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

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.

 

In 2003 there was an International Chronic Fatigue Syndrome Study Group that specified how the Fukuda-case definition should be operationalized. I think this is what they are referring to. See: https://bmchealthservres.biomedcentral.com/track/pdf/10.1186/1472-6963-3-25

 

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?

 

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.

 

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.

 

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?"

 

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.

 

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).

 

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.

 

Placebo response not sustained upon removal of placebo. Shocked, shocked, I tell you.

 

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

 

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.

 

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.