Reply to thread post range 701-720
WillowJ wrote: yes, because doctors can find out everything they need to know via a cursory visual examination and standard screening tests. they do not want or need patients to "self-report" the "status" of being "sick" or experiencing "symptoms"
Dolphin wrote: Except when they are doing UK5m (US$8m) trials of CBT and GET in which case what patients self-report on particular questionnaires is perfectly fine.
urbantravels wrote: Only when they have been thoroughly indoctrinated first about what answers they ought to give.
Dolphin wrote: And used the questionnaires before in smaller trials.
Hehe, so true!
[wdb quoting the GET patient manual: (in bold)] "in previous research studies most people with CFS/ME felt either 'much better' or 'very much better'".
Equivalent claims are common, but it looks like the PACE results dispute the "most" part, when using these outcomes on a modified clinical global impression: 41% for CBT/GET vs 31% for APT and 25% for SMC.
In the original protocol: "
We propose that a clinically important difference would be between 2 and 3 times the improvement rate of SSMC." We are not given odds ratios for primary measures, and I don't know how they arrived at these values, but we are given OR for the clinical global impression:
APT vs SMC: 13 (0821); p=031 | CBT vs SMC: 22 (1239); p=0011 | GET vs SMC: 20 (1235); p=0013.
CBT vs APT: 17 (1027); p=0034 | GET vs APT: 15 (1023); p=0028.
oceanblue said: it's the sticking to a '70% limit' of perceived energy that dooms APT to failure, in my view.
I agree. Pacing is not about avoiding all exacerbations, and I also think "perceived energy" is not the only measurement or necessarily the best description. CFS is not just the reduction or absence of something "good" but also the increase or presence or something "bad", both have to be taken into account.
urbantravels wrote: [...] a sizable portion of this cohort in fact probably had primary depression, for whom this particular line of treatment would have been disastrous.
urbantravels wrote: Do patients among themselves tell each other that pacing will bring about "natural recovery"? Do the designers of the PACE protocol themselves *believe* in this natural recovery? Of course not, because they believe that ME is a cycle of fear of activity and deconditioning, and that pacing will only perpetuate the disease. Where did they get this idea about "natural recovery" anyway?
Good points.
WillowJ wrote: I think one of the problems with APT is that they really jerk the patients around in terms of expectations. [...]
The inconsistency you mention is probably because they don't understand pacing nor believe in it. Then of course there are suspicions that they don't want it to succeed because it is a threat to them, and the rationale behind it competes/conflicts with their own approach. This is just as much of an ideological struggle as a scientific one. The PACE trial was probably never designed to give pacing the best chance, but more about demonstrating their own CBT/GET approach is superior.
WillowJ wrote:
true that CBT is not a silver bullet for any psychiatric diagnosis. however the working model of the wessely school crowd is that cfs is not even equivalent to a psychiatric illness. an abnormal illness belief is a delusion, not an actual illness like a standard psychiatric illness.
of course they have so much doublespeak they are likely to claim in the self-same paper that (a) cfs is hysteria and (b) it would be awful for anyone to say cfs is somehow not real, but even whilst arguing the latter point the best they can do is compare cfs to the disordered self-assessment of anorexia nervosa. [this is not to suggest that anorexia nervosa is somehow not real, not serious, or not devastating, because it is all of those, but it does include an element of incorrect self-assessment, which is simply not the case in me/cfs (except for the part where the PWME is likely to overestimate her or his ability), but the point here is that cfs is not an inability to determine when one's self is truly ill and in fact disabled, which is what the psychobabblers are suggesting]
For a hysteria, claim (a), CBT should work just fine and ought to be a silver bullet
the fact that it is not a silver bullet calls their model into serious question, doublespeak and all--inability to determine when self is ill and disabled should also be readily correctable through CBT, supposing social support is provided which was ostensibly done in this particular trial, at least at a surface level (my contention is that this support is hypocritical since it involves actually disbelieving the patient while providing verbal support).
Some beliefs and cognitions can be rather difficult to change, but I agree there is double-speak and a disconnect between hypothesis and reality. I think they have toned down some of the rhetoric or at least worded it better for different audiences, and it is difficult to say how much goalpost-shifting has occurred over 20 years. The so-called "Wessely School" see themselves as the moderates between the purely organic position the purely psychological position. Their current theme in a soundbite is: CFS symptoms are "physical" but "functional" and misinterpreted as a disease process, primarily perpetuated by cognitive and behavioural factors. Wessely seems to think of CFS as a delayed recovery from an event that everyone else recovers from naturally, that's why he allows for an infectious "trigger". Their comparison to anorexia nervosa is a good example of how they view the "physiology" of CFS. There is
an article on the KCL website about the "Physiological Aspects of CFS" which is a better example, limited to the effects of deconditioning, anxiety, hyperventilation, stress, depression and circadian rhythm disturbance, and we are told (in bold!) "
It is important to point out that these changes are reversible with physical rehabilitation and/or exercise."
In my opinion, psychologists like Leonard Jason and Fred Friedberg are the real "moderates". They acknowledge that psychological factors can play a role in CFS but apparently have not been seduced by psychobabble, hyperbole, and the convenient dismissal of biomedical research.
Snow Leopard wrote: They cannot claim that the CBT model works, unless they have objective measures of behavioural changes, specifically actometer measurements. Otherwise the change is merely 'cognitive', and potentially due to inflated self-efficacy and potentially due to 'response bias'. You could say that the patients didn't want to feel that they had wasted their time, as well as the time of those who provided the treatment and thus were likely to report subjective improvements on questionnaires. Hence the minimal effect shown on 5 year follow-ups.
I agree, and "inflated self-efficacy" is an interesting confounder for a "mind over body" attitude.
oceanblue wrote: Could you clarify how you did this and maybe give links to your online calculator. I used a pooled SD (combining SD of both SMC and GET) to get my figure of 0.34 but I'm not sure if I did this the right way.
I just redid it and you're right, pooled meanSD of SMC at 0 and 52 weeks vs GET advantage over SMC at 52 weeks was Cohen's d=0.348. I probably did something stupid under a haze of brain fog so I deleted it.
oceanblue wrote:
CBT is very effective for some psychological disorders eg it has a large effect on generalised anxiety, PTSD and Depression (see this review of meta-analyses). Given this, the fact that they have clearly identified 'flawed thoughts', CBT is supposed to be good a tackling such flawed thinking and they've had 20 years to optimise their treatment I don't think they can realistically blame the patient.
Also, the high levels of patient statisfaction (82%) and strong therapeutic alliance (independently rated as 6.5/7) for PACE CBT suggests the therapy was implemented effectively; it's failure indicates a problem with the underlying biopsychosocial model.
Good points.
Sean wrote:
As I recall both Prins and Chalder have made that assertion, and no doubt others have too in one form or other.
Of course, such an explanation is totally unfalsifiable. No matter how much CBT doesn't work, they can just keep saying you are not trying hard enough, which is a particularly nasty assertion as it can never be proved or disproved, leaving patients at the mercy of the subjective opinion of the vested interest ridden 'expert'.
The fact that they have to resort to such blatantly self-serving pseudo-science to defend their model is powerful ammunition against it, and they should be questioned vigourously about that whenever possible, without mercy.
It is just the establishment version of the same poisonous double-bind loaded drivel found in that New Age fraud The Secret.
I'm afraid that you are correct. I would be scared to have Chalder as a therapist.
