I had a nice reply all typed up and (BAM!) my whole message deleted! I don't know what I did. Anyway....let's see if I can reconstruct what I said. I am sorry that your son is going through all this and it is a shame that you had to go to another state to find a specialist. It shouldn't be that way. From what I understand though, the majority of the medical community doesn't acknowledge CFS. Do you ever wish he could just be a child and not have to experience all this? I know I feel that way about my daughter. With her, I wonder where the starting point was. She has had so many illnesses, symptoms and tests (both invasive and noninvasive) since she was young. She has IBS, allergies and asthma, hiatal hernia, esophagitis, ovarian cysts, anemia, fibromyalgia, interstitial cystitis, and then for the last two years she has had intermittent fevers, body aches, chills, sore throat, swollen glands, fatigue. She goes through these cycles where she gets a viral type illness with those symptoms for about five days and then she gets better except for the body aches and swollen glands. She had what they thought was mono a couple of years ago but she tested negative.
I have my long list of questions for the specialist. I will sure let you know what I find out and you do the same, in regard to your son.