My bold and underline of the sentence beginning with "HOWEVER,..."
Dear Hope,
Thanks for your post. I've been told the same thing by the CAA. If the CAA is not an advocacy but is instead focusing on research they should 1) keep their mouths shut on advocacy issues and 2) get it right when they comment on research (find someone else to do it!).
Last Thursday, as Kim McCleary was telling the world that it was unfortunate that the "treatment" evaluated in the PACE trial was not available to most CFS patients in the US, I was seeing specialists at the University of Utah's Speech Pathology lab and being told that signs of the CNS damage that are now obvious began three three years ago, following a period of pushing beyond my energy envelope.
At that time, there was a period when my health began deteriorating quite rapidly and then I started acyclovir. That seemed to slow the decline but for some reason the decline seems to be accelerating again. Before starting desmopressin (for florid diabetes insipidus) and lisinopril (to treat essential hypertension that we now suspect was caused by vagal nerve damage), I had numerous TIAs each week (sometimes several in a day), a number of syncope episodes and a seizure as I was walking out of what turned out to be my last meeting as a community representative.
In part, I'm upset at the CAA as I feel that there is a very delicate balance between getting an optimum amount of activity and crossing the line into a zone where significant damage is being done that may take years to accumulate and by the time you see it, it's too late. Encouraging ME patients to undertake gradually increasing degrees of exercise is insane. I have never met a CFS patient that wasn't already doing too much. What happened to the notion of an energy envelope?
And as for the CBT garbage, CBT is not simply another name for supportive counseling. A primary target of Cognitive Behavioral Therapy is behavior and the other half is irrational beliefs & erroneous cognition. CBT was developed to treat phobias and anxiety disorders by encouraging patients to approach that which they feared and in the process, change their inner dialog. This was used to overcome "stimulus avoidance" that would lead to negative reinforcement and erroneous beliefs (eg. exercise makes me irrationally anxious - I avoid exercise and my level of anxiety lessens, I reinforce my irrational beliefs in my disability when my discomfort - and psychosomatic symptoms - decrease when I avoid exercise. Therefore, I need to exercise and ignore my body as my perception of being ill is caused by anxiety, not because there is anything physiologically wrong - here's a pretty good outline of CBT - http://www.jsot-jo.org/DBPPT/Infusing%20Occupation%20into%20Practice/8%20Cognitive%20Behavioral%20Therapy%20(CBT).ppt).
In this model, CBT and GET are interdependent and inseparable halves of a unified approach to treating irrational beliefs. This may lead a sub-group of mildly effected ME patients to temporarily increase their activity and attribute their poor response to anxiety and it does work for people whose primary issue is depression or anxiety but I am convinced that the most severe damage done by anything other than supportive counseling and a deep respect for a patient's energy envelop will only show up years down the road and long after anything can be done about it.
The damage done last Thursday by the CAA and Kim McCleary is immeasurable and it will come in the form of an uncritical and uneducated application of the maxim to ignore physical symptoms, increase activity and an ignorance (in the face of a golden opportunity to educate) on the importance of the energy envelope and the critical distinction between supportive counseling and CBT. The other area where this damage will be palpable is when ME patients go before uneducated and already biased disability judges who (with the blessing of the CAA) will force patients to go far beyond their "energy envelopes" in an effort to simply survive.
These patients will pay dearly for the Kim McCleary's sloppy attempt at something they now try to claim that they want no part of - "advocacy." I know this may sound like a harsh judgment but anyone speaking as an ME advocate must realize what is at stake for those they claim to support and the real damage done by careless comments. We would have been better off it the AA and Ms. McCleary had simply said she had nothing to say until after she had read the study (except perhaps that conclusions drawn by the authors needed a closer look as they were at odds with recently published studies done in other countries and Jason's recent publication on the importance of an "energy envelope") or if she had deferred to PANDORA for a public comment.
Dear Hope,
Thanks for your post. I've been told the same thing by the CAA. If the CAA is not an advocacy but is instead focusing on research they should 1) keep their mouths shut on advocacy issues and 2) get it right when they comment on research (find someone else to do it!).
Last Thursday, as Kim McCleary was telling the world that it was unfortunate that the "treatment" evaluated in the PACE trial was not available to most CFS patients in the US, I was seeing specialists at the University of Utah's Speech Pathology lab and being told that signs of the CNS damage that are now obvious began three three years ago, following a period of pushing beyond my energy envelope.
At that time, there was a period when my health began deteriorating quite rapidly and then I started acyclovir. That seemed to slow the decline but for some reason the decline seems to be accelerating again. Before starting desmopressin (for florid diabetes insipidus) and lisinopril (to treat essential hypertension that we now suspect was caused by vagal nerve damage), I had numerous TIAs each week (sometimes several in a day), a number of syncope episodes and a seizure as I was walking out of what turned out to be my last meeting as a community representative.
In part, I'm upset at the CAA as I feel that there is a very delicate balance between getting an optimum amount of activity and crossing the line into a zone where significant damage is being done that may take years to accumulate and by the time you see it, it's too late. Encouraging ME patients to undertake gradually increasing degrees of exercise is insane. I have never met a CFS patient that wasn't already doing too much. What happened to the notion of an energy envelope?
And as for the CBT garbage, CBT is not simply another name for supportive counseling. A primary target of Cognitive Behavioral Therapy is behavior and the other half is irrational beliefs & erroneous cognition. CBT was developed to treat phobias and anxiety disorders by encouraging patients to approach that which they feared and in the process, change their inner dialog. This was used to overcome "stimulus avoidance" that would lead to negative reinforcement and erroneous beliefs (eg. exercise makes me irrationally anxious - I avoid exercise and my level of anxiety lessens, I reinforce my irrational beliefs in my disability when my discomfort - and psychosomatic symptoms - decrease when I avoid exercise. Therefore, I need to exercise and ignore my body as my perception of being ill is caused by anxiety, not because there is anything physiologically wrong - here's a pretty good outline of CBT - http://www.jsot-jo.org/DBPPT/Infusing%20Occupation%20into%20Practice/8%20Cognitive%20Behavioral%20Therapy%20(CBT).ppt).
In this model, CBT and GET are interdependent and inseparable halves of a unified approach to treating irrational beliefs. This may lead a sub-group of mildly effected ME patients to temporarily increase their activity and attribute their poor response to anxiety and it does work for people whose primary issue is depression or anxiety but I am convinced that the most severe damage done by anything other than supportive counseling and a deep respect for a patient's energy envelop will only show up years down the road and long after anything can be done about it.
The damage done last Thursday by the CAA and Kim McCleary is immeasurable and it will come in the form of an uncritical and uneducated application of the maxim to ignore physical symptoms, increase activity and an ignorance (in the face of a golden opportunity to educate) on the importance of the energy envelope and the critical distinction between supportive counseling and CBT. The other area where this damage will be palpable is when ME patients go before uneducated and already biased disability judges who (with the blessing of the CAA) will force patients to go far beyond their "energy envelopes" in an effort to simply survive.
These patients will pay dearly for the Kim McCleary's sloppy attempt at something they now try to claim that they want no part of - "advocacy." I know this may sound like a harsh judgment but anyone speaking as an ME advocate must realize what is at stake for those they claim to support and the real damage done by careless comments. We would have been better off it the AA and Ms. McCleary had simply said she had nothing to say until after she had read the study (except perhaps that conclusions drawn by the authors needed a closer look as they were at odds with recently published studies done in other countries and Jason's recent publication on the importance of an "energy envelope") or if she had deferred to PANDORA for a public comment.
