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.
lovich · 28m ago
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
soco · 3h ago
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.
iamthepieman · 4h ago
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.
nabla9 · 4h ago
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.
seanmcdirmid · 1h ago
Probably one of the better things he did was admit as much and talk publicly about his mistake.
bilekas · 4h ago
> 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.
ashoeafoot · 1h ago
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?
bilekas · 16m ago
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.
mnmalst · 3h ago
> Maybe it's callous to say but seems like Darwins law should settle these things.
This was my thinking as well.
more_corn · 29m ago
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.
tetris11 · 5h ago
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.
kelipso · 2h ago
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.
randomtoast · 4h ago
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.
reginald78 · 16m ago
Don't forget the added financial cost to your surviving family from chasing a few more months or a miracle cure if you live in the US.
xenonite · 4h ago
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.)
voidUpdate · 4h ago
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
Apreche · 4h ago
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.
herdcall · 3h ago
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.
gadders · 2h ago
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.
fn-mote · 1h ago
> 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.)
fullshark · 4h ago
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.
ljf · 4h ago
True - but once you start engaging with any of this stuff on social media, you just get pushed more and more.
No comments yet
brightmood · 5h ago
This particular nature of making quick conclusions can be found everywhere.
That article is no shocker. It exposes the same weakness in openly questioning things and using your brain.
Related: People argue like this:
- "All people who make stairs hating on wheelchair users"
- "Men who don't like other men crying or showing emotions are hating all women"
The problem isn't just conspiracy theories - it's this broader pattern of binary thinking that refuses to acknowledge nuance or complexity. When we jump to these extreme conclusions, we lose the ability to have real discussions about difficult topics.
These, or similar quick conclusions are flawed to the core and hurt those around.
josefritzishere · 4h ago
Is it premature to blame RFK?
runjake · 1h ago
This took place in the UK. RFK is in the US.
fullshark · 4h ago
This isn't blaming RFK, it's yet another traditional media piece blaming social media for something bad happening.
bilekas · 4h ago
> Is it premature to blame RFK?
Nobody was blaming RFK for this particular case, reading it you can see the reason RFK was called out is because he's the main health 'professional' representative who, himself, spout debunked lies. Again giving confirming biases to other people who believe this nonsense.
Where he should know better with the access to the best professionals in the world, he still spreads misinformation, of course people will call him out.
giarc · 4h ago
Most conspiracy theories at least could be true (ex. vaccines cause autism, wifi/5G is dangerous, 9/11 was an inside job), but how do people make the jump to "Royal Family were shape-shifting lizards"?
The theory is loosely based on the Protcols of the Elders of Zion, only with lizards instead of Jews. It's complete nonsense, but Icke was fairly well-known in the UK at the time so his association with it gained it more attention than it would have got otherwise.
salawat · 4h ago
Jungian symbolism. Royalty is an institution composed of humans (faces change over time, shape shifter) that think, act, and are treated differently than anyone else; generally making decisions that can severely change the trajectory of human lives around them (reptiloid, cold blooded).
It's only hard to make the leap if you're too biased toward rational faculties. Your irrational faculties can make the leap fairly trivially.
larrled · 4h ago
It is interesting we now call this stuff “conspiracy theories.” We used to talk of “snake oil” or people would make jokes about yoga and health food in the 70s. Currently it’s taken on a newspeaky sort of political flavor with the phrase “conspiracy theory.” In the 90s it was “alternative health” or “eastern medicine.” Interesting how views changed on ways of knowing/cultural relativism in such a short period of time.
karolinepauls · 4h ago
The way loosely-defined "we" call(ed) things in different periods of time isn't a good basis for conclusions, especially in topics in which there was basically no good science 50 years ago.
larrled · 3h ago
We agree it’s not a constant “we.” And also a lot of the current usage is secondary to pandemic politics where certain demographics and career slots benefitted or alternatively were hurt by covid related policies. My conclusion is only that language and culture change and influence one another.
more_corn · 1h ago
My mother died because of alt health misinformation.
She had melanoma and the thing to do with that is to cut it out immediately. She delayed, considered alt health options for a month or three and by the time she got around to it the cancer had metastasized and there was nothing to be done.
OrvalWintermute · 5h ago
“ Gabriel and Sebastian Shemirani watched with concern as their mother Kate rose to notoriety during the pandemic, eventually getting struck off as a nurse for promoting misinformation about Covid-19.”
The “c19 misinformation” trope has aged so badly.
Was the misinformation data that has proved to be correct over time?
The industry’s C19 Push and protocols have been in many ways turned out to be nonscientific hog wash, and not based in reality.
A child in my daughter’s daycare suffered febrile seizures and experienced an anoxic brain injury because the vaccine wasn’t safe.
As the husband of an accomplished dual board certified physician our decision to approach this naturally turned out to be correct.
IAmBroom · 5h ago
> A child in my daughter’s daycare suffered febrile seizures and experienced an anoxic brain injury because the vaccine wasn’t safe.
Versus: ONE MILLION AMERICANS DEAD because they didn't have vaccination.
This is the worst, stupidest example of anecdata possible.
Teever · 5h ago
Don't take the bait. Flag and move on.
No comments yet
OrvalWintermute · 1h ago
If people needed a vaccine, and their comorbidities indicated as much, then that should have been their own medical decision.
That wasn't what happened though.
I spent extensive time crunching the JHU numbers which were some of the best at the time, and it was an overly broad push for those even to whom it was contra-indicated. The attempt to push it on people with known allergies to vaccine ingredients happened to both my Physician wife, and one of her colleagues.
As such, it represents the worst of draconian medicine, and it has set back trust in certain parts of the medical industry by 100 years.
al2o3cr · 5h ago
A child in my daughter’s daycare suffered febrile seizures and experienced an anoxic brain injury because the vaccine wasn’t safe.
Also, Old Man Withers turned me into a newt!
OrvalWintermute · 2h ago
This response to an actual injury a child incurred is tone deaf and while anecdotal is accurate.
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.
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.
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.)
No comments yet
That article is no shocker. It exposes the same weakness in openly questioning things and using your brain.
Related: People argue like this:
- "All people who make stairs hating on wheelchair users"
- "Men who don't like other men crying or showing emotions are hating all women"
The problem isn't just conspiracy theories - it's this broader pattern of binary thinking that refuses to acknowledge nuance or complexity. When we jump to these extreme conclusions, we lose the ability to have real discussions about difficult topics.
These, or similar quick conclusions are flawed to the core and hurt those around.
Nobody was blaming RFK for this particular case, reading it you can see the reason RFK was called out is because he's the main health 'professional' representative who, himself, spout debunked lies. Again giving confirming biases to other people who believe this nonsense.
Where he should know better with the access to the best professionals in the world, he still spreads misinformation, of course people will call him out.
The theory is loosely based on the Protcols of the Elders of Zion, only with lizards instead of Jews. It's complete nonsense, but Icke was fairly well-known in the UK at the time so his association with it gained it more attention than it would have got otherwise.
It's only hard to make the leap if you're too biased toward rational faculties. Your irrational faculties can make the leap fairly trivially.
She had melanoma and the thing to do with that is to cut it out immediately. She delayed, considered alt health options for a month or three and by the time she got around to it the cancer had metastasized and there was nothing to be done.
The “c19 misinformation” trope has aged so badly.
Was the misinformation data that has proved to be correct over time?
The industry’s C19 Push and protocols have been in many ways turned out to be nonscientific hog wash, and not based in reality.
A child in my daughter’s daycare suffered febrile seizures and experienced an anoxic brain injury because the vaccine wasn’t safe.
As the husband of an accomplished dual board certified physician our decision to approach this naturally turned out to be correct.
Versus: ONE MILLION AMERICANS DEAD because they didn't have vaccination.
This is the worst, stupidest example of anecdata possible.
No comments yet
That wasn't what happened though.
I spent extensive time crunching the JHU numbers which were some of the best at the time, and it was an overly broad push for those even to whom it was contra-indicated. The attempt to push it on people with known allergies to vaccine ingredients happened to both my Physician wife, and one of her colleagues.
As such, it represents the worst of draconian medicine, and it has set back trust in certain parts of the medical industry by 100 years.
Sad!