Say it isn't so Danny! :headache::headache:Secondly, the people in our local support group who tend to do better, gradually but consistently improving over time, have been those who for the most part stay away from various forums (sorry!) and/or have found that constantly checking for news, etc., online about CFS makes them worse.
Forgot to mention in my excitement that one of the most interesting things for me was Dr Jamie's comment that ME/CFS is not a heterogeneous condition as we all think, despite the huge range of symptoms; rather there is heterogeneity in the underlying malfunctions such as widespread low-level inflammation showing up as migraine in one person and something else in another. I've never heard that thought expressed before.
And I absolutely agree with the kind of Zen-like balance it is best to return to as much as possible, or else there is an immediate pay back with serious stress and PEM. The more badly I am doing, the more frightening it is, or it certainly would be if I took a "normal" attitude to it-- but I need to keep letting go of my fears and dire conclusions, no matter how rational they seem.
Trust in the unknown no matter what, seems to be the ticket. And of course, doing the best I can. If normal people knew the efforts I/we make to do ordinary things, they'd be very surprised and would probably have more compassion. But just try to explain to them, and, in my experience anyway, the truth most often gets lost in the attempt to communicate it. Guilt, denial and projection come in. Personally, I've found sometimes the truth is better communicated by not trying to explain. So there too, a Zen-like silence or letting be can actually help the communication. And if I were even more of a Zen kind of practitioner, I might know which situation calls for which approach, because there is no one best way, consistently, to deal with this!
What do you all think? Would having your physician be a fellow CFS sufferer be a plus to you?
Valentelynx, absolutely you should apply. Knowing ME/CFS from the inside, as someone said, is an extremely valuable asset. Add that to an open medical mind, and you sound like the kind of doctor many of us have hoped for.