Our sister died because of our mum's cancer conspiracy theories, say brothers

https://www.bbc.com/news/articles/crenzwyvpn1o

by muglug • 1 year ago

56 48 1 year ago

bbc.com

brightmood• 1 year 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.

tetris11• 1 year 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.

randomtoast• 1 year 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• 1 year 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• 1 year 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.)

kelipso• 1 year 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.

josefritzishere• 1 year ago

Is it premature to blame RFK?

bilekas4• 1 year 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.

fullshark2• 1 year ago

This isn't blaming RFK, it's yet another traditional media piece blaming social media for something bad happening.

runjake• 1 year ago

This took place in the UK. RFK is in the US.

more_corn4• 1 year ago

It is never premature to blame the purveyors of nonsense for the suffering that their nonsense causes.

fullshark2• 1 year 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• 1 year ago

True - but once you start engaging with any of this stuff on social media, you just get pushed more and more.

more_corn4• 1 year ago

Doing your own research is code for “I saw this unsubstantiated bullshit on social media”

voidUpdate• 1 year 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• 1 year 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.

giarc• 1 year 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"?

salawat• 1 year 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.

roryirvine• 1 year ago

It's one of the more common fringe beliefs in the UK, having been popularised by a notorious conspiracy theorist, David Icke: https://en.wikipedia.org/wiki/Reptilian_conspiracy_theory#Da...

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.

iamthepieman• 1 year 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.

kingofheroes• 1 year ago

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.

larrled2• 1 year 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• 1 year 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.

larrled2• 1 year 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.

nabla9• 1 year 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• 1 year ago

Probably one of the better things he did was admit as much and talk publicly about his mistake.

bilekas4• 1 year 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.

mnmalst• 1 year ago

Maybe it's callous to say but seems like Darwins law should settle these things.

This was my thinking as well.

ashoeafoot2• 1 year 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?

bilekas4• 1 year 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.

more_corn4• 1 year 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.

em-bee5• 1 year ago

At what point does someone step in?

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.

bilekas4• 1 year ago

this is what school is for. teaching children to be critical and investigate claims no matter where they come from.

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.

madaxe_again• 1 year ago

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.

seec2• 1 year ago

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.

hermannj314• 1 year ago

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.

soco• 1 year 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.

lovich• 1 year 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

herdcall• 1 year 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• 1 year 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• 1 year 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.)

more_corn4• 1 year 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.

Our sister died because of our mum's cancer conspiracy theories, say brothers

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