The process of CBT for CFS: Which changes in perpetuating cognitions and behaviour are related to a reduction in fatigue?, 2013, Knoop et al.

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bobbler

Senior Member (Voting Rights)
Copied from ReCOVer: A RCT testing the efficacy of CBT for preventing chronic post-infectious fatigue among patients diagnosed with COVID-19.

FMMM1 said:
I haven't read the above so this is speculation---

[Knoop] "The actometer is only used to monitor patients prior to treatment divide into an active group and a less active group."
Incredible seems reasonable. Actimetry is OK to select participants, but it's not OK to measure the outcome --- seems illogical.

Surely the more obvious answer is Knoop doesn't use actimetry, as an outcome indicator, because it indicates the intervention doesn't work. As others have pointed out on this site, these folks [Knoop, Garner ---] know their interventions work, so the actimetry measurements must be unreliable - since it doesn't confirm improvement!

These folks shouldn't receive a cent of public [taxpayers] money for their shoddy work. This crap should be relegated to nonsense individuals are free to believe/not believe but have no place in public decisions - like publicly funded health care.
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You are probably much more on the money that I am. My mind initially went to even more cynical assumptions. Goodness knows why they need a less and more active group if they aren't going to measure their level of activity at any point other than the start. I wonder if he's spotted something useful in the past as the reason for his quite specific but unusual 'approach'. I noticed this KNoop paper was a reference in the Jul 2021 Chalder was part of: https://www.sciencedirect.com/science/article/pii/S0022399913002663?via=ihub#s0075

You'll have to tell me if I can screenshot just the 2 graphs in results section that happen, weirdly to be sat side-by-side: Perceived activity and Objective activity (actimeter). I just find this presentation astounding. They've broken people down into 4 groups POST-HOC (my next point) based on whether they were 'fast responders>non-responders' on 'the fatigue scale'. Anyway, the non-responders' perceived activity almost reflects their objective activity. The responders' perceived keeps going up whilst their actual follows a similar level to non-responders.

Strangely (having framed these results quite differently in their description) the results ends with a Q of asking patients what aspect they had found most helpful, and note that after 'changing sleep hours' (72%), the next most cited was 'increasing physical activity' (65%). But they made it v clear that despite including some reporting on it, for some reason actual activity was NOT a 'process variable'

There is the following classic: "Lower pre-treatment objective activity predicted lower fatigue at the first interim measurement. This finding is difficult to explain. Levels of objective activity during treatment were not related to subsequent levels of fatigue at other measurements. In the early phases of treatment, even patients who remain severely fatigued after treatment increase their level of physical activity (see Fig. 3). So an increase in physical activity per se does not seem sufficient to reduce fatigue. An increase in perceived activity, however, does seem important." Then all sorts of confusing pseudophilosophy...

Anyway there seems to be all sorts of strange things going on with post-hoc groupings by fatigue level and claims that those who refused to participate were worse at the end than those who did (rather than a control) despite there only being 291 people whittled down to 183 'results' they were working with by that point. They had the pre-activity level and indeed put the low-activity (non boom-bust) straight onto exercise without 'balancing sessions' first, so these were a pre-hoc variable. How can people call things 'research' or 'experiment' when it feels like if you throw enough 'process variables' at a wall then analyse with different framings and you might make something out of it.

Watching someone create groups of 40 to call them 'responders' based on perceived fatigue at measuring point 1,2, 3 [not any independent variable of the treatment itself or individuals within it] and do cross-comparisons to other similar (probably internally consistent if we went through all their papers) dependent variables, as if that is meaningful of the TREATMENT is just another level. It starts to make you feel that this group really think that 'the fatigue scale' is an objective measure. More so than an actimeter. Which is kind of what their pseudophil discussion suggests.

Despite the following being in the treatment protocol: "They are encouraged to perceive feelings of fatigue as a normal part of an active and healthy life and stop labelling themselves as a CFS patient."

The whole thing is weird and I've started to get the feel when responding o some of these papers recently that BPS weren't/aren't really fighting for anything other than the scam of getting a methodology where nothing you test can fail. The competitive advantage of being allowed to make up their own foolproof methodology sans regs vs any other science area (cheap fast research as no Blinded Controls, that counts anything towards level of significance whilst science has to begin with subtracting the placebo/control response, so 'double-win'). Grow the kingdom, then tail wags dog because that dept is the only place with space so more get sent there, rhetoric gets repeated to justify it and so on..

Given methodology/design/quality/validity is/should be somewhat universal and the end result is sucking funding for research and then resources slowly out of other parts of medicine (and scientific psychology) I'm shocked that instead of sitting on their own forums taking the mick out of patients they aren't waking up to this uneven playing field. And how it will affect them, and if they don't demand parity the right way - will it end up spilling into other parts (seems like it is with talk of 'less rigid' etc), death of science and quality etc being respected?

It's become silly/weird where a cheap B12 injection can give one person immediately visible differences - to anyone's eyes - and all sorts of objective measures for x time people see with their own eyes works for some and don't harm others but it needs a heterogenous trial. And yet for expensive treatments paper surveys done by beneficiaries themselves on subjective meaningless measures with high drop-outs not explained, hidden raw data and objective outcomes and all sort of 'whittling and post-hoc can overspeak people coming out of it in a wheelchair and requires no yellow card reporting. And we let those doing the latter claim 'placebo' on the first when patient also self-reports feeling better.
 
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Abstract
Objective
Cognitive behaviour therapy (CBT) can significantly reduce fatigue in chronic fatigue syndrome (CFS), but little is known about the process of change taking place during CBT. Based on a recent treatment model (Wiborg et al. J Psych Res 2012), we examined how (changes in) cognitions and behaviour are related to the decrease in fatigue.

Methods
We included 183 patients meeting the US Centers for Disease Control criteria for CFS, aged 18 to 65 years, starting CBT. We measured fatigue and possible process variables before treatment; after 6, 12 and 18 weeks; and after treatment. Possible process variables were sense of control over fatigue, focusing on symptoms, self-reported physical functioning, perceived physical activity and objective (actigraphic) physical activity. We built multiple regression models, explaining levels of fatigue during therapy by (changes in) proposed process variables.

Results
We observed large individual variation in the patterns of change in fatigue and process variables during CBT for CFS. Increases in the sense of control over fatigue, perceived activity and self-reported physical functioning, and decreases in focusing on symptoms explained 20 to 46% of the variance in fatigue. An increase in objective activity was not a process variable.

Conclusion
A change in cognitive factors seems to be related to the decrease in fatigue during CBT for CFS. The pattern of change varies considerably between patients, but changes in process variables and fatigue occur mostly in the same period.
 
Yet the only thing patients are interested in is an increase in objective activity. Fatigue is only a problem when it stops you doing things. The two things are intertwined.

All the other things we wish would stop they just ignore so we do not know what effect there is on pain or vison or digestion.
 
bobbler said:
You'll have to tell me if I can screenshot just the 2 graphs in results section that happen, weirdly to be sat side-by-side: Perceived activity and Objective activity (actimeter). I just find this presentation astounding. They've broken people down into 4 groups POST-HOC (my next point) based on whether they were 'fast responders>non-responders' on 'the fatigue scale'. Anyway, the non-responders' perceived activity almost reflects their objective activity. The responders' perceived keeps going up whilst their actual follows a similar level to non-responders.
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Yes, that is quite a result. So, the 'fast responders' thought they were doing increasing amounts of activity after treatment, but actually they were doing pretty much the same amount of activity throughout.

Which is why we need actimeters to be used in these sorts of trials.
 
Just in case you were wondering what the scales in the two charts mean, here's the detail from the paper. Note, for the Objective Activity, that the chart has a truncated y axis - the oldest trick in the book to make non-significant differences look more different. Only baseline levels of Objective Activity were reported to the participants, at other times the participants did not know their Objective Activity measurement.

For the Perceived Activity, the y values are from a 3 question questionnaire.


"Objective activity

Objective activity was measured using an actometer, a motion sensing device developed at the Radboud University, worn around the ankle [29]. The mean number of accelerations was calculated automatically every 5 min, based on which a mean daily activity score was calculated. Activity was registered during 12 days both before and after treatment. During treatment, objective activity was registered during 4 complete days to limit the burden for participants. At the end of the measurement period data were visually checked by a research assistant to ensure that the device had worked properly and to check compliance. Days on which the device was worn for less than 22 h were excluded. Patients did not receive feedback on their activity level during the measurements, but they were told their activity level after the baseline measurement."

"Perceived physical activity
Perceived physical activity was measured with an adapted version of the subscale physical activity of the Checklist Individual Strength [22]. This subscale indicates the perceived level of physical activity in the previous two weeks, measured with three items (I am physically very active (reverse scoring); I am physically not very active; My level of physical activity is low). These items are measured on a seven-point scale ranging from ‘Yes, that is true’ to ‘No, that is not true’. Scores range from 3 to 21, with higher scores indicating a lower level of physical activity. The mean (SD) of the subscale in 915 untreated CFS patients was 18.0 (4.24) and Cronbach's alpha was .81."
 
For the final outcome point (post) there also appears to be an inverse correlation in the ranking of the fast, mid, and slow groups, when comparing perceived and objective outcomes. The more benefit perceived, the less shown objectively.

This is measuring the capacity to be manipulated into distorted thinking, not out of it.

The group that is most consistent and accurate is the non-responders.
 
Hutan said:
Just in case you were wondering what the scales in the two charts mean, here's the detail from the paper. Note, for the Objective Activity, that the chart has a truncated y axis - the oldest trick in the book to make non-significant differences look more different. Only baseline levels of Objective Activity were reported to the participants, at other times the participants did not know their Objective Activity measurement.

For the Perceived Activity, the y values are from a 3 question questionnaire.


"Objective activity

Objective activity was measured using an actometer, a motion sensing device developed at the Radboud University, worn around the ankle [29]. The mean number of accelerations was calculated automatically every 5 min, based on which a mean daily activity score was calculated. Activity was registered during 12 days both before and after treatment. During treatment, objective activity was registered during 4 complete days to limit the burden for participants. At the end of the measurement period data were visually checked by a research assistant to ensure that the device had worked properly and to check compliance. Days on which the device was worn for less than 22 h were excluded. Patients did not receive feedback on their activity level during the measurements, but they were told their activity level after the baseline measurement."

"Perceived physical activity
Perceived physical activity was measured with an adapted version of the subscale physical activity of the Checklist Individual Strength [22]. This subscale indicates the perceived level of physical activity in the previous two weeks, measured with three items (I am physically very active (reverse scoring); I am physically not very active; My level of physical activity is low). These items are measured on a seven-point scale ranging from ‘Yes, that is true’ to ‘No, that is not true’. Scores range from 3 to 21, with higher scores indicating a lower level of physical activity. The mean (SD) of the subscale in 915 untreated CFS patients was 18.0 (4.24) and Cronbach's alpha was .81."
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It's also worth noting (as relates back to Knoop's current proposed research) that Fukada criteria were used for CFS and they seemed to be new referrals betwen 2008-10 to a centre. They used the following definitions for 'low active' and 'high active':

"Two groups of patients are discerned: Relatively active patients characterised by bursts of activity followed by prolonged periods of rest, and low active patients, who score below the mean of CFS patients on at least 90% of the days during actigraphic measurement [29]. Low active patients start with a graded activity programme immediately after the initial cognitive interventions. Relatively active patients first spread their activities more evenly across the day, after which they start the graded activity programme."

then later on:
"Another question to be answered by future studies is the role of physical activity in subgroups of patients. A gradual increase in objective activity does not mediate the treatment effect of CBT for CFS [16], but some extremely high active patients may experience less fatigue by reducing activity and an increase in physical activity may be necessary in some extremely low active patients."

I think this is relevant because in his discussion he noted that the 'low active' saw the greatest reduction in 'fatigue'. When they used regression on 'difference in fatigue scores from one measuring point to the next' in order to divide into groups used in the graph (fast responders >non-responders) I can only assume that this would mean the 'fast responders' in the general (or both fast and medium, depending on how many 'low active' vs 'high active' they had).I find it highly frustrating that the numbers who were low or high active has been hidden and the calculations feel like the old 'which cup is the ball under' magic trick in being certain of this.

The big Q I have is: what do we think the initially separated of 'high active' group were - because that sounds like classic boom-bust. And more importantly what does the 'low active' group include? Is this the classic depression/other illnesses, or could his description stretch as far as some of the more severely ill with ME people? The fact that rather than just take the pre-assessment by actimeter he then performed regression analyses to 'tidy-up' that group based on 'fatigue scale' would have very much benefitted from his then in an ideal world describing exactly the characteristics of who was in that fast-responders group.

Anyway, the more I look at the objective activity graph the more I feel it probably describes the lives of me and those I know with the condition whenever you try and do something new. Try, try, try and realise that you can't beat the illness. They just need to add a longitudinal onto it.

Because if he is so convinced that his 'perceived activity' or 'perceived fatigue' is the forerunner to actually being able to do more ie it's cart-before-horse then you'd think the 'experiment' would be all measured my actigraphy + a much more detailed questionnaire of activity you actually did (ie inc congitive work if people went back to the workplace) over a longer time period. After all - why wouldn't you want to see all these 'wonderful effects he predicts' come to fruition by not measuring the time period he thinks they will occur?

I'm going to one day look at the ' Checklist Individual Strength (CIS)' - the fatigue scale used for this' that they used 'an increase in' to define the groups and then cross-compared with 'perceived activity' (as well as the other measures they used) because I'm sure there is almost certainly some overlap in the Qs defining 'perceived activity' with the type of Qs I've read in the Chalder Fatigue Questionnaire (another commonly used fatigue scale). So it would be ridiculous for there not to be a correlation - because it is almost like 'psychometric testing' of asking the same Qs slightly different ways?
 
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Sean said:
For the final outcome point (post) there also appears to be an inverse correlation in the ranking of the fast, mid, and slow groups, when comparing perceived and objective outcomes. The more benefit perceived, the less shown objectively.

This is measuring the capacity to be manipulated into distorted thinking, not out of it.

The group that is most consistent and accurate is the non-responders.
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indeed - it definitely needs objective measures, and it definitely needs much longer longitudinal measures - with drop-out rates from the start not being used as a 'control'.

My personal gut feelings from experience on where this one might head then anyone who 'got conned' and has ME will not only be affected physically potentially - but I'd also be intrigued to prove/see the psychological damage, how long it takes to unravel brainwashing to ignore your body signals and then once you've finally done that how damaging it is that you've had it done to you in the first place and wasted all those years. How people felt about what they'd been put through several years down the line.
 
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