[TheCarl]

@ummwhat - I feel your frustration and know exactly how you feel because I too go through this. Its a never ending cycle for me, except Im self employed. Ive been through a ton of jobs and harassment as this has been going on for 10 years. Its crazy to even say that out loud, its a long time.
Maybe why healthcare professionals dont take us seriously is because we are all hiding behind the curtain. Im guilty of this too. We use a forum that strives on anonymity to hide our identities. Maybe this is why we arent taking seriously by doctors. A lot of Medical forums like ones for cancer are similar to Facebook. Theres enough resources and information on its users for a doctor to reach out to those people for treatments; rather than us trying to find a needle in a hay stack. They also have experts who chime in when a user suggests a treatment and not just going by word of mouth. I dont think its the media as what we need, but a better way for doctors to find the patients they are trying to treat. We live in a big world and this forum is a little blip, not enough to make a splash yet. We have no doctor lists, no Medical professional who work in this speciality, and now way of knowing whos treating patients like us. Idk maybe Im crazy too.

Couldn't agrre more. i am very grateful that this blog exist, but we as a community of lg must do more to make the scientific world open up their eyes for us. We actually have to start writing papers avout the condition ourselves. Doing our own research etc. First step could be to simply gather a lot of info from users of this forum.