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Comment by bko | Hacker News Reader

> We're having serious conversations right now about whether this ought to be a special initiative at NIH to put more research into health communications and how best to frame those [messages] so that they reach people who may otherwise be influenced by information that's simply not based on evidence. Because I don't think you could look at the current circumstance now and say it's gone very well.

If people are presented with accurate medical information and they choose to ignore it, at some point you have to accept their autonomy. At some point "framing" becomes propaganda and if ends justify the means, the authorities would be willing to lie in order to get their message across, making the problem of trust even worse.

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Exactly. I am pro vaccine and am vaccinated, but I still don't trust a lot of the messaging that comes through the media pipeline. I feel as though I have no idea what's going on with myocarditis and with the 'athletes are collapsing' stuff. The "Joe Rogan takes horse dewormer" was ridiculous and really made me distrust the institutions. The Dazsak Lancet letter saying the virus was zoonotic with no conflicts of interest declared. As a parent it feels impossible to really understand the risk profile of vaccinating your child. The _real_ data is so hard to find. When the medical community says "these side effects are rare", that is a meaningless subjective statement. How rare!?

I think the 'medical community' is not getting uptake on their scientific credentials because they've destroyed their own credibility. The absolute refusal to acknowledge responsibility for the destruction of their own credibility is abhorrent. It's very similar to how Democratic political strategists are resorting to blaming the voters for Dem's losing.

There's a couple vaccine scientists in my own city who have become active on Twitter during the pandemic, and every once in a while they say something inaccurate or in my opinion unethical. I dont comment, as they have an army of people who praise everything they say. I just silently file it into 'more BS said by person X', which then influences my opinion of everything they say, forever.

When you are in a position of power, you have to hold yourself to a higher standard of communication. One drop of deception in a sea of science will ruin the whole batch.

It is baffling that these people pretend to not know why people don't trust them. It shows a complete lack of empathy, understanding and a refusal to take ownership over something that is their responsibility.

> Exactly. I am pro vaccine and am vaccinated, but I still don't trust a lot of the messaging that comes through the media pipeline.

What purpose is there to get information from the “media pipeline”?

CDC.gov , NHS.uk , WHO , Harvard medical, Johns Hopkins, etc.

I’ve seen PDF files hosted on these websites that include an abstract and discussion entirely divergent from the numbers in the results table. They often publish “studies” without any peer review, and then broadcast their “conclusions” through loyal political messengers who never question them.

literally no one is telling you to get medical advice from the media or Twitter.

ask your Dr for medical advice.

I think you missed the point: the OP problem is that trusted source of information, even highly credentialled and respected, have shown some disturbing sign that they may not be fully honest or reliable.

That's the great tragedy of this pandemic: it has destroyed trust in institutions, by showcasing a few disturbing things.

It's really not that easy to get a doctor any random place in America. I live in a city in a larger metropolitan area; it is in the county which has the worst medical care in the state: we pay more (federal study), we are underserved (state study) and the medical conglomerates which control care delivery extract more profit... in absolute dollars... from this county than the richer, younger, whiter, more populous adjacent county (union study).

The epidemic of nonreproducible scientific studies is... an epidemic and it's astounding nobody pays attention.

Ten years ago I was misdiagnosed with a condition, at least in part because the closet Stalist "doctors" thought my body should fight off the infection... didn't wanna cause any antibiotic resistance, ya know.

When my wife suffered a detached retina, they opened the surgical wing of a regional hospital on a Saturday to fix it. (They did a great job.)

For years I got the PSA as part of my yearly physical. This test has a lot of false positives. Eventually it was positive two years in a row so I was "ok doc, guess you gotta start feeling my prostate". He looked definitely uncomfortable and found an excuse not to do it until the next year. He told me to go research it on the internet. I don't get the PSA any more, it's not the answer to any question: "do you want to know more?"

Let me pause to point out that we're really good at heroic measures which cost a lot of money and not so good at, you know, health. We see this in Covid, where if people are hospitalized we're willing to take all kinds of heroic measures, even if it kills them... but I don't see a lot of interest by the medical establishment in prophylactics or early mitigations (I know it's out there).

Moving on, the "doctor" doesn't want to give me a professional opinion, notwithstanding that he doesn't understand Bayes. "Do you want to know more?": That might be an ok manipulation on a web site, but it has no place in medical care.

We're supposed to be enabled to purchase medical care, but we're not supposed to do it based on price or quality. So I suppose the first thing we're supposed to buy is more information so we can make the right decision because it's "your own fault" if you're ignorant: "do you want to know more?"

Well, I worked at biotechs I at least have NBC safety training.

Crunching data from different sources concerning all things COVID doesn't reach the same conclusions. Stuff is reported and defined differently. Obvious questions from an epidemiologic standpoint aren't answered. Stuff seems to be omitted for curious reasons. Contact tracers can't contact 1/3rd of positives for followup? We don't know the race of 45% of the patients in hospitals? What kind of living and working conditions does it spread in?

As for the vaccine, it is leaky and most definitely not sterilizing. Funny that doctors understand how slathering yourself in antibiotics (mayonnaise optional) leads to resistant bac and it's most def not ok to give them to livestock, but "antibiotics ok"... until the science... the actual science, catches up: https://www.pbs.org/newshour/science/tthis-chicken-vaccine-m...

It's as obvious that the powers that be have no interest in actual public health as it is that they lack the intellect and public trust to do so.

As a student of human nature it is also obvious that belief and science are orthogonal, as quite evidently people can have faith in science without ever exercising the testing and critical evaluation required. It's impossible to understand medical care without understanding the conditions under which it is delivered.

I dont really understand your point. Yes agreed for complicated, rare problems you should do your own research if you can. You're clearly smart enough for primary sources so the media pipeline doesnt matter for you anyways.

I would argue most Dr in America will give good advice for covid. Certainly better than most media sources!

Having media in between is what I'm arguing against. Media is biased and not objective and should play no role in health.

> Yes agreed for complicated, rare problems you should do your own research if you can.

When it doesn't work out the way they planned when they pull it out their a* they call that a "complication". Seriously.

I think there's operant conditioning at work: It seems like there's less interest in extracting money from us by (cough) "practicing" medicine than in edubicating us that something is "serious" and it's our obligation to learn more about it, and extracting money from us that way.

I think there's a model for this operational paradigm, I think it's the smart phone. They train you to dismiss "alerts". Then they show you inchoate alerts, engendering anxiety and a feeling of lack of control. Then they propose a way you can get "in control" by following their narrative.

Are you really an expert because you're over 50 and you still have college loans to pay off? Really? You're gonna say that with a straight face, doc?

Funny you should mention Covid. Last year I asked for an antibody test, they said they'd do it. They didn't. They lied and said I'd never asked. Then they piled it higher and deeper by telling me that if they had, they'd have had to report the result to the CDC. WTF? Is that a bad thing? My wife was there for both exchanges. Furthermore, because electronic records there is no record of the tests which were ordered, only of the ones they want to tell you about: that is correct, I have no receipt for the blood which was taken or the tests which were ordered. (Lesson learned.)

I suppose it's easy to attribute this to some grand plan, but I'll choose mundane misfeasance as the reaction to errors arising from incompetence.

If there's any question about the efficacy of the treatment or any way for these amateurs to screw it up, why the hell would I trust my life to them?

> Moving on, the "doctor" doesn't want to give me a professional opinion, notwithstanding that he doesn't understand Bayes. "Do you want to know more?": That might be an ok manipulation on a web site, but it has no place in medical care.

This is genuinely baffling. Of course "do you want to know more?" is a valid question in healthcare.

Here's one example: https://www.bbc.co.uk/programmes/b038hhs7

> One drop of deception in a sea of science will ruin the whole batch.

The strange thing is that people will say things like this and then .. jump in the sea of deception that is youtube.

> > One drop of deception in a sea of science will ruin the whole batch.

> The strange thing is that people will say things like this and then .. jump in the sea of deception that is youtube.

It may be unfair to say that given OP self confessed biases (ex: "pro vaccine")

When people in your own camp show unethical behavior, you start questioning the narrative. The other camp may be worse, but the responsability here fully lies on those who think a drop of deception was acceptable because the ends justifies the means. No, it doesn't and didn't, not now, nor ever.

I love science and I'm extremely sad a few bad apples may result in a future where more and more people distrust science - with good reasons!

After the Tuskegee experiments became mainstream, ethics was put forward to avoid this.

Unfortunately, we didn't learn anything from that: diseases resurfaced in Afghanistan because people learned to distrust the "vaccination campaign" that was just a sham to sequence DNA and try to find terrorists.

This should never have been allowed to happen if we were serious about ethics and not lying.

Look at the old Star Trek, and how the federation always took the moral high ground, regardless of the unfortunate consequences: this is what we should aspire to, instead of lying and cheating to get people to do what we think they should do.

Grouping every mistake, oversight, over/underestimation with intentional falsehoods can be a slippery slope that leads to conspiracy chasing and paranoia. Discrediting people and organizations by association just leads to tribalism. It seems to be unfortunate inevitability in the modern world.

I have a few thoughts on this.

First, I agree that science changes and not all falsehoods are intentional. That said, an important part of maintaining credibility is owning ones mistakes. This means admitting when one is wrong, and what caused the change. Part of this is also admitting uncertainty where it exists.

Second, intentional falsehoods are a real problem and should not be allowed whatsoever. It is not ethical to lie to people even to get a beneficial outcome.

Last, while people and organizations should not be discredited by association, the absolutely need to be responsible for their own statements. If say, a CDC approved statement contains misinformation, the organization should be accountable.

I think this makes sense if you understand that people don't view youtube as an entity, but a portal to multiple sources.

They do understand that youtube contains misinformation, but are looking for a trustworthy source within the sea of misinformation.

I love your comment. I think the same.

> When you are in a position of power, you have to hold yourself to a higher standard of communication. One drop of deception in a sea of science will ruin the whole batch

If I may borrow from the old Spiderman movie and adapt the key line, "With great privilege comes great responsability"

What an excellently written and cogent take. Since so much of the covid messaging comes from the government and is filtered, approved, and "fact-checked", an odd echo chamber of information gathers strength. Almost 2 years into this and the only US official allowed to discuss the risks and threats of this virus is one person - Tony Fauci. The man is frankly in love with himself and his own celebrity. Why is this the only person we can get to speak to us about what's going on? I'm grateful we live in a diverse republic where the opposing party is openly critical of this man, his advice, and his record.

At this point, like it's been with chicken pox and other viruses, it seems less risky to just let our kids contract the Omicron variant than to expose them to a vaccine with the "rare" effect of myocarditis. I've never trusted the pharmaceutical companies in this country, so why should I now? Because "fact-checkers" on Twitter, Facebook and NPR, who receive government funding, tell me to? And yet if I try to express this sentiment in my circles, I risk being called a conspiracy theorist or worse, "anti-vaxxer", even though my wife and I are vaccinated. What's up with that?

>And yet if I try to express this sentiment in my circles, I risk being called a conspiracy theorist or worse, "anti-vaxxer", even though my wife and I are vaccinated. What's up with that?

Fear and anger leads people to do irrational things. This is on par with 9/11 levels of fear and look at what irrational things we did because of that.

Here's a video of Michael Moore getting booed at the Oscars by the audience for saying we went to war (Iraq) for fictitious reasons.

https://www.youtube.com/watch?v=M7Is43K6lrg

> The "Joe Rogan takes horse dewormer" was ridiculous and really made me distrust the institutions.

What institutions? CNN or the CDC? I don't remember the CDC ever coming out and saying something about Joe Rogan, but the CDC and FDA came out and rightfully said taking Ivermectin is a bad idea.

If some private citizen wants to find some quack doctor that prescribes them drano, what can they do?

What this is really about, is two competing medical communities... Joe Rogan's quack doctor and CNN's Sanjay Gupta, but don't make this about some higher level issue about "Institutions" the CDC and FDA are doing its job just fine.

The issue wasn't Rogan taking dewormer. The issue was that he was telling tens of millions of people that he "researched" COVID and decided that taking a toxic animal dewormer was a safer option than taking a vaccine and suggested that millions of people do the same.

It's understandable that people have issues with Moderna and Pfizer, since they are a new type of vaccine (mRNA-based) and we're not sure what the long-term affects of mRNA vaccines may be, but the J&J vaccine is made the same way that most other vaccines are made and those risks have been known for decades.

He said he listened to his doctor who prescribed it if you watch the exchange with Sanjay Gupta.

"His Doctor" is the person who should really be interviewed and scrutinized.

>It's understandable that people have issues with Moderna and Pfizer, since they are a new type of vaccine (mRNA-based) and we're not sure what the long-term affects of mRNA vaccines may be

It's not understandable why they use that as an argument for not taking them.

There might be long term effects to taking the vaccine that will only make themselves known in 20 years. There might also be long term effects to taking the coronavirus raw that will only make themselves known in 20 years.

This is the only valid argument against the vaccines that I have seen so far, and it is just as valid for the opposite side.

Viral vector vaccines have not been widely used either.

Several Chinese and Indian vaccines are traditional vaccines that have been widely used.

Tens of thousands of people received a viral vector Ebola vaccine.

>decided that taking a toxic animal dewormer

Please don't repeat known lies. it just muddies the conversation and adds to misinformation, which is already a huge problem.

Ivermectin is a drug designed for humans and prescribed to a hundred million people a year.

Follow your own advice, it was designed for treating parasites, not viruses.

Everything I said was factually correct. I never said anything about testing or approval for viruses.

Compare that with "toxic animal dewormer". If we want to have any productive public discourse about any topic, we need to resist the urge to knowingly repeat lies and misinformation.

No, most of what you said is wrong. The history of ivermectin:

Merck began marketing ivermectin as a veterinary antiparasitic in 1981.[7] By 1986, ivermectin was registered for use in 46 countries and was administered massively to cattle, sheep and other animals.[82] By the late 1980s, ivermectin was the bestselling veterinary medicine in the world.[7] Following its blockbuster success as a veterinary antiparasitic, another Merck scientist, Mohamed Aziz, collaborated with the World Health Organization to test the safety and efficacy of ivermectin against onchocerciasis in humans.

Ivermectin is an animal drug that was then used in humans for severe cases of parasitic infestation (i.e., lice, scabies, etc.). It is absolutely not a drug intended for normal human use.

> It is baffling that these people pretend to not know why people don't trust them.

This has been the real sticking point for me throughout this whole thing. As much as I don’t like Joe Rogan, I went and watched some of his conversation with Sanjay Gupta, and I applaud Sanjay for even agreeing to go on Joe’s show at a time when he was (imo) only getting worse. But he really, really, did not do a great job. Specifically, he literally hesitated to answer the question “Do you think it’s a problem that your news network lies?”. Surely Sanjay Gupta knows that CNN had exclusively been running headlines saying Joe Rogan was taking “horse dewormer” even though he was taking the actual human version of ivermectin.

I don’t think it’s the responsibility of public health officials to bend over backwards trying to repeatedly convince people who will not be convinced by any evidence. But I also think they’re between a rock and a hard place, since if they just stop trying, then there’s the question of “well we could have done more and saved more people”. I don’t have any solution, but I don’t think the move is for them to keep doubling down on repeating “the vaccines are safe and effective”. Because although it may be true, it clearly isn’t working.

Couldn't agree more. Furthermore, as an outside observer looking in to the US medical system, it seems to be set up in a specifically callous way that ruins lives and ensures all but the wealthiest face the prospect of financial ruin if their health takes a turn for the worst.

Given such a system, when they suddenly turn around and offer you a vaccine "for your own benefit, promise!", it is hardly surprising that it becomes a breeding ground for conspiracy theories (amplified by the usual social media issues).

> When the medical community says "these side effects are rare", that is a meaningless subjective statement. How rare!?

"Just trust us, we know what's better for you. We went to school longer" [0]

This pandemic has highlighted how little the medical system and community value honest, hard working people that are simply afraid for their health.

[0] https://youtu.be/Y0sg9G5BBVU

Isn't the reverse true? Misinformation is being framed as more trustworthy then accurate information. Are people willingly ignoring the correct information, or do they have the illusion of making their own decision, but its really been manipulated by other propaganda, lack of critical thinking skills, and like this interview suggests, tribalism.

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