Hi Candie, i'm sorry i don't have any advice for you, beyond what has already been mentioned. Contacting groups that are specifically for people with very severe M.E may be your best bet. In the UK there is the 25% group
http://www.25megroup.org/home.html i am sure that even though you are in the states they may be able to help with specialist advice and support.
I am a woman with moderate/severe M,E, but also have a daughter who has been very ill with possible M.E and needed me to care for her (although she is much better now) so i can understand something of what you and your family are going through.
I mainly wanted to respond to ask you if you could give messages to Billie of hope and supprt from us (when he is able to have contact with you) Please do tell him that even though he feels alone i am thinking of him and holding him in my thoughts and wishing strongly for some improvements for him, even if they are small.
For me being improved enough to sit and talk with my children,watch a movie with them and play a board game with them was amazing after finding it too hard to hold a conversation or sit at the dinner table with my family.
Now i am able to cook for them, chat to my hearts content (mainly) and even though i still feel ill while i'm doing it it is great to be at the heart of my family again. I can also go out now once or twice a week for a couple of hours and use a wheelchair for 'walks'.
I also send my warmest wishes to you, his mother, i understand how hard it is to care for a sick child and how distressing it is to see your child so ill.
Take care,
Justy.x