Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 15, 2013.
This was an inpatient programme. It presumably is expensive.
Follow-up was six months later.
Here are the basic results:
They use actometers, but only at baseline (or at least that's all they report anyway):
They make a bit of a fuss about how their study is better than another study as they use actometers (rather than a subjective measure) to look at predictors, without highlighting that their own study doesn't use actometers as an outcome measure:
They again praise themselves for using actometers in the concluding paragraph:
If they had used them at outcome, and they showed a favourable result, they would surely have highlighted it. Demonstrating a clear objective improvement at outcome, strongly correlated to self-report measures and CBT/GET, would be a serious feather in their cap.
Translation: Patients who are less sick at the start of the trial tend to have better outcomes on subjective self-report measures.
yes, I was thinking the reasoning looked a little circular.
Is it customary to use two different tests for significance on different data bits? just curious...
When these results are combined with some other results, for some factors the results are not consistent:
A better understanding of the pathophysiology of the condition, I think would give more interesting answers than more and more studies like this.
Not that common, I think.
Here is why they did it:
Another frustrating thing about all this is all the signs are that they're not particularly interested in the predictors in terms of deciding who should or shouldn't get a therapy.
Also, the things measured are only done at one moment in time, while there could be some variation e.g. in terms of self-efficacy/degree to which one feels in control. Also, this could also change during therapy.
So, after decades of CBT/GET for CFS research, weakish contradictory findings for almost all the pillars of their model, except for the circular reasoning factor of disability benefits, the effects of therapy-infused self-efficacy response bias on reported symptoms, and the actometers which have previously debunked presumed increases in activity but now they did not report on in this study? Notice the self-praising for using actometers despite not reporting the actual results at followup.
The Dutch researchers still use the Vercoulen et al model of CFS. Did they ever acknowledge or respond to the study by Jason et al which long ago debunked that model for CFS but found that it fit chronic fatigue for psychiatric diagnoses?
CBT/GET proponents might get more interested in a hurry when biomedical science starts offering patients real treatments and then newly resourced ex-patients start suing for the quackery pushed onto them over the years. Guessing from this study, it looks like the more severely affected are less likely to respond to CBT/GET? Re predictors and mediators, limited information on the PACE results suggests nothing which stands out except a small effect on altering patients' perceptions.
One issue that does not get mentioned much is not all GET or CBT is the same. The model that Jason has studied has quite different expectations (and seems much more acceptable to patients), but seems to have similar outcomes. Yet this is quite different to the model that is used in Europe.
This finding strikes me as a little odd.
If you were just looking at the natural course of the illness, you might expect those who reported a greater sense of control over their symptoms to do better than those who reported less control. (I don't think the paper considers this, but I haven't read the full text).
However, this study uses a combination of CBT and GET, both of which explicitly aim to give patients a greater sense of control over symptoms. So you might expect those struggling most to control their symptoms to improve the most if the therapies do what they claim: through the wonders of CBT and GET these patients gain greater control over theri symptoms and so improve. Instead the reverse seems to be true - those reporting least control over their symptoms did less well than those who already had a better sense of control over their symptoms before the study started. That suggests that the 'control' aspect of CBT/GET doesn't have much impact.
Or have I missed something important here?
Yes, there could be something to what you are saying.
I think what Prins et al (2001) may be referring to is not baseline sense-of-control (although it's not fully clear to me), which is different to what was found in this current study.
If one looks at Table 1 in
one sees how sense of control improved with CBT. That's what one would expect to happen. Indeed it was the only one of the three theoretical factors that was significant:
If a treatment is supposed to work by improving sense of control, baseline measurements should matter too much because CBT should be able to improve low scores. And as you say, it might be likely that one could improve lower scores more than higher ones (although it might depend if there are ceiling effects - if no ceiling effects, and plenty of scope for everyone to improve, one might not be sure how things would go).
Criteria - severely fatigued but could handle 5 hour of therapy daily. How is
that severe ?
I couldn't have tolerated this even in the beginning of my cfs much less now.
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