Hacker News Reader

I agree that we should generally support the terminally ill in their efforts to seek alternative therapies. However, the point of the article is to highlight the rampant misinformation available online. Conspiracy theories about the medical industry neither provide useful solutions nor palliative care to the terminally ill. These theories are often propagated by perfectly healthy people preying on the vulnerabilities of the sick and their despondent relatives.

> 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.

Actually mostly I'm railing against the crazy conspiracy theorists who prey upon sick people and sell them snake oil.

The sick people themselves have been misled by charlatans.

He was given a 50% chance if he went the conventional route, but due to the actions of utter arseholes who peddle conspiracy theories, he turned down the conventional treatment and died.

It's not him that is the target of anger. It's those that preyed on him.

The attitude I'm seeing in this thread is less victim blaming and more attacking the scammers and frauds that kill people with their unethical behavior through selling quack cures to vulnerable patients. This article mentions the doctors thought with chemo, there would be a 50% chance of survival. Especially considering how advanced have made the prognosis for hodgkin's better, theres a good chance that he was denied effective treatment and his life by conspiracy theorists and quack doctors when they sucked him in with their conspiracies and lies. If it's a cancer with a 99.99% death rate and herbal teas makes them feel better in their last months, or they willingly turn down chemo with the understanding that they know it means they'll pass on, except with less pain, that's different. He had a chance and his ability to make an informed decision was robbed from him by misinformation.

I'm going to assume that you've never been in a situation where someone was offering you a course of treatment that had a chance of being 50% successful. Those are absolutely terrible odds. To act like it's the obvious choice is incredibly insulting to anyone who seeks alternatives. 50% is not "advanced". It's medieval.

Yes, there are quacks, but there is also cutting edge science that is not widely understood. You are blaming the people the victim chose to listen to, and therefore, you are blaming the victims choices, claiming that they were a "conspiracy theorist". You are blaming the victim.

The case that comes to mind for me was a very close friend who faced a disease with one in five odds of long-term survival, three decades ago.

They were among the other four.

I've monitored progress on medical knowledge and treatment of the condition over the ensuing decades. What I've learned is that:

- It's now possible to directly detect the genetic marker of the condition. We have improved detection and precision of Dx.

- The actual therapy ... is effectively unchanged. The chemo and radiation therapies they'd received were essentially unchanged over the preceding two decades, and were based on chemicals and mechanisms already in use in the 1950s (though dosing, quality, and side-effects mitigation are somewhat improved).

- The compounds themselves date to World War One, poison gas, and human experiments now considered crimes against humanity. History is interesting....

- These treatments remain largely unchanged in the decades since my friend's death. And five-year mortality for the condition remains about 80%.

That's the science: fifty to seventy years of effectively no progress. Not for want of trying.

From a point of view of assuaging Past Me that we'd pursued and received not only the best of all possible treatment, but hadn't missed out on any late-breaking developments, this information is comforting. Operating in the ultimate domain of uncertainty, of what the future might bring, we'd made the best decisions.

And yet at the time, in an era pre-dating the Web (though I did at the time have access to the pre-Web Internet), "helpful" people offerred various "nontraditional" therapies, the most frequent revolving around "laetrile" (https://en.wikipedia.org/wiki/Amygdalin#Laetrile), acyanide-based compound repeatedly demonstrated to have no therapeutic effectiveness, and multiple risks, since the 1960s. Despite this, treatment "clinics" had sprung up, notably in the Caribbean and in Mexico, offering the "treatment", at a steep fee. (Actor Steve McQueen is among those who'd fallen prey to the scam.)

I ran interference for those closer to my friend by intercepting, assessing, and discarding any such literature. In the heat of fear, uncertainty, confusion, doubt, and guilt that are the hallmarks of dealing with grave illness, adding more useless malicious and fraudulent bullshit to the informational mix would have been actively harmful, both medically for the patient and psychologically for them and all caregivers.

And I remain glad I did.

I'm sorry you lost your friend. It sounds like that was a long battle and it has weighed on you ever since. I am glad you were there to support them. I know from personal experience how obnoxious it can be to be bombarded with this-and-that alternative therapy.

But this lack of progress is what I find so frustrating, along with the hostility towards anyone who is trying to change that. Many sick people are willing to take a risk to progress the science. The insistence on 100% safety and unpractical clinical trials that only allow for patent-able medicines is ultimately killing more people by stalling progress. We haven't really cured a major disease in over half a century. That needs to change.

If a sick person claims that some sort of alternative therapy cured them, then there is absolutely _something_ there. It cannot always be explained away by the placebo effect, as the placebo effect is temporary. You're not going to cure a chronic disease with the placebo effect. These are important data points that need to be discussed. And a sick person should be able to discuss it regardless of their credentials. Their first-hand experience is valuable and contains objective truth.

But I agree that to claim that since an alternative therapy cured one it must cure all is irresponsible. Often times we do not even know what the root cause of an illness is, and until you do, just because two people have the same symptoms does not mean they have the same disease. There's also the issue of co-morbid diseases. There is rarely a one-size-fits-all approach (and it's seriously unfortunate that modern medicine insists that one treatment must work for everyone, otherwise it's quackery).

There are numerous attempts, and risks, being taken to advance the science. Sometimes the problems are simply hard, and solutions, if they exist at all, extraordinarily elusive. In recent years, genetic engineering advances such as CRISPR do put the possibility of a direct cure within realm of possibility, though of course that may also prove a false hope.

Other close friends have worked in the pharmaceutical and clinical trials sectors, I've a strong awareness of what goes on there.

There are numerous avenues which have been, and remain to be, explored. My friend themselves participated in several novel therapies once established protocols proved insufficient. We pursued all clinically plausible options, to the point of exhaustion (treatments themselves are often tremendously debilitating), even where not yet proven.

The hostility is not towards "anyone who is trying to change that". There is all the encouragement on Earth for such efforts. Watching masses of growths grow and consome someone you've held quite dear is not easily forgotten.

But those who exploit, possibly innocently but all too often with sheer uncaring deliberateness, the fear, ignorance, guilt, grief, and desperation of patients and thei loved ones beyond all hope is the one thing I've seen uglier than those growths.

The laetrile pamphlets I intercepted and burned 30 years ago went to great lengths to justify their clinics' and promoters' opposition to structured clinical studies, on the grounds that this would deny ssome patients (the control group) useful therapy. But this omits two key facts:

1. There've been numerous studies of the compounds and there is no clinical sign that of medical benefit. For nearly 60 years now.

2. Refusing to certify and demonstrate the compounds withholds the treatment, if beneficial, from vastly more beneficiaries. Of course, as the treatment is a fraud, this harm is fictional, but it. utterly undermines the fraudster's arguments. Their overwhelming insincerity aand self-serving aims are manifest.

There are several other common fallacies in your response I won't bother addressing, save to say in balance you're accomplishing far more harm than good here, and if you have the least bit of sense or decency you'll stop.

Sick people often seek alternative therapies because doctors do not have any treatments to offer

He had the option of chemotherapy with a 50 / 50 chance of long term survival.

The article is not about seeking alternative treatments as a last resort, it is about disregarding well proven science in favour of unproven (and in this case ineffective) alternatives.

If the goal is the avoid all suffering, like the suffering of chemo, there's much less painful ways to kill yourself than going through the agony of dying of cancer.

If the goal is to survive, then you do what works best. Chemo, radiation, and whatever else the doctor says will give you the best chance at survival. No one says it'll be fun, but you maybe get to live.

The problem is that we are all fallible. We are all gullible. And when we are at our most vulnerable, these snake oil salesmen are at our doors ready to sell us a fake solution to both the problem of suffering and death. And they're liars. The suffering won't be avoided, nor the death, but they'll have your money. It's murder and robbery at the same time.

Are you discussing the article or specifically folks reactions in this thread? Per the article, he had reasonably good odds of recovery had he taken a traditional route. I think it's absolutely fair to say that, if your end goal is living on (it's fair if it's not that), you should generally trust doctors and medical science in aggregate over the internet, though there are certainly times when modern medicine fails.

If it becomes ableist to critique those who follow fake medical advice from the internet, how would we reduce the this happening? If people are dying as a result, that's a public health issue and it deserves attention.

To the numerous posts in this thread.

"If it becomes ableist to critique those who follow fake medical advice from the internet..."

This is ableist because it claims that sick people are incapable of determining what is good advice and what is bad advice.

> This is ableist because it claims that sick people are incapable of determining what is good advice and what is bad advice.

But that's exactly what happened here, the sick person was taken in by charlatans. How is that ableist? Not-sick people are also taken in by charlatans all the time, we blame the charlatans, the scammers, the frauds and the snake-oil salesmen for preying on people.

Because the sick person clearly did not view these people as charlatans. It was their choice. Not yours.

You are taking one case where the patient chose to follow bad advice, and using it to suppress the voices of hundreds of thousands of sick people.

I'm doing no such thing. Get that chip off your shoulder.

I'm condeming those that peddle false information and profit from the sick as they do so. It's a shame you take that as an attack, but that's on you.

It's not your place to decide whether Sean was "taken in" by charlatans. It's Sean's. And there is not one quote in the entire article from him. And that he didn't want to see his girlfriend while dying does not give me confidence that she is someone who really speaks for him.

This article and Hacker News thread is largely comprised of healthy people trying to control what sick people think, feel, and say. And on top of that, you're trying to censor their discussions using government-backed violence. That is the conclusion of this article and many of the comments in this thread. I am sick and I fight against these authoritarian policies every day to get the information and medicine I need. I live in excruciating pain every minute of every day and then I have to argue with a bunch of clueless healthy people about what I can and cannot do with my own body.

You are at the very least advocating for others to attack me. Using government backed violence to prevent me from accessing the information or medicine I want _is_ an attack.

If the medical industry is so correct, then why aren't they curing people?

Why is the work of biochemists ignored in the health care industry? (in many ways they understand the human body better than doctors do)

Why do I have 1000's of people I've connected with online who have successfully treated/cured their illness? Do you think we're just making this all up for attention? Because the attention we get is far from positive. We are excluded by civil society. We only survive by hiding what we really think. The purpose of this hacker news account is to build up karma and then burn it in order to say these things. I can't just say them without paying a cost.

> It's not your place to decide whether Sean was "taken in" by charlatans.

Yes, it is. He was taken in by people peddling false information. We know it's false information.

Your weird equivocating about this and demand for it to be taken as some sort of personal offence is ridiculous.

> If the medical industry is so correct, then why aren't they curing people?

You might have fallen down the rabbit hole, please be careful down there, it can do more harm than good, as this article shows.

Sick or well does not matter. The general public is not capable of determining what is good advice and what is bad advice on complex topics. That is why experts exist.

(If you want to trade insults, your argument is anti-intellectual.)

"The general public is not capable of determining what is good advice"

I strongly disagree. Making choices for other people is tyranny.

Edit:

If you're referring to the term "ableist" as in insult--it is not. It is a technical term that accurately describes the logical conclusion of many of the arguments being made in this thread.

"The general public is not capable of determining what is good advice" because "experts" is not an argument. It's a belief. If you want to have an intellectual argument you've got to form an argument that I can respond to.

I have had my own frustrations with traditional medicine, so I understand where you're coming from. And I have effectively used "alternative" medicine, like skullcap for anxiety, which has actually shown to be effective in studies.

The problem is when people advocate treatments that are completely unproven, when a more effective treatment is available and hasn't been explored (I realize that he'd already tried chemo, but he was in remission from it previously, so it was definitely effective). That's what happened here - he had a 50% survival rate, which became 0% because of misinformation people shared with him online.

Sick people just trying to survive should listen to their doctors. It's stupid to normalize seeking out quacks because you don't believe the experts.

> 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.)

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.

I get wanting to be understanding of what these people are going through, but I’m not going to support the spreading of quack medicine. It’s unhealthy for society. Ethics don’t go out the window just because science can’t provide someone easy answers.