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And yet it is being downvoted, which is one of the more polite responses I get. It used to be a lot uglier (even on HN, which is generally a bastion of civility) and I left a lot of lists, or was thrown off of them, where it simply wasn't constructive for me to try to participate.

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I would suggest that part of the reason is that it comes across as you having an axe to grind, rather than what you’re saying. The conversation was one party agreeing with you about there not being great treatment options until recently when studies have finally been conpleted with you saying, ‘you’re wrong, my experience proves it, anything you say is an attempt to invalidate my experience’

That is quite probably not at all what you intended but that is how I interpreted that exchange.

The enormous degree to which I am repeatedly invalidated is apparently lost on you. If I were being taken at all seriously then people would be asking me how on earth I am doing this, not being faux respectful on a foundation of "obviously she is full of crap and knows nothing."

Doctors never have any interest whatsoever in how I am getting healthier. They merely assure me it has zero relevance to anyone else on the planet.

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