Scientists Edge Closer To Lab Test For Chronic Fatigue Syndrome

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.

At some point you start edging out of the realm of medicine and into the realm of expectations.

So you're feeling bad, and you go to the doctor. The doctor listens to your symptoms, and does some tests -- blood tests, MRIs, listening to your chest, whatever -- for the most common causes. They come back negative. So he talks to some colleagues, reads his old reference books, Googles around a little, and comes up with a longer tail list of possibilities. Runs some more tests, they come back negative.

Now what?

Well, what do you want to happen? The doctor doesn't know what's wrong with you. Maybe someone else does; do you want the doctor to refer you to someone else who might be able to figure you out? Maybe no one does; there's a lot of things that go wrong with people and we haven't even identified them all yet, let alone figured out any sort of treatment.

A lot of people really, really just want a name for what's wrong with them. So you take a constellation of symptoms and slap a name on it, like CFS. But does that help? With no known underlying cause, CFS is as likely to be a variety of different problems, with similar, overlapping symptoms, as it is to be a single disease or condition. Some people "diagnosed" with CFS may actually have the same, currently-unidentified problem; some may have a different problem; some may have an atypical presentation of a disease or condition that we know about, and can treat.

That last one is especially troubling: by labeling a constellation of symptoms, you have created a monolithic condition, in peoples' minds. If you tell someone they have CFS, because they match the constellation of conditions, they will stop looking for any other answer. If what they actually have is an atypical presentation of a known condition, they might never be diagnosed with it, because they miss the significance of new symptoms as the condition progresses.

That's why a lot of good doctors treat unknown conditions in such a way so many patients find so unsatisfying. They rule out the likely problems, make sure you don't have anything unlikely that would kill you if left untreated, and then ... wait for more information. Wait for you to develop new symptoms, wait for new well-defined diseases to be discovered, and try to manage the symptoms as best they can be.

That's not being particularly generous. If there is no evidence of a physical problem, you get kind of stuck. Doctors have tried hard to find a physical cause for a number of these illness.

As an example, the CDC spent years investigating Delusional Parasitosis, despite evidence it was mental illness, precisely because the sufferers were so insistent they were truly sick (See bottom of https://en.wikipedia.org/wiki/Delusional_parasitosis). They didn't find anything, and the treatment remains antipsychotics, which do appear to work.

"Yes, ideally we would run every possible test on any patient that walks in with a stomachache. But there are limits to our economy and to doctors' time. It's a complex problem."

The problem isn't necessarily economical, a lot of those tests are actually very cheap.

The problem is that most tests have high false-positive rates, which you account for by using bayesian inference: the probability of having the disease when you have both symptoms and a positive result on the test, is very high, even if the test itself has a high false-positive rate.

But if you just run all tests in a healthy patient, you'll get back a lot of false positives.

https://people.ucsc.edu/~abrsvn/intro_bayes_1.pdf

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.