daughter because I want her to be a critical thinker who demands hard evidence for anything presented to her - not someone who doesn’t know which century the Second World War happened in, and that it was maybe the Chinese or the Australians who started it, not sure, but they were 100% bad and we were 100% good. Sounds ridiculous, I know, but these are the educational outcomes where we live, where most kids finish school at 13. I could barely pick my jaw up from the floor when witnessing this debate.
I had a handful of teachers who encouraged independent thought - the majority however couldn’t explain or justify what they taught except with a meter ruler or a dunce’s cap.
It's also an extremely stupid and authoritarian law. The number of parents that would homeschool their children is rather low (as long as school is free) and even if they wanted, they probably couldn't because both parents need to work nowadays. Homeschooling is largely a rich people or alternative people affair, pretending that significant indoctrination can happen there is just a nice excuse to better subject children to the state indoctrination.
Also, this article is largely proof that public schooling is largely irrelevant when it comes to made up belief. But I guess we are still stuck in the (very wrong) blank state idea around human behavior/learning/growth. It's not going well.
This is a really nice idea. If only teachers were paid enough to be able to give their care. In any part of the world.
Doctors orders should be questioned, of course, since they're also trying to reduce their own liability should anything go wrong. But this cynicism is being diverted into desperate alternatives, into the inklings of what is looking like outright superstition.
I understand it to some degree, of course; when a doctor recommends a treatment to slightly prolong your life, vs an expert who promises to completely heal your ailment -- you're likely to go with the so called expert.
Dead Comment
Your comment sounds like it refers to the front line contacts with the patient.
It has been a while, but my own experience was that (1) the studies I wanted to see did not exist; (2) the doctor was not forthcoming about their own statistics / outcomes; (3) outcomes were not tracked by anyone past (very small N) year; (4) no access to prior complaints against doctor.
I’ll stop the list there, but when things go wrong it is evident that science is not being done.
The best related published account I know of is of the best cystic fibrosis treatment centers in the country. (Sorry, no reference.)
Dead Comment