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

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

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.

 

The process of cognitive behaviour therapy for chronic fatigue syndrome: Which changes in perpetuating cognitions and behaviour are related to a reduction in fatigue ?

https://www.sciencedirect.com/science/article/pii/S0022399913002663?via=ihub

 

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.

 

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?

 

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.

 

Yes, a remarkable piece of doublethink.
So presumably also a nice measure of the capacity of the investigators to manipulate themselves into distorted thinking too.