From tomk:
It's too easy to think that patients problems are caused by deconditioning. I also notice some higher functioning patients can be a bit judgemental of more severely affected patients and can think their problems are due to deconditioning.
I hadn't really noticed this on the smaller forums and support groups I've looked into, so was very surprised to see a bit of it here in the last couple days. Most of them will on the one hand admit that they've "been lucky", but seem unwilling (perhaps afraid?) to think of the "unlucky" ones: 'there but for the grace of God go I'. Two simple concepts...
(1) that many fellow ME/CFS patients cannot exercise at all, or would be harmed if they attempted it, and
(2) that the vast majority of doctors/ PT's will not understand (or care) about the differences between "good" and "bad" exercise/activity,
...do not seem to register in them, and therefore they do not see why those patients are directly or indirectly harmed by the continued promotion of terms like CBT and GET. It seems that some people can only understand it if they've had a "baptism by fire" themselves. This makes me really sad.
Very often these lower functioning patients are operating at their activity ceiling and the last thing they want to be told is that they need to exercise more
I'm currently in a nursing home with a large physical rehab component. The only member of that department who understood my situation was a former professor of physical therapy who happened to have a family member with severe ME/CFS. When I once explained to her that in the last two weeks I just seemed to hit a 'glass ceiling' she said "that 'ceiling' is your CFS". I told her about my ongoing miseries with the rest of the staff and she smirked and replied: "You aren't going to get any understanding from any of them. Nobody teaches about this disease in their schools, or if they do they teach it wrong. The only way to get them to call off a graded exercise program is to 'take a fall' or something. That scares them about liability."
I couldn't believe a health professional was suggesting "taking a fall", but her point was clear: the risk of injury from a fall is less than the risk of injury from excessive exercise for an ME/CFS patient. (But actually, I've been in a hospital situation where I accidentally did fall, and was merely picked up and forced to keep walking...).
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ETA - I had written this hours ago and fell asleep with the computer on my lap until now... then just clicked submit, and only now do I see the posts by teej and others! Thanks for thinking of me, teej (~picture embarrassed emoticon here.~)
It does not bother me when it happened, it bothers me that it keeps happening.. And what bothers me most is that if I was to (somehow) find the stamina to write a concise version of my story, some of our outspoken fellow PWC and, I'm afraid, the CAA would only see my case as an isolated, "extreme" example, rather than an indicator of what's REALLY happening to so many of us.
Maybe we need to petition them about this, too?!? (You would think they've had long enough to find out on their own.)
p.s do you know if Khaly sent them posts from the 'CAA brochure/Peter White' thread?