That is what I am saying, ditch the confusing and loaded terms of GET and CBT completely.
Instead, say "professional counseling may be helpful to guide the patient in making adjustments and accepting the limitations of having a chronic and debilitating illness." I don't want to see CBT, even with caveat explanation of it anywhere in an authoritative CFS literature. Bad, bad word. Just leave it out. "professional counseling" is sufficient. And spelled out, it is fewer letters than cognitive behavioral therapy.
As for GET, I would avoid the word "exercise" because most people, no doubt docs included, think of aerobics and weight lifting as exercise. I would use "body activity".
But I do think the "exercise" issue needs to be addressed in information to patients and doctors, only because they will go the wrong direction based on understanding of fatigue in general, other illnesses and understanding of body. Diabetes has fatigue, yet exercise is good for them. Something needs to be in the literature to correct the paradigm.
The best helpful advice I got when I got sick was to not push it. I read a book by a dentist in Australia who had CFS and he talked about starting off not getting out of bed for three months. Wow, that's extreme, I thought. Then I went to FFC which recommended bed stretching, even finger push ups if that is all you can do. This totally changed my paradigm from the way I thought as a healthy person to making the changes I needed to start recovery. And, three years later, I had crawled out of the hole.
People do recover or see improvement with CFS. And some are not as severely affected as to be bed bound. I think this is part of the problem. CAA or any advice to patients or doctors need to explain the proper body activity for CFS patients (since they will likely suggest or do the wrong level or type if they don't get any advice). But it will vary drastically according to patient's level. How to address it, yet explain the variability based on illness severity is tough. But that is what I tried to do in my earlier post.
This is not a new concept. Someone with MS can be in remission. They can be to the point they stumble sometimes. Or they can be wheelchair bound.
And, if you start off as I did, with stretching in bed. In time, you might be able to do more, as you recover. Most of us do see improvement, if not recovery. So you wouldn't say the person who can now garden for thirty minutes a day (rest period following, of course) should still be only stretching in bed.
So I have no problem with gradual increase of body activity, as the physical condition allows, being careful to not exacerbate the symptoms by doing too much. For some, that may mean they don't increase.
But I don't think there is a threshold where if you have CFS you will never be able to do this or that. Last summer, I was feeling so well for so many months, I actually thought I might be able to one day go hiking or canoeing again. I got the flu which brought on a crash that I am still trying to climb out of. I see no hope of that at this point. But that is beside the point. I did improve to the point I could do a lot of activity I formerly could not do. And it was not causing crashes for many months.
I guess I am saying it needs to be addressed because of the misinformation, doctor ignorance and patient tendency to do too much. But we are all at different levels. And most of us will see improvement, meaning we can and should do more as long as we don't do too much and make ourselves sicker.
I thought my long paragraphs earlier were a way to address all these issues while avoiding the loaded words of CBT and GET.
Tina
