Prediction of long-term outcome after cognitive behavioral therapy for chronic fatigue syndrome, 2019, Knoop et al

Andy

Retired committee member
Highlights
  • At follow-up fatigue severity was increased and physical functioning decreased compared to directly post CBT for CFS.
  • Fatigue severity and physical functioning at follow-up are predicted by the respective outcomes at post-treatment.
  • CFS symptom duration and negative appraisal of fatigue are additional predictors of relapse of severe fatigue.
  • Pain severity, self-efficacy with respect to fatigue and age are additional predictors of physical functioning.
Abstract
Objective
To determine which variables predicted long-term outcome after cognitive behavioral therapy (CBT) for chronic fatigue syndrome (CFS).

Methods
A cohort of 511 CFS patients from four different CBT for CFS studies, i.e. two cohort studies and two RCT's. Before treatment, all patients fulfilled the 2003 US CDC criteria for CFS and treated with CBT, were assessed at long-term follow-up, up to 10 years after end of treatment. We tried to predict fatigue severity and physical functioning at follow-up with demographics, cognitive-behavioral perpetuating factors, and CFS characteristics as predictors in linear regression analyses. Logistic regression analysis was used to explore significant predictors of fatigue scores within normal limits at long-term follow-up.

Results
Lower fatigue severity at long-term follow-up was predicted by a shorter duration of CFS symptoms and lower fatigue levels at baseline, and lower frustration in response to fatigue and lower fatigue levels directly post-treatment. Fatigue scores within normal limits at follow-up was predicted by lower fatigue severity and lower levels of frustration in response to fatigue, both assessed directly post-treatment. Better physical functioning at follow-up was predicted by higher sense of control over fatigue, better physical functioning at post-treatment, and being younger at baseline. In some of the additional analysis pain at baseline also predicted physical functioning at follow-up.

Conclusion
The finding that lower fatigue severity and higher physical functioning at long-term follow-up were positively associated with its outcomes at post-treatment underline the importance of fully maximizing the positive effects of CBT for the sustainment of outcomes. Furthermore, augmenting sense of control and starting treatment sooner after diagnosing CFS could positively influence long-term outcome. Interventions aimed at pain management deserve more attention in research.
Paywall, https://www.sciencedirect.com/science/article/pii/S0022399918307244?via=ihub
Sci Hub, https://sci-hub.se/10.1016/j.jpsychores.2019.03.017
 
They really don't understand anything, and have a worldview that consistently puts effect before cause.

A lot of these people should not be allowed around other people, apart from, possibly, as entertainment.

They certainly should not be in positions of influence.

The possibility that someone with greater limitations might be more frustrated than someone with lesser limitations simply doesn't appear to occur to them, so 'treating' the frustration seems like a valid approach to reducing disability.

I keep seeing this.

They are, literally IMO, totally unsane.
 
It seems to say nothing that's unexpected or inconsistent with a purely organic cause of CFS.

eg. those in the mild fatigue category are more likely to also be in that category at follow-up. In other words, those who are mildly fatigued are mildly fatigued. Those with shorter illness duration have better chances to improve over time... of course the cases that are not as chronically ill are less likely to be chronically ill.
 
This study seems to me to be pretty revealing of the mindset of the authors (which we knew already).

The cognitive-behavioral model of CFS assumes fatigue is perpetuated by fatigue-related behavior and beliefs [4]. Cognitive behavioral therapy (CBT) for CFS aimed at changing these perpetuating factors leads to a reduction of fatigue severity and functional impairment directly following treatment

They seem particularly keen on getting patients to perceive things differently. Not surprising then that those they manage to brainwash them to fill in questionnaires using positive words about fatigue also fill in questionnaires saying their fatigue has improved.

Perception of fatigue. The perception of fatigue was evaluated with the Fatigue Quality List (FQL) [28]. Several adjectives can be selected when it fits patients' experience and are being transposed into a percentage. CFS patients scored significantly higher on the subscale ‘Frustrating’, ‘Exhausting’ and ‘Frightening’ and lower on ‘Pleasant’ when compared to other fatigued and non-fatigued patient groups [28]. Following successful CBT, the perception of fatigue normalizes. The subscales ‘Pleasant’ and ‘Frustrating’ were used.
my bolding

Similarly by persuading people to interpret their fatigue as 'normal' they get better results.

Clinically, the finding of frustration as a negative predictor of fatigue severity at LTFU stimulates individual analysis that may reveal negative emotionally loaded associations of fatigue, learned during the period patients suffered from severe fatigue. When emotionally loaded associations are activated with the experience of ‘normal everyday’ fatigue following successful CBT, it may increase chances to relapse. This would imply that treatment strategies to reduce the negative emotional associations with fatigue may result in better long-term outcomes
my bolding.

And the 'sense of control' over physical functioning predicts better physical functioning. Again this is interpreted as success, when it may simply be that those with better physical functioning do actually have more control over it, and brainwashing people with poor physical functioning to believe that their symptoms are caused by wrong beliefs over which they should have better control will get them filling in SF-36 differently too.

In line with our hypothesis about the cognitive-behavioral perpetuating factors, a higher sense of control over fatigue at post-treatment predicted better physical functioning at LTFU. This was irrespective of fatigue severity at post-treatment. A previous study also found an increased sense of control over fatigue to be related to improvements in physical functioning [46]. This finding can perhaps be explained by assuming that a higher sense of control with respect to physical symptoms generalizes to self-efficacy with respect to resuming activities and overcoming physical limitations. In fact, this is in line with the aim of CBT to teach patients to become gradually more active, irrespective of fatigue levels. The increased sense of control with respect to symptoms also helps to maintain the improvements in physical functioning over time. A lower sense of control over fatigue increases the risk for a deterioration of physical functioning. This underlines the importance of fully maximizing the positive effects of treatment on physical functioning and sense of control over fatigue. For this, regular assessment of both during treatment is needed.
my bolding

And of course, there was no control group, so the whole thing is a fantasy.

With prediction research, no firm conclusions can be drawn about causality as we could not compare outcomes with those of a non-treated control group.

To me the whole thing is a clear admission that CBT is a big con. An exercise in brainwashing patients to fill in questionnaires differently.
 
They really don't understand anything, and have a worldview that consistently puts effect before cause.

A lot of these people should not be allowed around other people, apart from, possibly, as entertainment.

They certainly should not be in positions of influence.

The possibility that someone with greater limitations might be more frustrated than someone with lesser limitations simply doesn't appear to occur to them, so 'treating' the frustration seems like a valid approach to reducing disability.

I keep seeing this.

They are, literally IMO, totally unsane.
Couldnt agree more.

I only read the abstract not wasting my energy on the rest. I just find it utterly astonishing that dozens & dozens of studies into the breathtakingly obvious keep getting passed off as scientific research.

People whose symptoms were more severe at baseline were more severe at follow up

People who have worse symptoms (& therefore more limitations & suffering) were more frustrated

People who had less severe symptoms felt like they had more control & had better outcomes at follow up.

Well knock me over with a feather! .... all completely natural healthy reactions & outcomes that would be obvious & predictable to a 10yr old.

How the hell do they turn that into the idea that frustration & a sense of lack of control produces worse symptoms & should be viewed as a target for treatment gaslighting.
It really is the most spectacular stupidity.

It's just egregious that people are repeatedly being paid to produce this bilge when research funds are so paltry.
 
Am I reading this correctly that Knoop is arguing that illness severity is a predictor of illness severity? The language is very confusing and confused. I'm reading words and they make some grammatical sense but they form no coherent meaning.

Seems like "self-efficacy" is the shiny new toy. I wonder how long it will stay in fashion. 6 months?
 
The cognitive-behavioral model of CFS assumes fatigue is perpetuated by fatigue-related behavior and beliefs
WTH are "fatigue-related behavior and beliefs"?

This is just stringing words together without concern for any sense they may or may not make.

When emotionally loaded associations are activated with the experience of ‘normal everyday’ fatigue following successful CBT, it may increase chances to relapse.
Complete argle-bargle.
 
WTH are "fatigue-related behavior and beliefs"?

This is just stringing words together without concern for any sense they may or may not make.
I'd suggest they mean things like no more 10k runs today, as my legs feeling unable e to support me before hand makes attempting a 10k run a bad idea.

And then not running 10k.

That sort of "fatigue related behaviour and beliefs"

What they probably don't mean, and can't grasp, is that in reality it means not having a cuppa coz I don't have the grip strength ot hold a cup without spilling it. So waiting until I do. It means not going to the toilet when the urge first presents itself coz moving is so 'unpleasant', let alone standing, walking to the toilet.

That sort of thing.
 
WTH are "fatigue-related behavior and beliefs"?

I imagine they mean resting - ie treating one's fatigue as if it were as real as it feels, rather than merely a perception problem. On the IBS study discussed here recently they talk about behaviour as 'rushing to the toilet when one gets the urge' (rather than simply ignoring it & then crapping your pants), so no doubt the kind of thing they mean for fatigue-related behaviour would be saying (as one crawls across the floor vomitting with the effort) " i dont think i will manage to go out today I need to rest", rather than slurring out 'i feel great! this is just my body lying to me, if i pause here for 20 seconds & then jump up, I can likely go horse riding this afternoon'

sorry. I'm being facetious which isn't very helpful, i am just really losing patience with this drivel.
 
I imagine they mean resting - ie treating one's fatigue as if it were as real as it feels, rather than merely a perception problem. On the IBS study discussed here recently they talk about behaviour as 'rushing to the toilet when one gets the urge' (rather than simply ignoring it & then crapping your pants), so no doubt the kind of thing they mean for fatigue-related behaviour would be saying (as one crawls across the floor vomitting with the effort) " i dont think i will manage to go out today I need to rest", rather than slurring out 'i feel great! this is just my body lying to me, if i pause here for 20 seconds & then jump up, I can likely go horse riding this afternoon'

sorry. I'm being facetious which isn't very helpful, i am just really losing patience with this drivel.
It's the obfuscated language that angers me. They know they can't say what they mean and simply come up with twisted language, to the point of barely making sense, to avoid saying something that has no basis in evidence.

A common complaint about the difficult of diagnosing ME is that the symptoms are "vague". This is 100x more vague and confused, which only shows that the complaint about vagueness is deceitful. They don't care about vagueness, they embrace it because clear language gives away the nonsensical nature of their rhetoric.
 
Yes, I agree - more nonsense poems.

Some in psychology and medicine seem to view completely logical reactions as illogical. For example, in an anxiety creating situation, say awaking from surgery with someone urgently yelling right in your face, asking rapid fire questions, because something has gone wrong during surgery, one may seem anxious in this confusing situation. However, medical staff find it odd that anyone would feel anxious in such a situation.

And, why would anyone be frustrated because they have a horrible, stigmatized, untreated, disease that has gutted their life? "How strange and inappropriate a reaction?"
 
This study seems to me to be pretty revealing of the mindset of the authors (which we knew already).



And of course, there was no control group, so the whole thing is a fantasy.

To me the whole thing is a clear admission that CBT is a big con. An exercise in brainwashing patients to fill in questionnaires differently.

These psych/psychiatry folk are a cult. I am silently wishing some ME cases among them. Try drinking your own CBT koolaid then, why don't you?

Same thing happening w/pain patients.
 
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WTH are "fatigue-related behavior and beliefs"?

This is just stringing words together without concern for any sense they may or may not make.


Complete argle-bargle.

Fatigue behaviors, I imagine, are actions that signal to the psych cult that you are fatigued. Your position, lying on the couch, not moving, whatever.

I know the term pain behaviors because I have pain and pay attention to the psych garbage (though it's traumatic and I'm stopping it). And it's grimacing, making a noise because of the pain.

so, for some reason, CBT & assorted psych cults are focused on irradicating these behaviors because they are social signals (even if you groan and no one is there but you?) Their theory is if you reduce these behaviors, then X will happen (less pain? more social life?)

Pretty soon CBT will talk about fatigue catastrophizing, if they don't already.
 
To add to "fatigue behaviors." Looked at PubMed and couldn't find anything for chronic fatigue syndrome and fatigue behaviors.

Pain behaviors had papers in the 1990s, so I think that concept is old hat. Someone's seen the need for a revival. Must be pretty desperate (or stupid).
 
To add to "fatigue behaviors." Looked at PubMed and couldn't find anything for chronic fatigue syndrome and fatigue behaviors.

Pain behaviors had papers in the 1990s, so I think that concept is old hat. Someone's seen the need for a revival. Must be pretty desperate (or stupid).

And further: pain behaviors concept comes from operant conditioning, a la BF Skinner. That if you extinguish these pain (or fatigue) behaviors (which includes talking about pain or fatigue, by the way), then you are going to have less pain or fatigue due to operant conditioning.

What a disaster. As though the 60s never happened. Where is the sanctity of the individual in all this operant nonsense. I give up.
 
This study seems to me to be pretty revealing of the mindset of the authors (which we knew already).



They seem particularly keen on getting patients to perceive things differently. Not surprising then that those they manage to brainwash them to fill in questionnaires using positive words about fatigue also fill in questionnaires saying their fatigue has improved.


my bolding

Similarly by persuading people to interpret their fatigue as 'normal' they get better results.


my bolding.

And the 'sense of control' over physical functioning predicts better physical functioning. Again this is interpreted as success, when it may simply be that those with better physical functioning do actually have more control over it, and brainwashing people with poor physical functioning to believe that their symptoms are caused by wrong beliefs over which they should have better control will get them filling in SF-36 differently too.


my bolding

And of course, there was no control group, so the whole thing is a fantasy.



To me the whole thing is a clear admission that CBT is a big con. An exercise in brainwashing patients to fill in questionnaires differently.
I just looked at this thread on another device & so wasnt signed in - had to scroll down - & just noticed your post @Trish I must have cross posted with you. LOL you made all the points much more eloquently & reasonably than me, haha i neednt have bothered :D
 
In a way, this is quite an interesting study because they had a lot of data on a lot of patients over a long period of time. They measured outcomes at baseline, after CBT-treatment, and at long-term follow-up.

What is remarkable to me is how many factors were not predictive of fatigue and physical function at follow-up. Take for example fatigue severity. The hierarchical linear regression (table 3) showed that having a paid job, depression, receiving disablement insurance benefits and the number of CDC symptoms, all were not significantly correlated with fatigue severity at follow-up. This is not what I expected.

The same was true for objective and subjective measurement of activity levels post-treatment and for fulfilling SEID-criteria (they did not assess orthostatic intolerance though). It would be interesting to know whether actigraphy at baseline was correlated with long-term fatigue severity. If not, that might question the focus on activity levels in the current form of CBT. It would also be interesting to know whether the symptom of PEM without other SEID requirements was related to fatigue severity at follow-up. I suppose that the researchers have data to answer both of these questions.
 
What is remarkable to me is how many factors were not predictive of fatigue and physical function at follow-up. Take for example fatigue severity. The hierarchical linear regression (table 3) showed that having a paid job, depression, receiving disablement insurance benefits and the number of CDC symptoms, all were not significantly correlated with fatigue severity at follow-up. This is not what I expected.

It's late and I'm not sure I can follow, but I would have thought that having more symptoms (number of CDC symptoms) would be associated with worse prognosis because it reflects illness severity. Other than that these results seem to be in line with an etiology that is not related to psychosocial factors. Confidence, positivity and feeling in control will not change the course of the illness. Ironically they might begin to matter once real treatment exists because they could influence how well patients follow the treatment.
 
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