It's seems strange to say, but congratulations on accomplishing what all the highly trained medical people you sought help from couldn't...or wouldn't. It's a testament to your strength and your intelligence to have accomplished what you did. And I am right there with you with your disgust with the medical establishment. I keep hoping I might encounter that one doctor who will dig his/her heels in and see my condition as a great puzzle to be worked on, as it seems yours did when fed the data you had collected.

I assume you've found the EDS support forum which looks active. I hope it's as helpful to you as this forum is.

janie