Hi Ada, sorry to hear of your illness, and hope I can be of some help. First of all, read this quote:

"The fact that a person qualifies for a diagnosis of CFS (a) does not mean that the patient has Myalgic Encephalomyelitis, and (b) does not mean that the patient has any other distinct and specific illness named ‘CFS.’ A diagnosis of CFS – based on any of the CFS definitions – can only ever be a wastebasket diagnosis, in other words, a misdiagnosis. Despite popular opinion, M.E. and CFS are not synonymous terms. All a diagnosis of ‘CFS’ actually means is that the patient has a gradual onset fatigue syndrome which is usually due to a missed major disease."

Taken from this site:
http://www.ahummingbirdsguide.com/

So what this is saying that you need to find a good doctor who knows something about these terms and get a proper diagnosis, and then treatment.
I urge you to have a look at this site which is aimed specifically at helping people such as yourself work through the medical jungle and get the diagnosis and treatment you deserve. Good luck, and stand up for your rights.