
I lost my boyfriend to cancer 'conspiracy theories’ - DanBC
https://www.bbc.co.uk/bbcthree/article/72396917-47b0-4aac-856f-e213c3a0c3fa
======
DubiousPusher
If you have someone in your life who is thinking like this and you can get
them to read it I highly recommend "The Emporer of All Maladies".

It's not a debunking book. It doesn't even address alternative treatments at
all. It is a kind of biography of cancer.

I think it can help because it puts faces to some of the people who have
developed cancer treatments over the years. And it really demystifies the work
pharmaceutical researches have done to develop chemotherapy.

[https://www.amazon.com/dp/1439170916/ref=cm_sw_r_sms_apa_i_Z...](https://www.amazon.com/dp/1439170916/ref=cm_sw_r_sms_apa_i_Z3XeFbDJNYEBM)

~~~
Nextgrid
The problem is that reading an entire book takes effort, and the whole reason
why these quack treatments thrive is because people can't be bothered to do
effort (and if they did they would have a very high likelihood of disproving
the quack just based on reading existing medical literature) and want a quick
and easy solution.

~~~
janwillemb
I'm "quick to anger" when quackery is involved, but I don't think this is
correct. Often the conspiracy people think they're well informed. And they
are, but only informed by misinformation.

~~~
ecpottinger
No. I have to agree with the person who says they want a quick and easy
solution. I am in a totally different area where I think people are mistaken,
but if I suggest let's do the math or let's do some experiments to see the
results the excuses start thick and thin.

The fact is these people are too busy doing "magical thinking" when they know
they are smarter than the average person and know something that the general
"sheep" do not know.

But the one thing they refuse to do is test their beliefs in such a manner
that if they are wrong that they will be proved wrong. When they do show
effort it is more do only the things that can prove them right, failure is not
an option for them.

~~~
well_that_sucks
So you're saying that conspiracy theorists don't obsessively research? That's
kinda their thing.. I would definitely say that they think they're well
informed

~~~
baddox
“Research” is much easier when there’s no accountability mechanism for the
claims you’re encountering. People may spend a lot of time watching YouTube
videos, but that’s closer to binging a TV show than actually researching
treatments.

~~~
well_that_sucks
you're missing the point altogether. i said "they think they're well
informed". read it again please

~~~
baddox
You said they obsessively research. I said that what the might call “research”
is not really the way other people use the term.

------
jmcgough
I've seen stuff like this a number of times. Someone gets their opinions
horribly warped by well-crafted YouTube videos and graduates to spending a lot
of time with like-minded peers on Facebook groups, subreddits or discord,
reinforcing those beliefs.

I used to watch a talented gamer on twitch who goes on rants about how covid
is a liberal scam, constantly advocates an all-meat diet ("there's no proof
vegetables are healthy"), and shares YouTube videos on stuff like that. Trying
to tell him otherwise only reinforces his beliefs, and he'll parrot talking
points from videos. Completely soured me on his content and it's just really
sad to see.

When someone lacks the scientific training or education to know whether
something is a conspiracy theory, they can really get pulled in by charismatic
YouTube personalities espousing nonsense. Social media is really poisoning
some peoples' minds.

~~~
fossuser
It’s scary how vulnerable everyone is to this kind of thing.

It makes me wonder what would happen if I watched YouTube videos every day
that were misleading but well produced.

Would I eventually end up the same way?

How damaging is just repeated exposure and reinforcement to this kind of
stuff? Is everyone vulnerable?

Even being scientifically minded and trying to be a good rational thinker, the
way otherwise intelligent people are corrupted scares me.

It makes me extra cautious with what information I choose to expose myself to.

I do take some comfort that I was able to throw religion away even while
growing up surrounded by it as a child.

I hope that means there’s a way to be more resilient to misinformation.

~~~
alfonsodev
> Would I eventually end up the same way?

In theory no, if you have developed critical thinking.

I wonder if critical thinking works like a muscle that we have to train. I
personally check opposite opinions on youtube, but it's scary how youtube
algorithm wants to brainwash me with recommendations on any direction I take,
I use the option of "not interested" a lot, to clean up recommendations.

That and the evident radical polarization, scares me.

~~~
mcguire
Theory and practice are often very different things. It's not hard at all to
find intelligent, educated people, skilled in critical thinking, who believe
very wacky ideas, because those ideas strike some emotional chord with them,
which leads them to simply not see contradictory evidence.

------
gideonparanoid
Coronation Street - a popular TV soap in the UK had a storyline about this
last year [0]. As the storyline played out, the character chose alternative
therapies before finally trying conventional medicine, but it was too late &
she lost her life.

I think it was quite brave of a soap to tackle that, & hopefully it's made
people think if they were considering alternative 'solutions'.

[0] [https://metro.co.uk/2018/11/06/coronation-street-spoilers-
si...](https://metro.co.uk/2018/11/06/coronation-street-spoilers-sinead-
tinker-considers-alternative-cancer-treatment-8040952/)

~~~
stepstop
> the character chose alternative therapies before finally trying conventional
> medicine, but it was too late & she lost her life.

Isn't this the same story as Steve Jobs? I recall reading that on this forum

~~~
asdfasgasdgasdg
It may be that Jobs shortened his life with his rejection of mainstream
treatments, but pancreatic cancer also has relatively poor prognosis even with
optimal treatment. Good thing it's rare.

~~~
fossuser
That’s true, but I think in Jobs’ case he actually had a rare type that is
treatable.

It’s hard to know how much impact his delay had, but it’s possible his focus
on alternative medicine killed him.

[https://en.wikipedia.org/w/index.php?title=Steve_Jobs&mobile...](https://en.wikipedia.org/w/index.php?title=Steve_Jobs&mobileaction=toggle_view_desktop#Health_problems)

> In October 2003, Jobs was diagnosed with cancer. In mid-2004, he announced
> to his employees that he had a cancerous tumor in his pancreas.[158] The
> prognosis for pancreatic cancer is usually very poor;[159] Jobs stated that
> he had a rare, much less aggressive type, known as islet cell neuroendocrine
> tumor.[158] Despite his diagnosis, Jobs resisted his doctors'
> recommendations for medical intervention for nine months,[160] instead
> relying on alternative medicine to thwart the disease. According to Harvard
> researcher Ramzi Amri, his choice of alternative treatment "led to an
> unnecessarily early death". Other doctors agree that Jobs's diet was
> insufficient to address his disease. However, cancer researcher and
> alternative medicine critic David Gorski wrote that "it's impossible to know
> whether and by how much he might have decreased his chances of surviving his
> cancer through his flirtation with woo. My best guess was that Jobs probably
> only modestly decreased his chances of survival, if that."[161] Barrie R.
> Cassileth, the chief of Memorial Sloan Kettering Cancer Center's integrative
> medicine department,[162] said, "Jobs's faith in alternative medicine likely
> cost him his life.... He had the only kind of pancreatic cancer that is
> treatable and curable.... He essentially committed suicide."

~~~
Balgair
By 'insufficient diet' they mean that he decided to eat only fruit. High sugar
intake combined with the pancreatic cancer likely did him no favors and _may_
have taxed his pancreas even more. Such a shame, I'd have liked to see him
grow older and wiser.

------
annoyingnoob
When my grandmother was diagnosed with lung cancer she refused medical
treatment. She did not want to go through the therapy, the medical process was
a worse outcome than death for her. She seemed to just decide that she was
done, resigned to her fate.

My uncle offered her some kind of herbal tea as a solution to her cancer.
Grandma had a worse view of alternative medicine than the actual medicine she
had already refused. I had never seen her so upset with my uncle. Her reaction
has stayed with me.

~~~
TravHatesMe
I find it admirable that she was able to be accepting of her fate. I wish I
could be that strong, although perhaps it comes with age ("I've lived a full
life, I am ready").

I don't believe in naturopathy either, but I wonder if it still has a positive
impact for those whom believe in it, ie. the placebo effect.

~~~
nothal
It's probably easier if your odds are not as good as 50%.

~~~
cko
True, but that may be the perfect opportunity to place hope in these
alternative remedies, which she refused.

I have a family member with lung cancer and when they felt traditional options
have been exhausted, they went full alternative. TCM and such.

------
Nextgrid
> He started documenting his journey on Facebook Lives and grew a huge
> following.

This is a major problem; not only did this stupidity cost him his life but he
also put others at risk.

~~~
lazyjones
It's not fair to say it cost him his life when his survival chance was 50% to
begin with and the first chemotherapy failed to cure him. Nobody can say
whether the outcome would have been better with a second chemotherapy or
perhaps with no treatment at all.

~~~
cwhiz
The first chemo gave him six more years. The 50% estimate was for long term
survival, which is generally considered to be 10-15 years or more. It doesn’t
say what his short term survival odds may have been. Somewhere between 51-99%.

------
egonschiele
Yep. Same thing is happening to me now. My dad got thyroid cancer in 2006. In
2018 it spread to his lungs, and in 2019 to his brain. My parents spend a lot
of time daily researching "alternative therapies". It's terrible to watch it
and not be able to do anything about it.

~~~
klyrs
I was there almost 10 years ago. My dad's cancer had metastasized,
conventional treatments were failing, and a "monk" wandering the cancer ward
offered meditative therapy to the tune of $30,000, up front, no refunds. My
brother and I begged them not to waste their money. The charlatan sustained
his sales pitch for nearly a month before my parents eventually refused him.
My dad lived for another year, and my mom still regrets not "trying" the snake
oil.

~~~
jacquesm
That's so low it is disgusting.

------
DanBC
BBC Three is aimed at the 16 - 34 year old demographic. The article talks
about someone who went all in on alternative therapies and declined mainstream
treatment available on the NHS.

~~~
ansible
I know people that have gone through chemotherapy. Since this was his 2nd
cancer diagnosis, I can understand why he wouldn't want to go through it
again. I can understand why he would so desperately want an alternative.

If I were to be diagnosed with cancer tomorrow, I don't know what I'd decide
for myself. Of it depends on the diagnosis, if it was just a small skin cancer
they could just cut out, sure, let's do that.

But if it was something more pernicious, like the Hodgkin lymphoma, I might
refuse chemo. I may prefer to just get my affairs in order while _not_ going
through chemo, and just trying to appreciate what days I have left. And being
_able to_ appreciate the days I have left, because chemo can really knock you
out. What's the point of getting more months of life, if you can't do
anything?

 _I_ wouldn't put any of my hopes in an alternative medicine cure, but I've
been studying science in various forms for a long time. I have a reasonable
knowledge of what might work and what wouldn't.

~~~
Znafon
> What's the point of getting more months of life, if you can't do anything?

I sympathise with the way you feel, but here he did not refused treatment to
better live the time he had left but chose "alternative medicines" instead.
The discourse in those online communities is not that you should appreciate
the time you have left but that they can heal you.

Those are two very different situations and while the outcome is sadly
identical, they should not be conflated.

~~~
DoctorOetker
> The discourse in those online communities is not that you should appreciate
> the time you have left but that they can heal you.

The sedatives and painkillers, are the biochemical discourse that you feel
like you heal / healed.

When my father was dying from cancer, the doctors said his treatment was
curative not palliative, which is essentially the same discourse you are
offended with.

~~~
Znafon
I'm sorry you had to go through this.

I'm not offended, I'm pointing out how the situation differs.

If doctors gives inaccurate information, it's an important problem that needs
to be discussed.

> the doctors said his treatment was curative not palliative

In the present case, it seems like it was not the case: "At the time, Sean’s
doctors told him he had at least a 50% chance of long-term survival if he
underwent chemotherapy", while the alternative medicines gave false
information: "Sean also relied on "thermographic scans" \- heat images of the
body" or "I’d use words like, 'oh no it’s the Herxheimer’s reaction'".

It seems to me like we are preaching for the same thing, which is to give the
correct information to the patient and let him decide.

------
ilamont
_But after reading a lot online, Sean believed he could cure his cancer by
detoxing and completely changing his lifestyle, avoiding the gruelling side
effects he remembered from chemotherapy._

Strongly recommend reading "The Unwinding of the Miracle" by Julie Yip-
Williams ([https://www.goodreads.com/book/show/39216478-the-
unwinding-o...](https://www.goodreads.com/book/show/39216478-the-unwinding-of-
the-miracle)). A NYC lawyer and mom diagnosed in her 30s with Stage IV colon
cancer, she provides a document of her thought processes as she is confronted
with terminal cancer.

She describes the multiple types of modern medical treatments and trials she
participated in and (with her oncologists' permission) flirts with Chinese
medicine and alternative diets and treatments. It really is unflinching and
uncomfortable look at the disease from a patient's point of view, but also a
beautiful book.

------
anonAndOn
Bob Marley died at 36. His early death may have been avoidable had he not
chosen "alternative" medicine and just chopped off the toe. [0]

[0][https://en.wikipedia.org/wiki/Bob_Marley#Illness_and_death](https://en.wikipedia.org/wiki/Bob_Marley#Illness_and_death)

~~~
mNovak
huh, TIL

------
criddell
If you go on amazon and choose just about any "apricot kernel" product page,
the comments invariable mention people consuming them to treat or prevent
cancer.

In fact, as I typed "apricot kernel" into the search bar, Amazon suggested
"apricot kernels bitter seed for cancer". That seems dangerous to me.

~~~
dredmorbius
That scam's existed since the 1960s:

[https://news.ycombinator.com/item?id=23883134](https://news.ycombinator.com/item?id=23883134)

------
tyingq
Thankfully Google got better at pushing this kind of stuff down. It wasn't
that long ago that they often returned sketchy websites for mainstream type
cancer queries: [https://cdn.zmescience.com/wp-
content/uploads/2017/08/t-goog...](https://cdn.zmescience.com/wp-
content/uploads/2017/08/t-google-cure-for-cancer-top-result-
carrot-1501591007.png)

------
specialist
Everyone involved in this disinformation are murderers.

Instagram hosting false cures (memes) like thermographic scans, coffee enemas,
and other whackadoodle bullshit is profiting from death, misery, despair.

I'd have a wee bit more tolerance for Freedom Speeches™ advocates, and their
specious slippery slope blather, if they acknowledged that rights come with
responsibilities. So go ahead and tell your lies. And then rot in jail.

Similarly, Freedom Markets™ assumes rational actors with perfect information.
I invite everyone who blames the victims to hang out in the oncology waiting
room, see the desperation. Tell me that if it was your child or your husband
sitting there, you wouldn't do absolutely anything, no matter the cost or the
long odds.

------
dleslie
Sounds to me like he was holding on to some sense of control while he was
struggling with losing control to cancer. He'd survived it once already, and
had been given a coins' toss chance at long term survival; in medical terms,
that's a decade and a half more of life. Faced with painful chemotherapy and
likely years of pharmacological interventions that have their own side
effects, he ... took a different path.

I'm thinking it's a safe bet that there's a deficiency in the NHS' delivery of
counseling and mental health services for those facing mortal crisis.

------
luxuryballs
an interesting aspect of this is the aversion to traditional therapy caused by
experiencing it the first time and how much it made him suffer, I wonder how
much of the motivation was due to that versus how much was due to the "false
hope"

I also wonder if this is a argument for there being value in investing in ways
of making chemotherapy less traumatic even though it wouldn't be making it
more effective, just less psychological damage

------
wavepruner
edit: (I say all this as a sick person who was bed-bound for years. I was able
to reverse the course of my illness after studying the work of biochemists
that is considered "alternative")

The attitude in this thread is ableist.

Sick people are intelligent. Sick people are capable. Sick people can feel
what is happening in their bodies. And they have a right to seek treatments
they deem best.

Sick people often seek alternative therapies because doctors do not have any
treatments to offer, or the treatments they do offer have devastating,
profoundly life-altering side effects. Many of these sick people are going to
die anyways. It is cruel to treat them like crazy conspiracy theorists because
they choose to fight back in hopes of a cure.

When it gets to this point it makes sense to strike out on your own. Some have
success. Others do not. But it's a battle that has to be fought unless you
want to just give up and lose the life you had.

I really struggle to understand why healthy people are so hostile towards sick
people who are just trying to survive. Yes, it's sad to watch sick people
desperately seek for effective treatments. But just imagine how hard it is to
be that sick person desperately searching for effective treatments while your
peers treat you like you're crazy, and then simultaneously refuse to provide
any reasonable alternatives.

~~~
derefr
> or the treatments they do offer have devastating, profoundly life-altering
> side effects.

One of the foundational principles I use to reason is "if there was a free-
lunch (i.e. a higher-ROI solution—more reward for less risk), then anyone
truly motivated to _solve the problem_ would have switched to it, or at least
added it to their offering as an extra hail-mary on top of their current
approach. Given that they didn't, the free lunch must either not be free (i.e.
no less risky), or not be much of a lunch (i.e. not rewarding.)"

Yes, in this case, you've got a _system_ with mixed motivations; the FDA isn't
motivated to solve problems, so there might be some beneficial drug that isn't
_on the market_. But that doesn't mean that your doctor in particular—someone
who _is_ motivated primarily to solve your problem—won't still tell you about
such drugs, and help you to acquire them through grey-market channels. Doctors
do this all the time—they get patients into drug trials, order in drugs from
the medical systems of other countries, acquire new-old stock batches of drugs
no longer produced, etc. They also will just tell you to eat a certain food or
take a certain supplement as your "prescription", if doing that is a higher-
ROI solution than any drug.

If doctors are only offering you treatments with devastating side-effects,
that's because those are the highest-ROI treatments that exist. Doctors
_always_ prioritize safety over benefit[1]; the only time they offer unsafe
treatment is when there _is_ no safe treatment—or at least no safe treatment
that pays for the costs of going through it by actually having a non-zero
likelihood of helping you.

[1] For example, doctors use known placebo-equivalents as the first-line
treatments for many psychiatric conditions, because placebos have no potential
risks; so even if the likelihood of remission from placebo is low, as long as
it's higher than zero (which it usually is in psychiatric conditions), doctors
want to first make sure you aren't someone who _would_ go into remission from
placebo, before moving onto trying to treat you with drugs that actually do
something (and therefore have risks.)

~~~
wavepruner
I've seen about 50 doctors. I have extensive first hand experience, and what
you're saying is not common at all. This is in the USA, although I have many
European friends with similar experiences. Universal health care doesn't cover
anything but the most basic (read: ineffective) treatments.

Are you sick? Because millions of sick people disagree with you. You can't
read about our experience in a book and tell us how things actually work. You
have to live it.

And if you work in healthcare, well, you only see the sick people who have the
time and financial resources to navigate your tyrannical bureaucracy. And you
won't see any sick people with an illness you don't understand, because we
learn to stop wasting our time and money with you quickly.

"Doctors do this all the time—they get patients into drug trials, order in
drugs from the medical systems of other countries, acquire new-old stock
batches of drugs no longer produced, etc."

Maybe a small small percentage of doctors. Finding them and affording them is
not something most sick people can do.

------
strken
She didn't lose her boyfriend to conspiracy theories, she lost her boyfriend
to the pervasive system of beliefs that prevents people from confronting their
assumptions when it really matters.

Belief in conspiracy theories is the specific issue from a whole class of
problems: what is the most important thing you believe, how do you know it's
true, and is that good enough or do you need to take additional action in case
it's false?

~~~
BEEdwards
Except his stance before the cancer came back was pro medical science, it was
his youtube and facebook research that dragged him into the conspiracy.

~~~
pizza234
This is not clear. Based on the article:

> Soon after Sean found out his cancer had returned, when he had decided he
> was rejecting chemotherapy, the pair found themselves watching countless
> YouTube videos

it seems that he first decided not to undergo chemo, then clinged on whatever
he could.

------
SZJX
I have to say, the article itself is also not very "scientific" though. The
doctors mentioned that chemotherapy would result in a 50% long-term survival
rate. So it is entirely possible that he could have gone with chemotherapy,
and still died in the end. In the same way, the fact that he went with
alternative therapies and died doesn't "prove" that alternative therapies are
all effectless.

Though I also believe that in the case of cancer, until a definitive cure
comes out, chemotherapy is probably as good as we can get, and I don't really
assume any ill intent on the part of the people who invented it, even though
it's perfectly understandable that people (even including Steve Jobs) try to
seek for alternatives when it doesn't work out. But I do think that it is not
entirely meritless to keep a healthy dose of skepticism on the drug industry,
especially given precedents that are plain to see such as the rampant opioid
crisis, as well as the dubious practice of using antidepressants on juveniles
etc. etc.

------
qwerty456127
It would help a lot if popular alternative treatments were studied thoroughly
(including testing on big numbers of human volunteers - every person who
chooses to exercise their right to deny conventional treatment should be
convinced to contribute by letting scientists observe him while he is treated
alternatively) with intention to identify and dissect every humble positive
effect they might cause in any particular kind of patients.

A statement like "there is no credible evidence that thing helps" really can't
convince an alternative treatment enthusiast to give his idea up. "Obiviously"
there is no evidence because nobody no scientist for it.

We need to be able to tell them honestly: "we have tried hard, hundreds
different people were studied thoroughly for this particular treatment, it
really doesn't help or only helps slightly a particular kind of patients you
don't fit, please go and get treated the way proven efficient".

~~~
insickness
The problem is that there are an infinite number of 'alternative' treatments
to any illness. How many of these should be taken seriously and tested?
Typically, if enough people take an alternative seriously, someone eventually
tests it.

~~~
em-bee
all of them?

you are not testing the treatment, you are testing the development of the
cancer in the patient, regardless of which treatment they get.

simply test everyone diagnosed with cancer on a regular basis just like they
get tested when they do the recommended treatment.

in other words, if someone refuses the treatment, don't let them refuse the
tests as well.

------
jackinloadup
Having had 5 others in my life die from traditional cancer treatment I can
certainly understand why people look for alternatives. I've seen brain, skin,
blood cancer as an adult and I'm not sure what other cancers relatives had
while I was growing up.

I've always worried if I would have the strength to fight or cave.

~~~
dredmorbius
Treatments, side effects, and recovery rates vary _tremendously_ among types
of cancer. Some are eminently treatable with virtually no downsides. Some
progress so slowly that treatment is all but unnecessary in most cases. And
some remain tremendously aggressive, treatments themselves debilitating, and
spread or recurrence all but assured.

Cancer is not s single disease, with a common origin, treatment, or outcome.
It is a common characteristic --- malignant cell growth --- with multiple
distinct manifestations, causes, prognoses, and treatments.

Knowledge of what specific condition is being faced makes a huge difference in
response options.

------
pizza234
While this is an interesting subject, the article is very ambiguous abous the
causality relationship:

> Soon after Sean found out his cancer had returned, when he had decided he
> was rejecting chemotherapy, the pair found themselves watching countless
> YouTube videos

It seems to me that he had already decided not to undergo chemiotherapy, and
clinged on whatever it was available, or at least, more subtly, he deeply
wanted to find any other cure that was was not chemotherapy.

While cancer conspiracy theories are certainly damaging, if the reading above
is correct, such theories correlated to his death, didn't cause it - he may as
well have turned to religion, drugs or anything else.

~~~
angry_octet
It is clear from the article that he was told thermoscans of whatever would
track the progress of the cancer, and showed that is was being defeated. There
is a huge placebo effect on mental outlook of a sciencey test like that. It
seems clear that if he had had regular medical scans that showed a growing
tumor he might have changed course.

The alternative medicine community it complicit in many avoidable deaths. It's
a testament to the power of self delusion that they can sleep at night.

------
BrandoElFollito
After lots and lots of discussions I now belive pepole are fundamentally
irrational.

75% of the world population believes that there is a god, despite not having a
single tangible reason to belive that.

Somehow they have a need for simple, rigid explanation for the world. One that
is always right. All these medical scams perfectly fit that paradigm. They are
right, not like these pepole who have a "theory".

Ultimately I think they are happier.

------
mcguire
After reading the article and comments here, I can't help but think about the
times I've seen people here, on Hacker News, writing that they would be happy
to be treated by doctors who get their entire medical education from YouTube.

Yes, it's expensive and difficult, but maybe "gatekeeping" is not so bad,
given the intellectual and emotional pitfalls of being human and the number of
people out there who have it to their advantage for you to believe false
things.

------
lordnacho
IIRC Steve Jobs also went with alternative before turning back to mainstream
before passing from pancreatic cancer.

I find it's hard to blame people when there's such a storm of information
surrounding these things. It's easy to see how even very intelligent people
can pick the wrong remedy.

Also I used to think it was clear cut, but I've run into doctors who believe
in homeopathy.

~~~
thefounder
The more vulnerable/desperate you are the more likely you are to fall into
snakeoil traps. It has little to do with intelligence.

------
vmh1928
This thread could just as easily been titled: "an example of how powerful
cognitive biases are." People come to believe many things and believe them, in
the face of contradicting evidence, even to the point where the belief kills
them.

------
damionx7
There are a lot of wrong theories you can give, then surely it doesnt matter
if its A, B or C. There is only evidence based treatment we can rely on.

------
capn_cabbage
The opposite can be just as dangerous * . "Medlife Crisis" has an [informative
video][1] that explains some of what can happen.

* Edit: I shouldn't have equated the dangers here. This was a bad take. I still believe there are good bits of info provided in the video, but the relevance to this thread is less than I considered and I should have thought more about what I was sharing.

Edit 2: I didn't mean to link to a specific timestamp of the video in the
original link. That has been removed.

[1]:
[https://www.youtube.com/watch?v=yNzQ_sLGIuA](https://www.youtube.com/watch?v=yNzQ_sLGIuA)

~~~
dicytea
I clicked on his COVID-19 video[1] on a whim and while I have not watched it
yet, my god is the comment section alarming. Is the YouTube comment section
always like this when it comes to this topic?

[1]:
[https://www.youtube.com/watch?v=0ts8X3HDtPE](https://www.youtube.com/watch?v=0ts8X3HDtPE)

~~~
capn_cabbage
Yes that seems to be typical. YouTube comment sections tend to be of poorer
quality when the topic is popular or if the channel has a large enough
audience.

------
rvz
> "Cherries neutralize acidity in the body and kill cancer cells," read one
> post on Instagram.

"Memes" on Instagram and other social media platforms disguised as misleading
and inaccurate health advice is the actual problem.

Looks like the word "Meme" in 2020 is now totally different to when it was
used in 2006.

~~~
api
The whole concept of memetics is anti-intellectual pseudoscience. The analogy
between idea and gene is an extreme stretch, and the pop understanding of this
speculation loses whatever more subtle context might be there.

The pop understanding robs ideas of their context in systems of ideas,
rendering them isolated sound bites with no integration or higher level
thought. It promotes a kind of Orwellian "duckspeak" and the utmost short
attention span culture.

I don't think it's a coincidence that meme culture dominated forums originate
all the worst ideas and culture on the Internet. I am looking at Twitter with
its ideological lynch mobs, 4chan, and the popular Reddit forums.

Richard Dawkins originated the concept, and for him it was only a speculation
anyway. In any case Dawkins has never impressed me. He's not the greatest
thinker in evolutionary theory by any measure, and he's among a collection of
people who lost their minds after 9/11\. I have no idea why he is so high
profile.

~~~
ethanbond
You don’t believe that ideas reproduce (transmit between people), mutate (get
re-interpreted during transmission), and then compete against other ideas
(fail or succeed to transmit further/persuade)?

That’s essentially the extent of the analogy to genes and is basically self-
evident.

~~~
varjag
We used to call that 'culture'.

In practice now, memes are exactly what the GP says: manifestation of
simpletons communicating on the Internet.

~~~
baddox
We also knew that children tend to look like their parents long before we knew
about genes.

~~~
varjag
Genetics is a falsifiable scientific theory with predictive force.

Memetics, or whatever you are willing to call it, is not. Mostly a way for
people with frog avatars to sound important.

------
peter_d_sherman
>"'False information online is so dangerous'"

I agree completely!

------
fractionalhare
It's deeply ironic that the BBC served me this ad while reading the article:

[https://ibb.co/CVTw7pT](https://ibb.co/CVTw7pT)

~~~
ColinWright
The BBC does not serve ads, that's a part of the article as a demonstration of
the memes that are out there.

------
mg794613
Why is this article so bend on blaming the meme, as they obviously got the
majority of the false information on forums? I don't believe anyone does this
based on memes.

~~~
Latty
I think that's fundamentally misrepresenting what the article is saying. They
are saying that the memes shared in these communities serve to reinforce and
spread the ideology.

------
samirillian
50% chance of survival. So at least a 50% chance, even by the doctors' own
admission, that she just lost her boyfriend to cancer.

I'm not saying I necessarily agree with naturopathic solutions, but people
seem to lose the ability to reason about probability after the fact.

This is not to make light of the situation, but more to say "don't beat
yourself up" about a bad thing that happened.

~~~
Nextgrid
Their decision to pursue "alternative therapies" reduced that 50% chance to a
guaranteed 0% since at best these therapies don't have any beneficial effect.

~~~
smabie
I'm sure the alternative therapies have some effect. Maybe even a strong
effect sometimes. Placebos are very powerful.

~~~
Nursie
It's very powerful against a subset of problems, usually the kind of things
that are affected by perception of severity, would heal themselves over time
anyway etc etc.

It's far less of an effect, if what I've read is to be believed, when measured
against things like terminal cancer.

------
felixchan
50% of long-term cancer survival is high. He probably should have took it.

Alternative treatments don’t guarantee higher success than modern medicine.
However, if modern medicine puts the chance of survival at < 5%, it’s not a
bad idea to try fringe approaches.

Modern science aims to create a standardized approach for categorized
diseases. Controlled experiments aim to find a magic bullet, but are these
experiments really “controlled”?

Everyone eats differently; everyone shits differently. Different air quality;
stress levels; sleep; metabolism. Not to mention, the body and its disease are
both is ever-changing systems over time. Until we have nano-machines, we won’t
know the true cause and effect of all these variables.

Therefore, the holistic approach* is to use intuition, adaptation, and
nonstandard ways to deal with this recognition. The downside of this approach
is the amount of information and the ability to determine the credibility (eg.
random social media), especially for a layman. However, if one was
knowledgeable enough to read thousands of academic papers, from various fields
(outside of oncology) -- one could develop a more tailored plan for the
individual that accounts for these other factors.

*Holistic approach does not mean disregard of science. It does not mean rejecting standard protocols. It means that one should consider a wider-range of factors, in addition to standard protocols. It is an approach that places more value on breadth.

~~~
Nextgrid
> it’s not a bad idea to try fringe approaches

Fringe approaches would not be considered "fringe" if they were proven to have
an effect. Even if it improves your survival rates by merely 1%, it would be
still used as part of modern medicine if there was nothing else.

The problem is that the quack makes you believe that it will work, so you're
still wasting time trying the "treatment" and potentially suffering its side-
effects (not to mention the financial impact). It's worse than not doing
anything, since at least the latter means you've accepted your fate and can
enjoy whatever time you have peacefully instead of being busy with a quack
treatment.

Furthermore, modern medicine isn't inherently hostile to "alternative
medicine". If you think about it, all the potential treatments being
researched in labs right now (including for covid-19) are still at the
"alternative" stage, and if they end up being proven to work they simply
become "medicine". What modern medicine is hostile to is unproven, or proven
not to work treatments.

If you think you actually have an "alternative" theory that isn't quack, you
are welcome to do your research on it to at least rule out any existing
reasons why it couldn't work (using existing medical literature), and if the
theory still stands by then you are free to engage with the mainstream medical
community or study, become a researcher and then test your theory in a safe
and controlled environment so the outcome is actually valuable (and will
influence further research even if this particular theory doesn't work) and
not just anecdotal evidence.

~~~
felixchan
Testing things is different than practicing things.

You cannot test many things. You also cannot prove many things. Look at
nutrition. Determining the cause and effect of a substance on a human body is
difficult.

Science is aimed at proving things. Sometimes, in life, that luxury is not
available.

~~~
Nextgrid
You can't test/prove _everything_ , however my understanding is that at least
a large part of these quack treatments (if not all of them) have already been
proven not being able to work (or being actively harmful) in existing medical
literature.

~~~
felixchan
Perhaps you should rethink the concept of "proven not being able to work".

------
Guy2020
Ultimately, individuals are responsible for their choices in "free societies."
I don't want to live in a world where all information is regulated by the
government.

This is a good story about poor choices made by an individual, but I hope it
is not fodder for any attempt at regulating what free people choose to do with
their lives. I think we need to do a better job at educating people on the
dangers of freedom...what do you guys think? Perhaps we need some sort of
"media literacy" education at the primary school level that trains people in
evaluating sources of information ( which seems to be reserved for the
university level in many cases, unfortunately ).

My thoughts are with the family of this man.

Edit: Wow, I'm surprised at the negative response to my comment. What is so
controversial about my views here?

~~~
Nextgrid
I don't think there is any argument at regulating what free people do. The
argument here at best is for good, _proven_ information to be available as
well as eradicating quack therapies based on false claims that don't work
because they unfortunately put people (like this man) at risk.

This is not an argument for regulating _information_ , you are still free to
peddle quack as long as you don't make false or unproven claims, and if you
are sure your "quack" is actually legitimate you are free to do research,
studies and tests just like the supposedly-evil "big pharma".

~~~
Guy2020
> The argument here at best is for good, proven information to be available

I believe going to a doctor is the way of accessing "proven information."

> eradicating quack therapies based on false claims that don't work because
> they unfortunately put people (like this man) at risk.

What would the mechanism for "eradicating" these "quack therapies" look like?

> the supposedly-evil "big pharma"

Well, can we really say big pharma isn't evil to some degree -
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2622774/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2622774/)?

~~~
Nextgrid
> I believe going to a doctor is the way of accessing "proven information."

Either that or government-approved websites (like the NHS is providing in the
UK). It is in the government's best interest to keep you alive for as long as
possible (if nothing else, just so you can pay tax longer), and while they
aren't always perfect (like the current covid-19 response from some countries)
I would still trust them more than some random people playing doctors on
social media.

> What would the mechanism for "eradicating" these "quack therapies" look
> like?

Outlawing unproven medical claims, and actually enforce the law?

> Well, can we really say big pharma isn't evil to some degree

Perfection will never be achieved, but if we take all the effects of "big
pharma" (both good and bad, across all diseases) and compare it to the effects
of backyard quack medicine, who wins? I'm willing to bet good money that big
pharma wins by a large margin, so I'd be willing to trust them until there is
enough evidence that says otherwise.

~~~
Guy2020
> Outlawing unproven medical claims, and actually enforce the law?

Would faith based approaches fall under your definition of "unproven medical
claims?"

I get what you are saying, but if someone wants to take their chances on some
"quackery," shouldn't it be their right to do so? Obviously this individual
knew that he was engaging in alternative medicine that is not recognized by
the mainstream.

I don't believe in this particular alternative medicine, but I don't believe
established science understands everything in this world and believe
individuals should retain the right to explore alternative perspectives.

~~~
Nextgrid
> Would faith based approaches fall under your definition of "unproven medical
> claims?"

Yes, I don't see why it shouldn't.

> I get what you are saying, but if someone wants to take their chances on
> some "quackery," shouldn't it be their right to do so?

The problem is that quackery being around puts people at risk like this man.
This man didn't outright decide to do quack, he decided based on unproven
claims made by the quack peddlers that this alternative treatment would
somehow work and be better than the conventional, modern medicine.

Furthermore during his alternative "therapy" he not only did it for himself
but attracted a large following online, claiming that this treatment was
working and thus encouraging other people to go down the same path.

> I don't believe established science understands everything in this world and
> believe individuals should retain the right to explore alternative
> perspectives.

Established science has never claimed to understand everything. Established
science adjusts its understanding of the world based on evidence and is
constantly doing new research to further that understanding. I find it very
unlikely that someone playing doctor on social media would do better than a
multibillion-dollar industry.

