Disclaimer: I don't have ME and I'm not a medic.
But, I have several close friends who do suffer, one keeps trying to be an aviator but the ME prevents it.
There is a new(ish) specialist ME unit at the main hospital in Romford - they got my chum recently back from barely able to move in bed, to fully normal in a matter of a month. Hellishly impressive. It might be worth seeing if you can contact the consultant there.
There are also a couple of support groups around worth talking to.
G