Good thread, BTW.

The first time I read the title of this thread, I read it as "Ethically Shameful". Then upon reflection I thought it probably doesn't matter. Then upon further reflection, and thinking about what I wanted to say, I think it does matter.

Medicine knows a lot, and is learning more every day. But still, with all our technology, there is still more that medicine doesn't know than it does know. What you say is essentially true:
Many doctors, including specialists, have acknowledged this, and that their savvy patients often know more about their conditions than they (the doctors) do, because the patients are suffering with [whatever] and have the time and incentive to do the research.

Medical research is more often driven by economic$ than by altruism; there is more money to be made on treatments and drugs that are patentable than on cures and treatments that aren't patentable. What's been mentioned about the rarity of the condition is also valid. Theoretically (and rhetorically) the profits from these patentable wonders should drive further future research; unfortunately, in reality they often go toward ever-increasing dividends and bonuses.

Going back to the original question/quote, Doctors often aren't aware of [RSD/CRPS] because it is not (yet/sufficiently) taught in medical schools, and they are also taught to dismiss/reject anything that is not taught in medical schools (like information gleaned from the internet and anecdotal evidence from patients). Doctors often admonish us that we shouldn't believe everything we read on the web, and for the most part I have to agree with that, but that's not the same, and doesn't mean, we shouldn't believe anything we read on the web. The legitimacy of sources is everything.

A lot of people on this site are helping themselves and others by sharing the information they glean here and elsewhere, which was not possible as little as 15-20 years ago. That, IMO, is an amazing thing.

As to the ethical part I mentioned above, I think our doctors do truly want to help us, but they have their rules and standards, and they are taught that to be ethical, they must adhere to those rules & standards. We need to help our doctors help us, but getting them to accept/listen is going to require that our homework be done carefully, come from acceptable/legitimate sources, and done to their standards. (I've had doctors dismiss/reject articles/studies from Mayo, FCOL, so this is no easy task.) We have to learn to play by their rules if we want them in the game, and I think we do.

Doc