We help people understand how their lives are going to change and what their life is going to mean to them. We are fighting for the right to be seen and heard so doctors don't fight them but work with them. I am one of the leaders in research for this disease and I feel that this is a long term Central Nervous System systemic auto immune degenerative disease with no known cure, very little treatment and not enough research. Action has to be taken to fight the ignorance of doctors because literally "it's all in your head" but the symptoms are real. The pain is real. The pressure is real. And families are torn apart because there is not enough information to assist them as their children and loved one ages. Please HELP ME in our struggle to establish a protocol.