Cort
Phoenix Rising Founder
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I have silently watched as some of our sickest members have provided testimonials about the firsthand harm that CBT/GET has caused only to be countered by Cort's responses
I have NEVER discounted anyone's experience with CBT/GET. As Kim well knows there are many different types of these therapies. As she also well knows the ones that I was referring to are practiced mostly inside the US and they bear little resemblance to the damaging ones in the UK. As she also knows they make only mild claims of effectiveness (help people with symptoms). She also knows that the ones that I was referring to specifically try to avoid the push-crash cycle that the older methods use which result in into disaster.
She also knows that Dr. Klimas, Dr. Natelson and others who have behind us for years and have been researching the physiological aspects of CFS for decades support these programs for some individuals. None of them have ever stated they are cures. They have also couched their effectiveness in very limited terms.
The reason I was drawn into this discussion was because of the upset over their inclusion in the CAA's treatment brochures and the CME program. I think their prescriptions are very limited. I know people have been hurt by them in the past. I understand that they may be upset by my not acknowledging that. I apologize for that. I have, as everyone else has, gone through long periods of trying to ignore away my symptoms, push my symptoms, etc. None of that has worked for me.
Here's from the CME
Recommend CBT programs that focus on developing individualized activity programs that incorporate pacing and graded activity, and on coping behaviors, rather than programs that focus primarily on psychological factors.
That's what I'm referring to. Maybe nobody's getting that. Maybe the graded activity idea does not work but the idea behind that kind of graded activity is that once people get out of the push-crash cycle, maybe they can 'bank their energy' and start building up a bit more and feeling better and doing more. Nobody is talking about a cure. We
re really at a very low level of treatment in this disease. This is crude stuff - managing this disorder - so that the body can heal itself to the extent that it can - rather than treatment. We're like in the dinosaur age with regards treatment but that is where we are - to some extent stuck on management - there aren't that many good options. Again the protocols I was referring to
state they have limited effects
do not state that they are a cure or anywhere near a cure
are careful not to provoke patients into overdoing it
are focused on stopping the push-crash cycle
You can try to put me into an EST/CBT/Amygdala Retraining box but I don't think it fits. I fully acknowledge that EST and Amygdala and Mindfulness exercises have all helped with symptoms to some degree but none have fixed, or come close to fixing the core elements of this disorder for me. I agree its a complicated situation that I don't completely understand myself. Hopefully it will all come together over time.
By the way although we're focused on these kind of mindfulness practices I would note that the best reaction to anything that I've ever tried was to a heavy dose of Transfer factor and I have responded well to everything from D Ribose to glutathione to COQ10. My system for some reason rejects higher energy states and as my energy builds I generally fall apart - hence my focus on milder treatments that I hope will be able to coax my system along, somehow....