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.
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.
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.
I kind of share your perspective, but to be honest, my theory about the appeal of the communities you're referencing is that people are not in control over their care, so they do what they can to achieve it. They're stripped of it by medical regulation and lack of choice over who to go to. So they're forced to go to some alternative, totally outside the system, to get any kind of traction in personal autonomy.
The choice, at least in the US, is (1) traditional, science-based medicine delivered in an oppressively regulated system, full of monopolies, regulatory capture, patriarchical, patronizing attitudes, and restrictions on how you care for yourself, or (2) untested, unscientific, but free approaches to care where you are the active driver. This is a bit of an oversimplification, but not much.
It's absolutely no surprise to me that we have so many problems with lack of engagement in preventative self-care when the entire system revolves around deference to authority. Your question "should you trust an authority?" is a bit misguided, because in the end, if you say no, what choices do you have?
Expertise in the medical system is based on hoop-jumping and guilds as much as actual rigor of argument and expertise.
The research I'm familiar with (and teach) suggests you see associations prospectively in both directions, but no clear evidence of causality (although I've grown skeptical of causality as a concept).
This PNAS paper is nice to see, although as some are pointing out, there's a bit of p-hacking probably going on.
My sense is that certain research topics are kind of ground zero in this misled, outdated mind-body war. So you see people trying to demonstrate something along the lines of "see here, there's a biological basis to this, so patients aren't just inventing this," as if the psychosomatic conceptualization of the problem was ever just "inventing it," and as if people with psychogenic psychosomatic problems can't mimic the same things in their subjective reports (what happens when you do have this cytokine screen, and you still have people who look normal on that?)
As you're alluding to here, the problem is that even if you do find inflammation markers it's difficult to tell if this is due to stress in a broad sense, and how these markers relate to perceptions of stress across a broad range of individuals.
Just to take an example: how do these markers look in psychiatric patients who don't report CFS symptoms? I don't mean to suggest that these individuals have psychiatric problems, but it's unclear to me from this study what is going on with these inflammatory markers.
Let's say these cytokines do cause increased pain and fatigue experience. Do CFS patients have a stronger relationship between those inflammatory markers and experienced pain? If so, what does that mean?
The paper itself is more appropriate in tone than the NPR article, for what it's worth.
I am at the half of this long thread, comments are incredibly good and interesting --even for HN-- but yours seems to me outstanding. Thanks for taking the time to write it.
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.