Having access to a lab and being an expert in the subset of virilogy used as part of the treatment definitely made it easier for this specific scientist to get her hands on this treatment. For someone else to get the same, they'd need to hire scientists dedicated to curing them, and that just doesn't scale to the amount of cancer patients in any normal hospital. Even then it didn't entirely cure her; the tumors were reduced in size but normal cancer treatment took care of the rest.
Give it a few years, maybe decades. A lot of research is being done in this area of medicine and I can't imagine such biotechnology not becoming more widespread in the future.
It does scale because it eliminates dozens of redundant oncologist visits.
We've had technology/ science for this for a while, but the medical capitalism establishment doesn't want it. Of course because it values labor too much.
They want drugs. Drugs are a monopoly, drugs are MASSIVE profit margins, drugs are simple. And drugs are the means that the FDA knows how to approve treatments.
This? It would take armies of skilled labor techs. It would also probably have to be offshore to avoid the US legal system.
But in my opinion this is the path to "the cure" for cancer.
But you are right about the commercial aspect. More money in treatments than in cures. If a cure ever comes, it is more likely to come from "the people" sharing notes over the internet than Pfizer or Novo Nordisk. But with the amount of money involved, it is an open question as to how long such an internet--where people are allowed to freely discuss things--will survive.
What I don't understand is why there isn't a semi-regular regulation-evading "course of action" for people that can afford it. Say, billionaires. They could build an island in the Pacific and get whatever personalized and experimental treatment will cure their specific disease, at the cost of their fortunes. The rest of us could cheer from afar, learn from the experiments, and have our tax money used for scaling out.
In a conversation like this, I’d want to tag people who’ve lost loved ones to highlight the importance of ‘skin in the game.’ This issue isn’t abstract for those who’ve experienced loss firsthand.
BHH Labs: pretty obvious to me it's ethically wrong to find the most desperate people around and pay them less than minimum wage to staff your event...
Uber: yes there was a need here, yes the experience offered by traditional taxis is awful and their service is strictly better where available, that really is not related to the ethical concerns I have with them. They're cheaper because they underpay drivers, and quite often they'll come into an area and drive out all the taxis then all but disappear themselves, leaving the town with zero practical transport options.
Always shocks me how relatively simple solutions can be with the proper background but none of those would reach mass market due regulatory issues.
Wonder what the policy would be if someone forced experimental medicine on someone without permission. How much do you think the patient should be allowed to sue for?
The real issue is the colleague helping, who is essentially acting as an unlicensed medical professional.
Sad state of science that real results cannot be published because it goes against the current dogma.
That is, in no way, why it had difficulty being published.
Wired magazine did a piece on him detailing how funding for this type of research was largely stonewalled because it ignored status quo ideas on cancer treatment.
My understanding is that traditionally ovt research was nearly impossible to get funding for but has begun to become easier as the status quo research and researchers from the 2000s have been replaced.
“A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents die, and a new generation grows up that is familiar with it.”
That's not the issue. The issue is that it's reporting results from self-experimentation, which simply from an objective results perspective has many conflicts of interest and accuracy.
I don't really get this one. If you drive for Uber, you're going to have a pretty good idea what you're getting paid, and if you don't like that amount then you're under no obligation to keep doing it.
People like to do the math on this using some kind of midsized SUV getting 20ish MPG and that will need major repairs before 150k miles, whereas the people doing it sensibly are using full electric cars or 50 MPG hybrids from reliable makes that will do 500k miles, for which the math is very different.
There are also people who do it part time and thereby have very different costs because they're e.g. accepting rides for trips that they themselves would have made alone regardless. These people are not being "underpaid", they're getting nearly free money.
And when everybody knows the deal ahead of time -- or can reasonably have figured it out within a week -- how can they be underpaying people (i.e. paying them less than competing employers) and yet people still choose to do it? Unless it's not as bad a deal as it's made out to be for those people.
> then all but disappear themselves, leaving the town with zero practical transport options.
Do they leave or are they forced out? Because it's an app; it doesn't make a lot of sense for them to leave for no reason.
"paying them less than competing employers" being synonymous with "underpaying" is probably not a great assumption, although I'm sure it's the definition an MBA would use.
Most regular people are choosing the least-worst option in terms of employer. That doesn't mean that the least worst option is necessarily good, or paying fairly on an absolute scale. It could just be the job that means workers can handle one unexpected large bill before going bankrupt instead of not being able to handle any at all working for the next-worst option.
In other words, there's an imbalance of power between employers and the "regular person" workforce. The workers technically have a choice of where to work, but in many cases, none of the choices are good.
Underpaying drivers is not part of the Uber discussion here whatsoever, they're specifically talking about raising prices for inclement weather to incentivize more drivers to accommodate more passengers. If they're paid $10 vs $11 an hour or $100 vs $110 an hour is irrelevant for discussing the ethics in this case.
Cabs were completely unusable in most cities before Uber unless you were staying at a hotel where they hung out. They also paid their drivers as poorly as Uber does and the benefit just went to the owner instead of Uber. It’s not like cabbies were specially trained.
Taxis were more expensive because they were so fucking shitty that the 5 fares a day a car would get had to cover the expenses.
>leaving the town with zero practical transport options.
Again, taxis were not practical before. It was more reliable to beg strangers at a bar for a ride home than to get a cab to show up in the 90s.
Regardless I will admit I misread the issue stated in the article a bit and addressed that more here: https://news.ycombinator.com/item?id=42097052
> the drivers make the rational decision you’ve outlined above
Okay... then the rates for drivers will automatically go up again since there's there'll be a mismatch between drivers & riders.
The predatory practice would be to raise prices at that point, not to abandon the market, but they can't even do that very much because then they'd be undercut by Lyft or the taxi companies actually would come back.
Doesn't that mean people are choosing the best employer that wants their skill set?
One is to ban it. This has some obvious drawbacks in weak economies, e.g. if the kid's choices are to work or to starve and then you ban them from working, they starve. It also interferes with kids being entrepreneurial. What's wrong with a kid mowing some lawns after school for spending money?
The other option is to create an economy strong enough that parents have no need to put their children to work instead of sending them to school, and then they don't.
What developed countries often do is to do the second one, then the first one, because that has some evolutionary fitness in politics. The more severe drawback of the first method is mitigated when the second one is in place, because then you're banning something people mostly wouldn't be doing anyway. Meanwhile politicians then get to claim credit for "solving the problem" by passing the ban, after it was already solved by something else.
These alternatives generalize to most types of labor restrictions (e.g. minimum wage). The reason only ~1% of people make minimum wage is that minimum wage is dumb so the rate is set low enough to minimize the damage done by the law, while still giving politicians something to claim credit for passing. What you actually want to do is the following: Use transfer payments (e.g. EITC/UBI) to help people making low wages, foster a stronger economy where people get paid more (e.g. make it easier to start a business), and lower the cost of living by preventing market consolidation and regulatory capture (e.g. enforce antitrust and don't allow restrictive zoning to constrain the housing supply).
Then you don't have to ban people from accepting less than a given amount of money because they would be under no pressure to do that to begin with.
I can't imagine a higher motivation to study and find a cure than to save yourself, with the possible exception of saving a loved one.
As other have mentioned, finding a cure for a specific case is easier and has less regulations than finding a general cure.
Maybe this is a bit of a stretch but it’s a bit like trying to find a way to end deaths from “accidents”. Drowning, falling off a ladder, and a car crash are all a type of accident but it’s really hard to find a thread tying them all together to deal with it generally.
This metabolic theory challenges the traditional somatic mutation theory, which views cancer as a result of DNA mutations accumulating in cells. Seyfried proposes that targeting the metabolism of cancer cells—primarily through dietary interventions like ketogenic diets or therapies that restrict glucose—could effectively "starve" cancer cells while leaving healthy cells less affected. His approach implies that a general strategy for treating cancer could involve targeting this metabolic vulnerability shared across many cancer types. Furthermore, this theory suggests that combination approaches targeting both glucose and glutamine metabolism might be particularly effective, as they would address both major fuel sources that cancer cells rely on. This could include strategies such as ketogenic diets (to restrict glucose), glutamine inhibitors, and other metabolic therapies that work together to compromise cancer cell energy production while preserving normal cell function.
0: https://nutritionandmetabolism.biomedcentral.com/articles/10...
Indeed, but humanity has managed to reduce "accidental deaths" as a whole by honing in on individual accident categories before - say, alcohol influence, combating that one by a multitude of means reduced car crashes, workplace injuries and domestic accidents.
Something similar might be possible for cancer as well. I think the solution already exists in nature, hidden within large animals, we "only" need to find out how precisely a 200 metric ton whale or a 10 ton elephant manages to beat statistic odds.
(Additionally, ever since COVID shone a spotlight on it, there is more and more evidence that lots of cancers are caused by viruses, most prominently herpes / genital cancer)
"Cancer isn’t one disease, it’s a catch-all term for a bunch of vaguely related ones"
Also that's a pretty common misconception, cancer is pretty well defined, abnormal cell growth. I agree that there will be no single cure, but it's like a viral infection, or a system intrusion. There may be many causes and cures will be different, but there's no disagreement over what is an isn't a cancer or a viral infection.
You see? Your point is unremarkable in the face of all diseases.
The handwavey reddit tier explanation you're shooting for is that cancer is genetically unique in each person. Which really is a gross oversimplification, there are non-unique genetic components of that are common themes across many cancers- TP53, PIK3CA, BRCA, KRAS, MSH, etc etc.
So such an explanation is lame because if there's all these common genes than it seems curable - which it would be if that were the long and short of it. Reason it's hard to cure is half those genes I name jack up replication machinery so it makes errors all the time. So now our cancer is not a genetically unique cancer, it's billions of genetically unique cells in one body, always mutating. Now it's not drug developer versus cancer, it's drug developer vs Charles Darwin, evolution. And of course there is a solution for that. Immunotherapy, or as the link shows, immunostimulation. Because the immune system also uses evolution / artificial selection!
It's one disease -- just a very complex one.
Of if it was a form of embezzlement or something, like there was funding for X and it got used for “treat my own cancer” that would be bad.
But TFA seems to say that the ethical problem is “did experiment risky to the patient on myself”, which just seems strictly more ethically clear than “do experiment risky to the patient on other people”, which is a norm, but a regrettable necessity.
Did I misread it?
I concede that I haven’t thought as deeply about this as ethicists, but I strongly suspect that the cost/benefit calculation here is way over-cautious if you think the theoretical induced harm is remotely close to the benefits of publishing.
The history of science is already full of self-experimenters, so at the margin publishing is unlikely to move the needle.
Furthermore, patients with cancer diagnoses are already extremely motivated to try whatever experimental treatments the FDA will permit; self-experimentation is already supply-constrained (of experiment opportunities) and there is excess demand. Again fuzzy concerns about population-level harms overrule individuals’ rights to seek treatments for their fatal diagnoses.
wikipedia.org/wiki/Oncolytic_virus
As someone with family members living with cancer, modern genetic sequencing has been the biggest surprise.
Not that we could sequence tumors, but that we could do so at scale and classify therapies by effectiveness against specific mutations (in general, even ignoring targeted therapies).
Widespread cancer sequencing seems like the missing link to promote better outcomes, particularly in metastatic cases.
See table 1 for a list (as of 2021, probably incomplete) https://pmc.ncbi.nlm.nih.gov/articles/PMC7913179/
* As the article points out, there is one approved OVT therapy.
The two chronically-ill friends I knew who put their chips on a drastic cure ended up dying pretty quickly from the cure. Neither even had a terminal illness, at least not one that would kill them any year soon: they just wanted to stop feeling miserable and to regain the ability to get stuff done.
Pretty sure that studying a career with such a specific objective in mind will have a much more useful effect in hyperspecialized branches (so not Primary Care) than studying generally out of school and only picking your branch a couple of months before it is required. You absorb the general knowledge with in the context of your specialization.
All that to say that doing 1 year of med-school may not be that useful unless you intend to do 10 more and become an actual doctor. Maybe nursing would be a better bet: shorter studies, and more practical.
He is still alive and without recurrence more than one year after the original diagnosis, even though his GBM was particularly aggressive.
https://www.theguardian.com/books/2024/nov/03/brainstorm-ric...
>> Analysis of the tumour after removal showed that it was thoroughly infiltrated with immune cells called lymphocytes, suggesting that the OVT had worked as expected and provoked Halassy’s immune system to attack both the viruses and the tumour cells. “An immune response was, for sure, elicited,” says Halassy. After the surgery, she received a year’s treatment with the anticancer drug trastuzumab.
Problem is it is basically impossible for research (without the money of big pharma) to ever try this - even though he works at a very big and respected University.
It is not even possible to try this with people who will literally die to cancer anyway and who would want to try the treatment.
In other words, should someone with the capacity to administer an experimental treatment be held to a different standard than those without such expertise?
Let’s say an individual opts for a less effective or accessible treatment due to personal limitations or lack of knowledge: does this alter the ethical weight of their decision?
This question becomes more complex when treatments have varying degrees of risk and benefit.
If a treatment is simply an off-label, it often goes totally unnoticed unless it carries an unacceptable risk.
Under that condition, what happens when the treatment holds significant promise, potentially offering a curative outcome? But it doesn’t yet have medical trials? Does the prospect of a cure override the ethical concerns about its risks? Where is that line?
When faced with a life-threatening disease like recurring cancer, what is the individual’s responsibility to society in considering the ethics of self-treatment? Should she have accepted less effective therapy that had already lead to a failure condition for the good of the rest of us even though we are barely effected?
How do the potential benefits to the individual—such as survival—contrast with the potential societal harm, if any, in terms of bypassing established protocols or ignoring sanctioned research?
At what point does the line blur between personal medical autonomy and the ethical implications of self-administered treatments?
I really do wonder about these questions. I mean, the only difference between the ‘ivermectin cures cancer’ et al crowd and this lady is her degree of knowledge, so how do we deal with this ethically?
God I hate these dark patterns - I would refuse to implement it. Just don't show the freaking X!
I don’t see the ethical dilemma proposed here. If patient or doctor exhausts through traditional medicine, and have the financial means and expertise to do “self experimentation”. There is nothing wrong with this. As long as the self experimentation is limited to the patient themselves (1), then there’s no ethical issue.
edit; although with recent change in political atmosphere in USA, there’s probably some group out there that thinks this is “playing god” or some bs.
I’d argue that it was more of a liability refusal from the journals, disguised as ethics. It should probably noted that it’s not an outright lie though. Again it’s hard to say considering we don’t have access to the refusals.
Arthur Ransome also used him to name one of the characters in his book Swallows and Amazons.
[1] https://en.wikipedia.org/wiki/Roger_Altounyan [2] https://en.wikipedia.org/wiki/Cromoglicic_acid
In all seriousness, I’m glad it worked out for her.
I have had a number of friends deal with breast cancer (in fact, one just told me she has been diagnosed with it, a couple of days ago).
It sucks, but, fortunately, is a lot less deadly than it used to be.
"discussion about the ethics of self-experimentation"
Is this another variation of the assisted dying argument ? I,e. "It's my body". Personally (and Iemohasise that word), I feel that if it's the best option, you should go for it.
Jake Seliger (RIP) wrote about his frustrations with it also:
https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce...
https://jakeseliger.com/2023/08/02/if-youre-involved-in-drug...
The first problem was finding the damn trial in the first place since nobody wants to share information as it might tell their competitors something.
And then he had to pass the prerequisites for the trial. The problem there was navigating the US health system that moves like a glacier and either couldn't get a test run fast enough or wouldn't take a test from somewhere else.
Finally, after all that, then you reached the "Right-to-try" level where there were different questions of whether to subject him to the treatment based upon whether the doctor thought it might or might not be effective.
And through it all, he and his wife understood that the odds were very, very bad.
To me, the counterargument to "Right-to-try" are the Alzheimer's drugs. The underlying Amyloid hypothesis appears to be broken and fraudulent and all the drugs based on it have failed miserably. And, yet, one got through FDA approval because the consumer push is so huge and everybody wants something--even if it doesn't work.
There is big money behind pushing the boundaries--be very careful about eroding them.
The problem with a nominal fee is fraudsters can be really clever at finding ways to bump up production costs.
You might give the company doing the research relaxed liability, but even then you'd want to be careful. After all, you wouldn't want a coal mining operation conducting "research on lung cancer treatment" by sending in miners without PPE.
If this is a legitimate research into curing cancer then eating the cost to treat test subjects is the least a company could do. The results are what's can be worth a lot of money.
1- Honest researchers who can't charge too much. 2- Unscrupulous quacks who will take all your money regardless of law.
With the second option being much more common due to incentives. If however you allow research facilities to take donations/payments to fund research related to a specific disease, then you will increase the incentive for legitimate companies, even if the odds are still low or close to 0.
Now what? The irrational FAR outnumber the irrational.
So, while they aren't always wrong, my default opinion is that, until given compelling evidence to the contrary, I shouldn't worry too much about what medical ethicists think on a particular topic. Even when they are right, they are usually right in a way that most normal people can easily see that it is correct.
[0] https://web.archive.org/web/20230302022931/https://blog.jaib...
It would be nice to at least have proper investigation of last alleged lab leak. When you talk about "fuzzy concerns" in light of last 4 years, I think you can not be serious.
There are cases where ultra high security virus lab sold disposed corpses on food market!!!
That was an objectively good things about Trump’s first term, pushing for and signing Right To Try.
I mean pulling the lever so only 1 person has to die instead of 5 seems simple until suddenly you're harvesting a healthy person's organs to save 5 others.
Heck we've seen it in action in covid-19 research. How much more useful data could we have had if we infected people deliberately? (or at least didn't just wait for them to get infected by chance) Sure some tens of people, maybe hundreds could have died as a result, but what is hundreds for a disease that kills millions? Besides, getting infected isn't even a death sentence, we've sent plenty of soldiers towards way worse odds.
https://en.wikipedia.org/wiki/Self-experimentation_in_medici...
Note there are different contexts at play here. When someone says "ethics" in a scientific context, it may encompass scientific integrity, avoidance of questionable research practices, reproducibility, etc., as well as medical and moral ethics. The speaker may not even be fully aware of these distinctions, since the subject is often taught with a rule-based perspective.
Experimentation on oneself is often _scientifically_ unethical (i.e., when done with the intent to make a scientific discovery) because:
1. The result is often too contaminated by experimental integrity issues to have scientific value. As another comment in this thread notes: "sample size of 1, confirmation bias, amped-up placebo effect, lack of oversight, conflict of interest when the patient is the investigator". Lack of oversight means no one is checking the validity of your work, it's not a permission thing. Every issue that is blamed for the so-called reproducibility crisis is worse.
2. Due to publication pressure, abandoning the cultural prohibition against self-experimentation amounts to pressuring everyone to self-experiment to grow their CV by a few quick N = 1 studies, or do something risky when their career flags. Obviously, oversight to ensure that self-experimentation proceeds only in cases of terminal disease mitigates this concern.
In practice, journal editors currently provide oversight addressing point #2, which is why work like what we're discussing here still gets published. See also Karen Wetterhahn's valuable documentation of her (accidental) dimethylmercury poisoning (https://en.wikipedia.org/wiki/Karen_Wetterhahn).
Experimentation on oneself in an attempt to cure your own illness by any means at your disposal, provided you do not harm others, is not _morally_ unethical IMO. It just rarely has a scientific role.
No you can't. Maybe in your country.
For ex, it's suicide is illegal where I live. Yeah.
Uh, women would like a word.
That said, there are stories like Helicobacter pylori that have moved humanity forward.
„The problem is not that Halassy used self-experimentation as such, but that publishing her results could encourage others to reject conventional treatment and try something similar, says Sherkow.”
How will it calling ethical or unethical makes any difference to you biologically?
But if you administer them to someone else it could be considered commerce which is under the purview of the government. Even growing corn on your own land to feed to your own pigs is considered commerce according to SCOTUS
I don't think cancer biologists would subscribe to this simple definition (and it's not hard to find cases of 'abnormal cell growth' that do not ultimately constitute cancer). There have been, and continue to be, publications that pose the question of what it means for a patient to have cancer (cf https://www.cell.com/fulltext/S0092-8674(11)00127-9 )
Cancers quite clearly cause different diseases - it's even the case that cancerous cells can yield distinct clinical presentations simply based on whether they are primarily found in the blood or in solid organs.
I don't think anyone would disagree that 'viral infection' is also an unhelpful description. Viruses may transiently infect host cells and die out (the common cold, for example) or permanently become part of the host genome (consider the various herpesviridae).
It's actually not,
here are the names of cancers that start with P
Paraganglioma Pineal astrocytoma Pineocytoma Pineoblastoma Pituitary adenoma Pilocytic astrocytoma Primary central nervous system lymphoma Primitive neuroectodermal tumor
Yeah, and veins and bodies, a lot of them.
But that's just 1 subject, anatomy. Pretty sure there's other useful subjects. And there's also the benefits not from the actual knowledge gained, but by the ability to learn higher order subjects, since they may have dependencies, you can probably orient learning towards the parts of the body affected.
The nurse idea is pretty good. Same with imaging technician. I'd venture a guess that there's a lot of year 1 and year 2 subjects that would be equivalent.
Jessica Tanenbaum, "Delayed Gratification: Why it Took Everybody So Long to Acknowledge that Bacteria Cause Ulcers" (2005)
<https://www.jyi.org/2005-february/2005/2/9/delayed-gratifica...>
No it isn't.
This is an expert explaining why journals have ethical concerns publishing the paper and why those concerns matter.
>> “I think it ultimately does fall within the line of being ethical, but it isn’t a slam-dunk case,” says Sherkow, adding that he would have liked to see a commentary fleshing out the ethics perspective, published alongside the case report.
1. "Targeted therapies" that directly target unique surface features that specific mutations create. E.g. BRAF
2. Sorting most effective treatment by cancer type, where cancers driven by different mutations in different types of cells respond to specific treatments better or worse. Especially important for metastatic where you may have a pancreatic cancer mutation tumor in your lungs, etc.
If the drug is available to the desperate, then the push by the public to shortcut the process goes away and the process can be done correctly. Those who are desperate can try, with the understanding that it might not work. The process can continue unmodified because there isn’t a pressure to get the drug out to the public because it is available.
If you allow that, you're back to HCQ for Covid territory. Or all the autism "treatments".
The problem is that most people think of medical outcomes as having 2 results when there are 4.
The 2 everybody thinks about are "drug given->patient gets better" and "drug not given->patient gets worse". But there are two more cases.
"drug not given->patient gets better" is wonderful in the super-rare cases when it happens and is totally unproblematic.
The problem is that the case "drug given->patient gets worse" is common--doubly so for experimental treatments--exponentially so for experimental cancer treatments. And the problem is that it can be due to either the disease or the drug or both. This case is the one that you can't explain in a soundbite. And it's one of the big hurdles in drug discovery.
The vast majority of people simply will never get this. We know this. We watched it play out in real time--multiple times.
Sure, if you made everybody pass a Bayesian statistics exam before they could get their treatment, that would work. But then you'd be "gatekeeping a cure".
Stupidity is the norm, not the exception, and greedy, evil bastards are not unrare. Your rules have to, sadly, take that into account.
It is not actually super rare. One might even say this is the most common case. I guess what you can say is that spontaneous remission is super rare to happen for “serious” diseases. But that is circular reasoning because we kinda define serious diseases by the fact that it is rare to just get better without treatment from them.
Why is this important? Because this is one of the main wrinkles with drug testing. If some people just get better on their own then you have to be very carefull with statistics and double blind protocols. Because if not you might confirm your belief in an innefective, or maybe even harmful treatment by random happenstance. Therefore i would say this case is also one of the big hurdles in drug discovery.
Otherwise i agree with the general gist of your comment.
One of the difficult things about ethics (including medical ethics) is that everyone has slightly different opinions.
But in MY opinion, if someone's medical situation has an extremely high likelihood of extremely poor outcomes (terminal cancer and severe Alzheimer's both qualify), then I think it is perfectly acceptable to allow them to use a treatment which is well understood to have no useful effect and many harmful side effects.
I have an ethical problem with encouraging them to do this; I have an ethical problem with profiting from them doing this; but I think that prohibiting them from doing it (as we do today, mostly) is also wrong. EVEN IF the patient is "too stupid to understand it correctly".
> Clinical use of this treatment was driven by women with breast cancer and advocacy groups, such as ACT UP; they believed that the FDA treatment approval process was too slow.
Do you doubt there are people who refuse to accept the consequences of their own actions and seek to place blame anywhere else they can?
Or indeed some third party might do the claim with hindsight. Prosecutors or whatever. People can be irrational, in general.
It would require legislative bodies to pass laws against the wishes of the people. Maybe in China :)
There's a lot that can be said on this, but it's harder to defend that position if the decision has an effect on others. The obvious situation that arose during the pandemic is someone experimenting and then creating more work for an already overwhelmed hospital system. Then you have to ask about paying to clean up the mess - should it be health insurance, that is paid by everyone else? If you die, what are the effects on your family? How do you draw the line where "well they don't have much time left anyway" vs "they killed themselves experimenting with flu treatment"?
A child gets a run of the mill cold, parents give them all the OTC things, kid gets better and assumes it must have been because of the drugs. In reality, they didn't need any of it.
For example, maybe cancer does have a single unifying cause that can be fixed very easily. But the millions of hours put into studying it suggests otherwise.
This seems to be generally true about most things. Only very rarely do we get something super simple like goiter being caused by the lack of iodine, or stomach ulcers being caused by H. pylori.
The other discoveries predate a lot of advanced medical technology, though. They were the low-hanging fruit in that sense. The only semi-recent discovery I can think of is that the Epstein-Barr virus causes cancer, though that does not necessarily qualify as "simple". EBV is also implicated in MS. EBV could ultimately be one of those "unifiers" that could explain multiple diseases.
https://sciencebasedmedicine.org/ketogenic-diets-for-cancer-...
> Seyfried, in my readings, appears all too often to speak of “cancer” as if it were a monolithic single disease. As I’ve pointed out many times before, it’s not. Indeed, only approximately 60-90% of cancers demonstrate the Warburg effect.
> Dr. Seyfried presents mouse studies that are interesting and suggestive that there might be something to this whole ketogenic diet thing, at least in brain tumors, such as this one. However, this is what we in the oncology biz would call pretty preliminary data, worthy of further investigation but not supporting the grandiose claims that Dr. Seyfried makes.
> Irritatingly, during the same talk, Dr. Seyfried refers to having done a “biopsy” on the GBM when the case report clearly says that the patient underwent a partial excision of the temporal pole with incomplete debulking of the tumor, which is a different thing. > ... > He also heaps scorn on the hospital for insisting that the patient undergo standard of care therapy, clearly demonstrating that he has no understanding of clinical trial ethics.
> This brings me back to the question of whether cancer is a metabolic disease or a genetic disease, the answer to which I promised early on. The likely answer? It’s both! Indeed, a “chicken or the egg” argument continues about whether it is the metabolic abnormalities that cause the mutations observed in cancer cells or whether it is the mutations that produce the metabolic abnormalities. Most likely, it’s a little of both, the exact proportion of which depending upon the tumor cell, that combine in an unholy synergistic circle to drive cancer cells to be more and more abnormal and aggressive. Moreover, cancer is about far more than just the genomics or the metabolism of cancer cells. It’s also the immune system and the tumor microenvironment (the cells and connective tissue in which tumors arise and grow). As I’ve said time and time and time again, cancer is complicated, real complicated. The relative contributions of genetic mutations, metabolic derangements, immune cell dysfunction, and influences of the microenvironment are likely to vary depending upon the type of tumor and, as a consequence, require different treatments. In the end, as with many hyped cancer cures, the ketogenic diet might be helpful for some tumors and almost certainly won’t be helpful for others. Dr. Seyfried might be on to something, but he’s gone a bit off the deep end in apparently thinking that he’s found out something about cancer that no one else takes seriously—or has even thought of before.
> but I would love to see, someone debunking it with data
The problem is Seyfried doesn't have data. His science is bad and extrapolating from marginal results. Some parts of these ideas might pan out, but all I've seen indicates he's made this his hobby horse is riding it.
There is a lot chew on in that comment and that article beyond "a bit of a quack"
If we found out cancer cells had souls tomorrow, exactly no one would be screaming “but their souls!” at folks walking into a cancer clinic.
Well, that's a you problem. The rest of us make decisions based on what we believe, not on what you believe.
I would hope most people have enough self awareness to not compare a foreign hostile disease that does nothing but kill its host to a human life.
Fraudsters simply love preying on the desprate.
My concern with lowering the bar for advertising such services is it makes it easier for someone to jump in with "Our clinic is actively researching cancer treatments and offers free experimental drugs".
I know that a drug company can't skirt regulations around clinical trials simply by making participation free (in fact, clinical trials usually pay the subjects.)
Here's the scenario I have in mind.
John has an uncommon cancer X with no cure. John contacts Cancer R&D Corp. John pays 80% of his life savings to R&D corp for research into his specific cancer X and provides himself as a test subject in the meantime. R&D corp attempts to find a cure for the disease, if the mission fails and John dies, in the future if other patients with cancer X appear, they can take over from where they left. Payment can be split into an upfront half for research and bonus paid upon a successful cure (or year of quality life milestones) to give incentives for actual success. So as to avoid companies from benefitting from never finding a cure.
That already happens very frequently. For example, bleach enemas to cure autism [1]. Colloidal metals to cure cancer [2]. And a whole host of other cure-alls.
Now imagine you have a mechanism where they can claim to be legitimate research AND there is an incentive to bilk people out of 80% of their life savings.
Heck, even imagine what happens if legitimate for profit companies can use this route for revenue generation. If they have a route to sell drugs which has less regulation and liability, why would they ever release a drug through the full FDA process? And why, you might ask, is regulation needed for this sort of stuff? Well, think Vioxx.[3] Sure, maybe this cancer drug works but it also might give you a heart attack. Without getting it fully approved or researched drug manufacturers have no reason to actually look into downstream effects. They have every incentive to just keep it on the market (like they did with Vioxx) and ignore evidence of adverse results.
Taking profit out of the equation makes it so that the research isn't and can't be endless. It makes sure there isn't a perverse incentive to make lethal drugs that work good enough for some diseases. I'd love it if we could have a win win, but the free market loves to reward bad actors.
[1] https://www.nbcnews.com/tech/internet/moms-go-undercover-fig...
[2] https://www.healthline.com/health/colloidal-silver-cancer
So?
Because there's ilegitimate companies you should outlaw legitimate companies?
Should we ban banks and stock brokers because ponzi schemes exist? What makes you think there would be less ilegitimate companies, it's possible even that there would be more ilegitimate companies.
"Heck, even imagine what happens if legitimate for profit companies can use this route for revenue generation. If they have a route to sell drugs which has less regulation and liability, why would they ever release a drug through the full FDA process? And why, you might ask, is regulation needed for this sort of stuff?Without getting it fully approved or researched drug manufacturers have no reason to actually look into downstream effects. They have every incentive to just keep it on the market (like they did with Vioxx) and ignore evidence of adverse results."
I'm not an expert on the subject, but I do know that the subject of the article and what you are talking about are 2 distinct domains. One thing is developing a drug or treatment for a common disease. And another is treating a specific patient. Right? Two very distinct services/products with very different regulations. I do know at least from the import regulations my country has laxer requirements for infrequent diseases. Of course a treatment for diabetes can support stricter regulations than for Cancer of the Biliary Duct.
Additionally what I suggested wasn't even treatment, I proposed just Research & Development, this is already possible through donations.
Fraudsters and scam artists are happy to rip off people trying to avoid death.
The laws that do target someone for being in an altered mental state are mostly about being that way in public.
There's probably also a crowd who want it to be illegal because they view suicide as a sin, though personally I think that justification for a law seems like a violation of religious freedoms.
If true, that sounds like survivorship bias (literally). Those who aren't happy about the failure will just try again and won't be counted in the statistics.
/s
Edit: so you commited a faux meta fallacy
https://en.wikipedia.org/wiki/Unit_731
The US government granted many of the "scientists" immunity in exchange for giving over all the data they had learned and helped even cover it up lol
The Japanese did some real fucked up shit in these experiments like chopping off limbs and reattaching them to the opposite side and slicing open pregnant women.
They also flew low flying planes over Chinese cities and dropped Plague-infected fleas which killed tens of thousands of people.
In total, they killed hundreds of thousands of people.
One thing that might be done (in my clueless opinion) is accept that sometimes shit happens and preventing the victim from getting exaggerated revenge or damages or whatever.
I'm sure at least once it happened that people who actively requested experimental treatments turned around and sued or called for prosecution after their experimental treatment took a bad turn. Of course researchers will be reluctant to provide experimental treatments.
/s
Plus it is massively more expensive to let people continuously loop back into kidney failure.
More expensive and unethical.
On a large enough scale, we decide the rules that apply amongst us. How could it be unethical? Who's being unfair to us, martians? God?
We're being unfair to each other... seems fair that we get unfair treatment.
No, you should have regulations and enforcement to ensure that stop illegitimate businesses from operating. Those regulations might make it harder for legitimate businesses to operate but that's to ensure public health isn't sabotaged by bad actors.
> Should we ban banks and stock brokers because ponzi schemes exist?
No, we banned ponzi schemes through regulations. That's what I'm proposing.
> What makes you think there would be less ilegitimate companies, it's possible even that there would be more ilegitimate companies.
There's always going to be people looking for loopholes in the law to make a buck. That's why the law needs to be constantly updated and these loopholes closed. You'll never 100% close everything, but that doesn't mean you shouldn't be constantly looking for improvements.
> I'm not an expert on the subject
You should read into it. The fact is that, particularly with medicine, we have to be careful about the leeway we give to companies. You simply have to assume that anyone selling something is amoral. Without regulation, companies can and do run the calculus of "How much will these deaths cost us vs the money gained from selling the product".
Vioxx isn't an isolated example either. Look up "Dalkon Shield", a product that had about a 1% chance of causing sepsis which killed and crippled literally hunderds of thousands of women. A product that, after this was found out, after the lawsuits flew and it was removed from the market, was shipped to and sold in Africa for several years.
My point is, that whenever anyone starts talking about relaxing regulations and making it easier for a drug company to profit, we should be thinking about the above abuses. Because companies can and will abuse the system.
You may still say "so what" but you should be thinking about "So what if the treatment cures cancer, if it causes a stroke, heart attack, or premature death when other maybe less effective treatments may have extended life". Cancer isn't the only thing that kills people and there are fates worse than death that drugs can cause.
> Two very distinct services/products with very different regulations.
The discussion here is how do we make individual treatments like the one in the article more available. The points I'm raising is that any increase in availability needs regulations to ensure it's not abused. I've given specific examples where regulation/enforcement has been lax which has allowed grifters and drug companies to directly and knowingly harm the public.
We just have a very different view. I think regulations HELP businesses.
For example, a well meaning company wants to make a cure for AIDS, a good regulation would require a study of length and size proportional to the volume and lethality of the disease. If the study is small, the regulation may allow small trials, and its first batch of patients be itself a trial for bigger batches.
If there were no such regulations, the well-meaning company may have had a lot of success, but maybe they would have gone to market too fast and detected a side effect in a big trial instead of a small trial.
Conversely, a terrible company might either choose to comply with the trials, and genuinely pivot to legitimately seeking a cure. Or avoid regulation altogether.
Good regulation is not an equal cost imposed to both parties, and never the cost is higher to the good parties. Regulation is an incentive that when followed leads inevitably to the results desired.
"That's why the law needs to be constantly updated and these loopholes closed. You'll never 100% close everything, but that doesn't mean you shouldn't be constantly looking for improvements."
Also not at all how I view the law. The law is written once, what is updated is the case law, the court rulings. Only when there is a change in technology other foundational changes, or very biig learning cycles (50 years), do we make another attempt at the same problem. You don't update a law every 3 years patching for loopholes playing a game of catch me if you can.
That's not to say all (or even many) cranks are secretly geniuses. But they're able to explore parts of the search space that the establishment can't for all sorts of reasons.
In other words, your establishment has all the resources and can incrementally make its way to local maxima better than any crank could. But any members that start making bold claims that might threaten that establishment will be punished, out of a simple survival instinct.
Here are five of the best historical examples of individuals who were considered cranks or fringe by their peers but ultimately brought about a paradigm shift in their respective fields. Each faced intense skepticism and mockery, yet their ideas transformed our understanding of the world:
### 1. *Ignaz Semmelweis (Medicine)* - *Contribution*: In the 1840s, Semmelweis discovered that hand-washing drastically reduced maternal deaths in maternity wards. - *Why He Was Considered a Crank*: His idea that "invisible particles" (what we now know as germs) could cause infection was ridiculed. At the time, the concept of doctors themselves transmitting disease was unthinkable, and many in the medical community were deeply offended. - *Impact*: Although he was dismissed and ultimately died in an asylum, his insights laid the groundwork for antiseptic practices. Today, Semmelweis is honored as a pioneer of infection control, and hand-washing is a cornerstone of medical hygiene.
### 2. *Alfred Wegener (Geology)* - *Contribution*: In 1912, Wegener proposed the theory of continental drift, suggesting that continents moved across the Earth’s surface. - *Why He Was Considered a Crank*: Geologists at the time thought his theory was absurd because Wegener couldn't explain how continents could move. He faced widespread ridicule, with critics dismissing his ideas as pseudoscientific. - *Impact*: Decades later, with the discovery of plate tectonics, his theory became foundational to modern geology. Wegener is now recognized as a visionary, and his ideas radically changed our understanding of Earth's structure and history.
### 3. *Louis Pasteur (Microbiology)* - *Contribution*: Pasteur’s germ theory of disease in the 1860s revolutionized medicine, suggesting that microorganisms were responsible for causing many diseases. - *Why He Was Considered a Crank*: The prevailing "miasma" theory held that diseases were caused by "bad air," not germs. Many in the scientific and medical communities mocked Pasteur’s ideas, calling them "preposterous" and even "dangerous." - *Impact*: Pasteur’s work ultimately led to sterilization techniques, vaccines, and pasteurization, transforming medicine and public health. Germ theory is now a foundational concept in microbiology, and Pasteur is one of the most celebrated figures in medical history.
### 4. *Nikola Tesla (Electrical Engineering and Physics)* - *Contribution*: Tesla developed and promoted the use of alternating current (AC) electricity, which ultimately became the standard for power transmission worldwide. - *Why He Was Considered a Crank*: Tesla’s ideas about AC were met with hostility from proponents of direct current (DC), most notably Thomas Edison. Tesla’s later ideas, including wireless energy transmission, were seen as wildly impractical and even "insane" by many of his contemporaries. - *Impact*: Despite the ridicule, Tesla’s AC power systems are now the global standard, and his ideas on wireless communication foreshadowed modern radio and telecommunications. Today, he’s recognized as a visionary inventor who changed the course of technology.
### 5. *Barbara McClintock (Genetics)* - *Contribution*: In the 1940s, McClintock discovered "jumping genes" (transposons), showing that genes could move within and between chromosomes. - *Why She Was Considered a Crank*: Her findings were so radical that her peers couldn’t accept them, with many scientists dismissing her ideas as highly unlikely or even bizarre. - *Impact*: Her work was eventually recognized as groundbreaking, earning her a Nobel Prize in 1983. McClintock’s discovery of transposable elements opened new avenues in genetics, shaping our understanding of genetic variation and evolution.
---
These five individuals were openly mocked, ignored, or dismissed by the scientific communities of their time. However, they each persevered and eventually brought about paradigm shifts that redefined their fields. Their stories highlight the importance of challenging conventional wisdom and illustrate how transformative ideas often come from those who are willing to go against the mainstream.
A good heuristic could be "seems like a solid scientist in general, but this niche where he was a top level researcher led him to a split with the main stream" vs "consistently takes anti-mainstream views and has no contributions within the paradigm "
I think what your initial comment was missing is it implied just being a quack was somehow a path to new ideas.
What his is missing, in the context of Seyfreid, is that what Seyfreid is promoting:
1. Has been studied quite extensively. 2. The results of said studies do not match his claims. 3. He can't even get the details right on the data he's trying to present.
The examples you gave are different in that while the action was not understood, they explained existing data.
In particular, I think the challenge with your initial comment is that spouting bullshit is an entirely free enterprise. Testing bullshit is an expensive enterprise. So your system provides no meaningful actionable way to get to a new, coherent, understanding of the world.
And, let's be honest, Tesla is a mixed bag. He was a total crank in a lot of ways. But also a genius in other ways. Linus Pauling is similar. Complete crank around vitamin C.