Hi Shane,
You said you had no problem with the following passage as long as the word "exercise" was switched with "activity". But I see a major problem with this response (I put part in bold):
She thinks that's the greatest exercise (or let's say activity) related risk for people with CFS? Unless that's been somehow taken out of context, she is badly mistaken, as you know from your own frightening experience! The greatest risk is dysfunction or damage - temporary or permanent - that results in long term disablement (or worse).
I bring this up because I was surprised you did not see how misleading that statement is to other physicians (or to patients), when there should be a warning label in its place... and I also bring it up because this is a perfect example of what is wrong with CAA literature on exercise/activity, etc... It is out of touch with reality - often dangerously so.
Dr. Yes, you're right. I do agree that the potential for permanent damage and even death is by far the most serious risk of exercise or inappropriate activity.
On an unrelated note, at my worst I had to go months without bathing (even with full assistance), and I have spoken to or read about many severely ill PWC who have had the same experience. (Thankfully that's not the situation now, as I have improved since then, but I am well aware of the fragility of my condition.) I bring this up not to compete with anyone (what an honor to THAT title), but to point out the following:
There is a level and PREVALENCE of severity of this illness that many of our most well-known doctors and the CAA seem totally unaware of.
I know that my own experience has included a sudden dramatic decline that I simply never imagined possible. It was clearly life threatening and it came after a period of ignoring physical signs that I was overdoing it. Still, I know that things could have been far worse. I don't know that I can imagine what far worse would actually feel like but I know my experience has been far from the worse possible case.