Well, I said I would let you know. I did talk to someone at the CDC, someone whose name is likely known by you guys, although I was not familiar until I looked up the name after the call.
But I find myself in an ethical dilemma. I am a reporter by trade. And in my work, I do not report on CFS issues. I am now just doing local fluff stuff for another newspaper. (As some of you know, I used to have my own, but had to close it.)
When I called the CDC, I was calling as a patient. Therefore, I did not say anything about being a reporter to him. I was asking for my own pure need to know what I truly have. But now I wonder if I asked him questions and then relay them here, then am I a patient relaying information (which requires no disclosure) or am I being a reporter (which ethically requires disclosure). The lines are blurred of what is a reporter and what is a patient relaying answers she was told about her own condition. But so as to not to even inadvertently make someone feel they were tricked, I am only going to tell you the general position of CDC. It is unethical for a reporter to ask someone questions to report without revealing what they are doing, unless they are doing "undercover work." Of course, as I said, I was asking as a sick person, not doing undercover work. But if I relay too much of the discussion, then it could be construed I am acting like a reporter. So, generally, their position is:
Yes, CDC considers ME to be different from CFS, no matter what others say. They are not studying ME. It would be difficult to find a knowledgeable doctor for ME in the US. There is no test for either one. A person should describe their symptoms to a doctor who can then look for underlying biological cause instead of going to doctor asking if they have a certain disease. Treat the abnormalities found to see if it eliminates the symptoms.
Tina