> post reads a bit like one of those stackoverflow questions seeking a solution to x when that’s not the problem they should be solving

Sort of. They're looking to be a good friend and assuage perceived helplessness in the face of a repeat foe. )=(From a clinical perspective, the most-useful observation in the thread may be the unusual frequency with which this person has seen GBM.)

More broadly, we tell the stories of Sancho following Don Quixote through windmills, or Sam following Frodo to Mordor, because loyalty over reality is itself a reality of humanity. Like Sancho or Sam, our role in that journey is less to weigh its merits and more to keep our hero from cliffs. That, however, means the person playing that role has to see clearly.

Because it’s actively harmful.

> And your contribution is to stop people from helping them

No. In the vast majority of cases, answering this question as intended isn't helping them, it's actively harming them.

> because of something about what now

You're responding to a post which explains this. If you understood the post, faking confusion is dishonest. If you didn't understand the post, you weren't qualified to disagree with it.

As a pure numbers game, I’d find it more surprising if “broscience” never found a result:

- a lot of terminal patients are prone to experimenting

- their overall number probably eclipses the total number of trial patients in a given year by at least one order of magnitude and I’d believe two or three

- they don’t have institutional barriers to what they can try, eg, they’ll fund non-patentable treatments

- a lot of their approaches are taking things from published papers and trying to recreate similar effects (eg, calorie control [1])

That they’ve stumbled across at least one treatment that solved at least one case for at least one patient seems likely. Isolating that from incorrect null results is where the epistemological struggle is. And there’s a good chance that it won’t help you with your particular case.

But what’s the harm in trying? — you’re probably going to die anyway.

[1] - https://pmc.ncbi.nlm.nih.gov/articles/PMC8749320/

Your tone policing in offensive. Psychological and quality of life in end of life situations are valid and necessary considerations to include when talking about life threatening conditions.

I said nothing about how a terminally ill person should process anything. I stated what I have found to provide the best outcome when a person close to you has a terminal disease. If OP said 'my friend asked me to research...' I would have given a different response/no response.

But when OP makes it look like this is an initiative OP took upon themselves, for themselves, because they have lost too many friends, then yeah, I'm going to highlight that might not be the best possible position to come from if OP wants the best outcome for their friend. My response about outcomes it totally valid since OP asked for help with outcomes.

OP has a reasonable concern, I just don't think it's the only consideration at play.

I admire your optimism in epidemiology. In point of fact, though, we have a rough natural experiment in the form of a food that doesn't cure a disease, but rather makes half of all drugs worse. That's very valuable knowledge, and under ideal epistemic conditions it might have been discovered within a few years of organized drug discovery as such. Yet was not widely known until the 1990s. So that's a failed positive control, which suggests that our practical capabilities to detect these kinds of effects are limited. Understandably so, given that there is no general requirement for dietary logging in clinical trials.

That said, "a food that cures cancer when eaten" is not the bar for experimentation. More realistic might be something like "a dietary or behavioral protocol that, in some way, ameliorates this or that illness".

For organisms with our body plan, "a cure for cancer" is like talking about "a cure for defection". But clearly there's "stuff that is efficacious against particular instances of cancer", a lot of which we found through techniques like natural product screens, i.e. "just trying stuff", rather than via rational drug design.

I think there is a lot of efficacy left on the table with modern studies, clinical trials, and drug development. Most of the work is looking for treatments that work for the majority of the population. If a treatment was effective than standard care for 10% of people, it would be discarded.

It is more economical to start over looking for something that works for 90% of people.

Drugs an treatments aren't evaluated and discarded when proven worthless. The bottleneck is the number of treatments in development, so they are discarded when something else has a better ROI.

All grapefruit… my wife has clear instructions on this for her heart meds

> The best care is not necessarily the best bleeding-edge treatment

It's mostly a conceptual thing for me. As a technical person with a hacker/nerd/scientist mindset, I will not be able to trust someone that blindly follows official protocols from some authority they don't personally understand the reasoning or evidence behind.

For example- I do have a doctor that is a hacker/nerd/scientist that also teaches college biochem courses for fun on the side and he was about to prescribe me a medication, but then based on an offhand comment I had made, realized I've had a number of bad reactions to medications that he knew off the top of his head were metabolized by the same liver enzyme as this new medication. This guy keeps a book about drug metabolism biochemistry on his desk, and the cover is nearly worn off from use.

I most likely have a SNP in that enzyme, that would have given me another bad reaction. This is deep nerdy biochem knowledge he was not going to get from any official protocol that led to better and safer care. The biggest problem here is we like geeking out on this stuff so much, he almost forgets to actually treat me when I visit him.

I've had other doctors that even if I had noticed the potential P450 enzyme issue myself, would refuse to listen because they have a fundamentally non-technical mindset, combined with ego issues about being the expert- that are usually made worse not better if I mention that I have professional expertise and training on the underlying biology.

In truth, I'll admit it is both quite rare to get any real benefit, and legally risky for the doctor to deviate from guidelines based on direct knowledge or understanding.

I agree that the probability of a desired outcome is valuable information. But to call being unaware of this information “false hope” is a blight on our language. Hope is hope. It’s quite proven that believing a certain outcome is likely increases the likelihood of that outcome.

Hope is premised on the basis that nobody knows the future 100%.

Experts can give a mostly-frequentist analysis based on past medical cases.

The unknown part is whether those cases apply to yours.

And nobody knows.

All the so-called probability is meaningless. It matters not whether your chances of remission is "99%" or "1%". Those numbers are meaningless in a specific case under a specific situation.

I understand this is not the commonly understood notion of probability, but the common notion is simply wrong.

I'm not saying experts are wrong, I'm happy to assume that their analyses are quite correct when applied to a population. I'm just saying the common way of interpreting their statistics onto one specific case (the one you care about) is wrong, because you can't just plug the probability onto a single person/case and round it off to zero or one.

I get what you’re saying, but I think there is too big a cultural difference for your advice to make sense for us.

Sorry for what you went through though, sounds like it was really painful.

"Since the contextuality of communication is always in the foreground when I talk or write, you know that someone is confusing me with an authority when they talk about my `protocol' for something. Context is everything, and it’s individual and empirical." —Ray Peat

I suspect you are removing so much nuance and context as to make a reasonable idea seem quite stupid. Do you have a reference to that specific claim?

His general approach is to figure out what biological systems are impaired in a particular health condition, and rationally think through the possible underlying bottlenecks and regulation - including things like the nutrient substrates for metabolism, and hormones that trade off metabolic energy between different systems.

At a philosophical level, he was generally opposed to any type of prescription or protocol that claims to "cure almost any[thing]" and emphasizes the need to understand the individual context and biology for a certain situation. He flat out refused to give any general health or diet protocols, and only said what he did for himself in very specific situations related to his own personal health problems- which ignorant people with no biological knowledge have inappropriately tried to translate into general prescriptions and diet protocols.

They're cargo culting his personal diet, etc. when really following his philosophy would involve deeply studying and understanding the biology with an open mind, and thinking of creative solutions on your own.

If one is treating him as an authority, and copying what he did or said personally, they are already entirely missing the point, and acting completely against his actual philosophy of problem solving. His goal was mostly to strip authoritarianism from medicine, and replace it with an orientation towards personal deep understanding and creative problem solving.

It is my belief that people are so conditioned to expect simple nonsense "universal protocols" from both mainstream and alternative medicine, they refuse to listen when his whole point is to get people out of that kind of thinking... and try to still extract them from whatever he says.

>> Remember than when the AIDS epidemic broke out. The doctors and labs didn’t help much. People took things in their own hands and tried stuff, and in the end, they found things that worked.

What??? It was the FDA that blocked access, not doctors and labs. It was the doctors and labs that were trying to find treatments. Peptide T and AZT had several studies going on.