My heart is breaking for you, for me, for all of us who have this problem but I am pissed we are the only ones who know what an awful way it is to live. There is a gentlemen on this board who says he is a scientist doing research... he is a hope.
I have been to UCLA to Loma Linda University to have tests done but have found nothing "wrong" yet because the research is not being done so they don't know what to look for I suppose. All I can think of is yes write letters (or start an email campaign) ask for those who have the expertise to start a testing program devise a test and test those of us with this condition to find the common thread. There has to be one.
I hope Arun the scientist reads these posts and responds his screen name is scientist42. Go to his posts and read them he has some interesting observations.
Sarah I am sobbing here for you... I will do anything and everything in my power to get help for people like us. I can only think of writing letters to universities all over the world would be a way and that is what I am going to do.
Using this board as a place where they can go and read for themselves the need for research in this area. See for themselves the desperation, the hopelessness, the isolation... Hiding out, living the way we do, is no way to live. It is not right we have not received the attention we deserve.
Hang in there... it is up to people like us to speak out for all of us... to demand help.
Thank goodness for the Internet so we can communicate. Do not allow this condition you are not at fault for having to take your life away from you. As uncomfortable a way it is to live I refuse to give up.