CME on avoidant behaviour (their sources)
(I wrote this out earlier, as a follow on from my other posts on the exercise phobia psychobabble. I haven't read all the messages in between yet.)
Just to look at the source of this comment from the CME:
These are the references they give:
Unfortunately I cannot get the second paper, but it is a review rather than a study, so if he does mention this avoidance he is probably just quoting someone else's (CBT-school friendly) opinion. There is no evidence for the avoidant behaviour theory.
The first reference is an editorial, i.e. an opinion piece, also not a study, by Andrew Lloyd who is CBT School (though he has done some interesting research recently into infections and ME/CFS).
So the CME is getting some of its ideas directly from the CBT school. (I also noticed some other questionable comments, and sources for those comments, in the CME matierial but I want to focus on this issue now).
I had a post earlier about the CBT school and their thinking on our allegedly avoidant behaviour
http://www.forums.aboutmecfs.org/sh...-s-the-CAA-doing&p=69923&viewfull=1#post69923
Just to look at that Andrew Lloyd editorial. Even the title is problematic:
And this is what he says about our behaviour (it is typical CBT-School stuff).
[These people think we don't have an ongoing disease but are misinterpreting normal bodily sensations as signs of disease. They think our misinterpretaton of symptoms, leads us to engage in abnormal behaviour, and they think that it is this (rather than any disease) that causes our symptoms. So to summarise, they think that our incorrect thinking and behaviour causes the continuation of symptoms. Back to Lloyd's Editorial]
So they don't believe us in what we say about exercise. They also decide in their own head what we are thinking, and just run with their own view of what they think we think and do (CBT-School people often have an extreme and distorted view of how we think and behave).
They want to give us CBT to change our beliefs that we have an organic condition causing a problem with exertion, so that we will stop being silly and get back to normal. That is it in a nutshell.
Notice the use of the word may (in "may reach the conclusion that it is best to avoid exercise") They don't have evidence, they are just guessing that we are behaving in a certain way, and they go on to base their whole ideology and treatment on their own abstract intellectual speculation.
Patients tend to only avoid the exertion that causes a bad pay-back. So they might do a bit of exercise, or some sort of exertion, but try to stay within their limits. Many patients with ME/CFS do exercise but within their limit. Others exercise some of the time, when they can. Relapsing/bad flare-ups from over-exertion is a common problem. This problem would not exist if patients were avoiding these activities.
There is no evidence that ME/CFS patients abnormally avoid activity, never mind the " inappropriately avoid all activity" that the CME would have us believe.
Funnily enough (or not funny really) the CAA actually word their comment more strongly than Andrew Lloyd does here, as he just talking about avoiding exercise (so in theory the doctors might just pick on you for not exercising, and not start thinking you were avoiding ALL, or other, activities, or basically choosing not to do things). All of Andrew Lloyd's references for his Editorial are from the psychosocial school of thought, other than the reference to the SF-36 (this is a questionnaire to assess people's self-assessed functioning in areas such as physical and emotional functioning, so it is basically a technical sort of thing).
[This Lloyd Editorial is bizzarely contradictory. On the one hand Llyod basically criticises patients for avoiding exertion which makes them worse, and suggests CBT to modify their thoughts and behaviours, but then seems to think avoiding pay-back is ok, though only when it fits his agenda (He only mentions this is ok in the context of a "graded" exercise programme, where the patients are being good little boys and girls. It is not graded of course if their activity levels are fluctuating, and there is no evidence that patients actually increase activity on GET programmes).]
(I wrote this out earlier, as a follow on from my other posts on the exercise phobia psychobabble. I haven't read all the messages in between yet.)
Just to look at the source of this comment from the CME:
Some people with CFS inappropriately avoid all activity because personal experience has demonstrated a link between exertion and symptom severity.[69,70]
http://cme.medscape.com/viewarticle/581527_8
These are the references they give:
Lloyd AR. To exercise or not to exercise in chronic fatigue syndrome? No longer a question. Med J Aust. 2004;180:437-438.
Goshorn RK. Chronic fatigue syndrome: a review for clinicians. Semin Neurol. 1998;18:237-242.
http://cme.medscape.com/viewarticle/581527_8
Unfortunately I cannot get the second paper, but it is a review rather than a study, so if he does mention this avoidance he is probably just quoting someone else's (CBT-school friendly) opinion. There is no evidence for the avoidant behaviour theory.
The first reference is an editorial, i.e. an opinion piece, also not a study, by Andrew Lloyd who is CBT School (though he has done some interesting research recently into infections and ME/CFS).
So the CME is getting some of its ideas directly from the CBT school. (I also noticed some other questionable comments, and sources for those comments, in the CME matierial but I want to focus on this issue now).
I had a post earlier about the CBT school and their thinking on our allegedly avoidant behaviour
http://www.forums.aboutmecfs.org/sh...-s-the-CAA-doing&p=69923&viewfull=1#post69923
Just to look at that Andrew Lloyd editorial. Even the title is problematic:
To exercise or not to exercise in chronic fatigue syndrome? No longer a question Andrew R Lloyd MJA 2004; 180 (9): 437-438
http://www.mja.com.au/public/issues/180_09_030504/llo10096_fm.html
And this is what he says about our behaviour (it is typical CBT-School stuff).
Lloyd
The CBT approach in treatment for patients with CFS is based upon the premise that cognitive attributions and behavioural patterns act as perpetuating factors for symptoms.
[These people think we don't have an ongoing disease but are misinterpreting normal bodily sensations as signs of disease. They think our misinterpretaton of symptoms, leads us to engage in abnormal behaviour, and they think that it is this (rather than any disease) that causes our symptoms. So to summarise, they think that our incorrect thinking and behaviour causes the continuation of symptoms. Back to Lloyd's Editorial]
Lloyd
In particular, given that the cardinal phenomenon of fatigue in CFS is characterised by a marked and prolonged exacerbation of symptoms following minor physical activity, patients may reach the conclusion that it is best to avoid exercise. Thus, patients may develop an understandable cognitive attribution that exercise is harmful in the short term (as symptoms are worsened) and detrimental in the longer term. This leads to altered behaviour in the form of reduced physical activity with consequent deconditioning.... Accordingly, the CBT approach generally seeks to alter these cognitive attributions and modify the associated behavioural patterns... one can safely conclude from these studies that graded physical exercise should become a cornerstone of the management approach for patients with CFS
So they don't believe us in what we say about exercise. They also decide in their own head what we are thinking, and just run with their own view of what they think we think and do (CBT-School people often have an extreme and distorted view of how we think and behave).
They want to give us CBT to change our beliefs that we have an organic condition causing a problem with exertion, so that we will stop being silly and get back to normal. That is it in a nutshell.
Notice the use of the word may (in "may reach the conclusion that it is best to avoid exercise") They don't have evidence, they are just guessing that we are behaving in a certain way, and they go on to base their whole ideology and treatment on their own abstract intellectual speculation.
Patients tend to only avoid the exertion that causes a bad pay-back. So they might do a bit of exercise, or some sort of exertion, but try to stay within their limits. Many patients with ME/CFS do exercise but within their limit. Others exercise some of the time, when they can. Relapsing/bad flare-ups from over-exertion is a common problem. This problem would not exist if patients were avoiding these activities.
There is no evidence that ME/CFS patients abnormally avoid activity, never mind the " inappropriately avoid all activity" that the CME would have us believe.
Funnily enough (or not funny really) the CAA actually word their comment more strongly than Andrew Lloyd does here, as he just talking about avoiding exercise (so in theory the doctors might just pick on you for not exercising, and not start thinking you were avoiding ALL, or other, activities, or basically choosing not to do things). All of Andrew Lloyd's references for his Editorial are from the psychosocial school of thought, other than the reference to the SF-36 (this is a questionnaire to assess people's self-assessed functioning in areas such as physical and emotional functioning, so it is basically a technical sort of thing).
[This Lloyd Editorial is bizzarely contradictory. On the one hand Llyod basically criticises patients for avoiding exertion which makes them worse, and suggests CBT to modify their thoughts and behaviours, but then seems to think avoiding pay-back is ok, though only when it fits his agenda (He only mentions this is ok in the context of a "graded" exercise programme, where the patients are being good little boys and girls. It is not graded of course if their activity levels are fluctuating, and there is no evidence that patients actually increase activity on GET programmes).]