Update: Now I am investing in walking, and thats helping I think. I'm also stretching. My muscle aches continue but in the past week or so they've improved since I cut out lactates (calcium and magnesium lactate supps).
Exercising did help me feel "human" for at least a few hours, but the crashes and damage it caused afterwards mean I have to have a different approach.
However, if all I do is rest, then my body gets stiff and I feel lethargic, and my cognitive function goes down. Its finding the balance somewhere inbetween resting and activity.
I hear so much about Dr.Meirleir and how he's helping people and I would love to see him. I actually am a Brit living in the US but if I visit the UK again in the near future I might pop across to Belgium to see him.
He's dealing with Lyme people and I had something similar in Typhus. I think he's the guy that'll be helpful to me. I've seen some very good doctors that have each helped me +5% here and there, but not a significant change in heath to be honest. I might look into Oxalates as well and start to read up on that.