Hi Jennie,
It is very true that the interpretation of terms like CBT and GET (as well, more recently, as pacing) unfortunately varies and has been greatly distorted by many -- often intentionally, to suit a differing belief (not a scientifically valid paradigm) about the aetiology of ME/CFS. As I have stated before, this distortion has allowed CBT/GET to become a key entry point into ME/CFS treatment for proponents of (unscientific) psychosomatic speculations, and the term CBT in particular has lost much of its original meaning and semantic context. Politics and bad science have rendered it a deceptive and therefore harmful term and concept for people with ME/CFS. As a practical measure, the term needs to be abandoned in general and by the CAA in particular. A new, concisely defined term that cuts through the distortion would be an appropriate replacement, IF it has shown truly significant positive effects in patients in scientifically valid trials (where "CBT", whatever that term means on most days, is clearly on shaky ground). At this point the only such therapy is supportive counciling, as I mentioned in my previous post. This argument has been made repeatedly, by many people, throughout this forum.
As for the GET issue, I ask you to re-read my last post, to begin with. The semantics issue is far less a problem with GET, and I have defined both it and its common mutations, pointing out the underlying theme of consistently increasing activity, which is an inherently flawed approach for most PWC. In other words, it doesn't matter how you alter the definition; the core idea will not work for many of us, and it is dangerous to promote this as any sort of therapy, let alone a 'treatment', given (1) the evidence for exercise-induced pathophysiology in ME/CFS patients, (2) the unacceptably high rate of negative responses to GET (patients reporting it actually harmful) in various surveys, (3) the poor scientific quality of many of the studies that have found favor with GET, and (4) the very high likelihood of poor interpretation or implementation of such activity programs by an unacceptable number of practitioners (as you correctly noted), despite all the warning labels in the world on CAA literature about GET.
The responsible thing for the CAA to do, as I and others have argued, is to stop promoting CBT or GET in any way. (Especially GET, or CBT with a GET component, as it usually has.) Supportive counciling can, if the therapist and patient agree upon it, use techniques common to cognitive therapy or even CBT (which was derived from cognitive therapy), without a preconception that a patient has false illness beliefs, and without employing any GET or similar activity program (I do not consider 'pacing', as was once defined, to be a form of GET, but as I said there are significant efforts to improperly redefine it).
Lastly, I really want to make clear that CBT and GET are frequently labeled as 'treatments' in an unqualified manner that is highly confusing, especially to medical practitioners. 'Treatment' by itself suggests to many doctors a modality aimed at the underlying cause of the disease, rather than a supportive therapy aimed at reducing its overall impact on quality of life. The only sense in which the word can be applied to CBT or GET is as symptomatic treatment, i.e. therapy that eases the symptoms without addressing the basic cause of a disease. Even this would be a questionable use of the word, as CBT and GET at BEST only address a few of the symptoms of ME/CFS but cannot help many others (and indeed may worsen them, in the case of GET).
It is very true that the interpretation of terms like CBT and GET (as well, more recently, as pacing) unfortunately varies and has been greatly distorted by many -- often intentionally, to suit a differing belief (not a scientifically valid paradigm) about the aetiology of ME/CFS. As I have stated before, this distortion has allowed CBT/GET to become a key entry point into ME/CFS treatment for proponents of (unscientific) psychosomatic speculations, and the term CBT in particular has lost much of its original meaning and semantic context. Politics and bad science have rendered it a deceptive and therefore harmful term and concept for people with ME/CFS. As a practical measure, the term needs to be abandoned in general and by the CAA in particular. A new, concisely defined term that cuts through the distortion would be an appropriate replacement, IF it has shown truly significant positive effects in patients in scientifically valid trials (where "CBT", whatever that term means on most days, is clearly on shaky ground). At this point the only such therapy is supportive counciling, as I mentioned in my previous post. This argument has been made repeatedly, by many people, throughout this forum.
As for the GET issue, I ask you to re-read my last post, to begin with. The semantics issue is far less a problem with GET, and I have defined both it and its common mutations, pointing out the underlying theme of consistently increasing activity, which is an inherently flawed approach for most PWC. In other words, it doesn't matter how you alter the definition; the core idea will not work for many of us, and it is dangerous to promote this as any sort of therapy, let alone a 'treatment', given (1) the evidence for exercise-induced pathophysiology in ME/CFS patients, (2) the unacceptably high rate of negative responses to GET (patients reporting it actually harmful) in various surveys, (3) the poor scientific quality of many of the studies that have found favor with GET, and (4) the very high likelihood of poor interpretation or implementation of such activity programs by an unacceptable number of practitioners (as you correctly noted), despite all the warning labels in the world on CAA literature about GET.
The responsible thing for the CAA to do, as I and others have argued, is to stop promoting CBT or GET in any way. (Especially GET, or CBT with a GET component, as it usually has.) Supportive counciling can, if the therapist and patient agree upon it, use techniques common to cognitive therapy or even CBT (which was derived from cognitive therapy), without a preconception that a patient has false illness beliefs, and without employing any GET or similar activity program (I do not consider 'pacing', as was once defined, to be a form of GET, but as I said there are significant efforts to improperly redefine it).
Lastly, I really want to make clear that CBT and GET are frequently labeled as 'treatments' in an unqualified manner that is highly confusing, especially to medical practitioners. 'Treatment' by itself suggests to many doctors a modality aimed at the underlying cause of the disease, rather than a supportive therapy aimed at reducing its overall impact on quality of life. The only sense in which the word can be applied to CBT or GET is as symptomatic treatment, i.e. therapy that eases the symptoms without addressing the basic cause of a disease. Even this would be a questionable use of the word, as CBT and GET at BEST only address a few of the symptoms of ME/CFS but cannot help many others (and indeed may worsen them, in the case of GET).