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Comment by inopinatus | Hacker News Reader

You said everything of that sort.

If that was not your intent, then perhaps in future you might say what you mean, rather than defending the vendors of false hope and perpetuating the extremely harmful myth that one can treat oneself.

As in this:

> patients themselves are often better informed than general MDs

No, that is a gross overgeneralisation and not true of any condition. A few patients may have slightly better information in one dimension of their condition than a GP. Presuming otherwise is foolhardy arrogance that misses the profound interconnectedness and subtle complexity of body systems. And this is especially the case with endocrine and immune systems.

Patients should be as informed as possible, yes, because this is always a benefit to one's treatment. Crossing the line into "I-know-better"-land is arrogance and idiocy.

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Would you please stop being so personally rude and thorny? Discussions are always of higher quality when we aren't and quality is what we're here for.

Yes, sorry, that was hyperbolic of me.

The problem for me is that currently the choice is between accept definitions of "authority" as it is decided for you, or "you've crossed into arrogance and idiocy." And the consequences ultimately are most severe for the patient, who has more skin in the game, literally, than the provider.

I'm not talking about quack authority figures, though, either. Let's say, for example, that you, as a patient, have been reading the literature on inflammatory systems and have become convinced that some immunology PhD has a very convincing scientific case that's been made for some etiology and treatment. Why should you, as the patient, have to get the approval of a physician to go through with it? It might be a good idea to consult with people of different backgrounds, to get competing opinions, but what if the medical literature has already done that? What if you ultimately disagree? What if the experts disagree?

My experience is that GPs do not always know better, because there is just too much to keep track of. Patients are the ones whose condition is most salient to them, and they're the ones who are spending the most time on it.

Honestly, I think the best solution to alternative medicine is to just deregulate the whole thing, so people don't have the excuse of regulatory capture for a particular decision. When there's nothing "alternative" anymore, and everything is just alternatives, everything is medicine, just good or bad.

If it's a matter of degree, then here's my take on your remark.

Your comment has not merely crossed the line into "I-know-better"-land, it is days into that territory, is lost without a map, is desperately looking for water and shelter, but is still having terrible trouble admitting to itself that it might have made a horrible mistake.

> Let's say, for example, that you, as a patient, have been reading the literature on inflammatory systems and have become convinced that

Uh-oh.

> PhD has a very convincing scientific case

That is the point where your physician had to stifle a giggle, I'm afraid.

> Why should you, as the patient, have to get the approval of a physician to go through with it

You don't. If you can perform the procedure on yourself, it's perfectly legal.

Did they edit their comment to say "treatment" instead of "procedure"?

Because there's lots of things that fall under treatment that have pretty effective legal gatekeeping around them.

I don't believe so. Inopinatus has wildly misquoted me and others here.

When I quote someone, I put it in "quote marks", or > italic.

Uh-oh.

That is the point where your physician had to stifle a giggle, I'm afraid.

People who are sincerely and humbly committed to seeking truth on a topic, don't make sneering comments like this.

Deregulating the whole thing was actually tried, in that we used to have no regulations. It was a disaster. Many people suffered and died unnecessarily due to treatment by quacks with useless "medicines". Read up on the history of the AMA and FDA.

> No, that is a gross overgeneralisation and not true of any condition.

Bullshit. Anyone with a scientific background and a vested interest in studying a specific uncommon disease will likely know more about it than most GPs. General Practitioners are just that - generalists. They know the basics, plus enough to refer patients to an appropriate specialist. It's unreasonable to expect them to be well versed in every single obscure condition that a new patient could possibly have, and it's a naive appeal to authority to state that they automatically "know better" due to having a medical degree.

> Anyone with a scientific background and a vested interest in studying a specific uncommon disease

You totally missed my point there, which was rebutting that patients "often know better", which is just plain crap.

You are "rebutting" things that haven't been said by anyone. And then insisting you are right.

Here is what I actually said, which you intentionally misquoted and are now twisting into something else entirely:

For some conditions, the patients themselves are often better informed than general MDs. Only actual specialists in the condition really know more

And that is not so except for a very small minority of presentations. If you'd said "very occasionally" rather than "often" I might agree. Everyone else is simply pretending to a much higher level of expertise than they possess.

Presuming otherwise is foolhardy arrogance that misses the profound interconnectedness and subtle complexity of body systems. And this is especially the case with endocrine and immune systems.

In my experience, people with chronic illness who take their own treatment into their own hands have a far better a appreciation for the "interconnectedness and subtle complexity of body systems" than do mainstream physicians.

My own recovery from chronic fatigue has come about because I developed a deep understanding of this and undertook an assortment of practices that enabled these systems to correct themselves.

> A few patients may have slightly better information in one dimension of their condition than a GP. Presuming otherwise is foolhardy arrogance that misses the profound interconnectedness and subtle complexity of body systems.

This is precisely why a good doctor-patient is so valuable. Some (maybe not often, but at least some) patients _will_ know about the specifics of their condition better than a GP (e.g. if they have a scientific background and prepared to do sufficient reading), but the GP will be able to put that into a broader context of which someone focused on the specifics (and non-objective) will likely be unaware.

FWIW, my GP has said on at least one occasion "I'm considering drug X because of blood results Y etc. Go and do the reading on it and let me know next time if you want to try it; you'll have a deeper and more recent understanding of the potential benefits/side-effects than me" (IIRC it was the addition of levothyroxine to counter fluctuating fT4 levels, whilst accounting for any drug-drug interactions with current medications).

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