The central role of cognitive processes in the perpetuation of chronic fatigue syndrome Knoop: 2010

[lansbergen]

http://www.jpsychores.com/article/PIIS0022399910000632

The central role of cognitive processes in the perpetuation of chronic fatigue syndrome ☆

• Hans Knoopa,
• Judith B. Prinsb,
• Rona Moss-Morrisc,
• Gijs Bleijenbergd

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Abstract

Objective
Chronic fatigue syndrome (CFS) is considered to be one of the functional somatic syndromes (FSS). Cognitions and behavior are thought to perpetuate the symptoms of CFS. Behavioral interventions based on the existing models of perpetuating factors are quite successful in reducing fatigue and disabilities. The evidence is reviewed that cognitive processes, particularly those that determine the perception of fatigue and its effect on behavior, play a central role in the maintenance of symptoms.

Method
Narrative review.

Results
Findings from treatment studies suggest that cognitive factors mediate the positive effect of behavioral interventions on fatigue. Increased fitness or increased physical activity does not seem to mediate the treatment response. Additional evidence for the role of cognitive processes is found in studies comparing the subjective beliefs patients have of their functioning with their actual performance and in neurobiological research.

Conclusion
Three different cognitive processes may play a role in the perpetuation of CFS symptoms. The first is a general cognitive representation in which fatigue is perceived as something negative and aversive and CFS is seen as an illness that is difficult to influence. The second process involved is the focusing on fatigue. The third element is formed by specific dysfunctional beliefs about activity and fatigue.

Keywords

• Chronic fatigue syndrome;
• Functional somatic syndromes;
• Perpetuating factors;
• Treatment studies;
• Cognitive processes;
• Perception

a Expert Centre Chronic Fatigue, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands

b Department of Medical Psychology, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands

c School of Psychology, University of Southampton, Southampton, United Kingdom

d Expert Centre Chronic Fatigue, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands

Corresponding Author InformationCorresponding author. Expert Centre Chronic Fatigue, Radboud University Nijmegen Medical Centre, Postbox 9011 , 6500 HB Nijmegen, The Netherlands. Tel.: +31 24 3610042; fax: +31 24 3610041.

☆ This article was written while the first author was a visiting staff member of the School of Psychology at the University of Southampton. The working visit was made possible by a grant of the Dutch MSresearch fund (Stichting MSresearch).

 

[lansbergen]

http://www.ziezon.nl/uploadedFiles/147.pdf

Long-term efficacy of cognitivebehavioral therapy by general
practitioners for fatigue: A 4-year follow-up study

Stephanie S. Leone a, Marcus J.H. Huibers b, IJmert Kant a, Ludovic G.P.M. van Amelsvoort a, Constant P. van Schayckc , Gijs Bleijenbergd, J. Andre Knottnerus c

a Department of Epidemiology, Maastricht University, Maastricht, The Netherlands
b Department of Medical, Clinical, and Experimental Psychology, Maastricht University, Maastricht, The Netherlands
c Department of General Practice, Maastricht University, Maastricht, The Netherlands
d Radboud University Nijmegen Medical Centre, Expert Centre Chronic Fatigue, Nijmegen, The Netherlands

Received 16 November 2005; received in revised form 11 April 2006; accepted 25 April 2006

Abstract

Objective: In an earlier study, we found that cognitive behavioral therapy (CBT) delivered by general practitioners (GPs) for fatigue among employees on sick leave was not effective after 12 months. In this study we aim to assess the long-term efficacy of CBT by GPs for fatigue. It was hypothesized that the intervention could prevent deterioration as well as relapse of fatigue complaints and relapse into absenteeism in the long term. Methods: Patients who participated in the original randomized controlled trial were followed up 4 years later. Fatigue and absenteeism were the main outcomes. Results: Fatigue and absenteeism were high in the intervention and control groups at the 4-year follow-up. There was no significant difference between the intervention group and the control group on fatigue and absenteeism. The intervention group however tended toward less-favorable outcomes as compared with the control group. Conclusions: Like that of chronic fatigue syndrome, the prognosis of less-advanced fatigue is rather poor. CBT delivered by GPs is not effective in the long term.

D 2006 Elsevier Inc. All rights reserved.

 

[Dr. Yes]

From the first study:

Chronic fatigue syndrome (CFS) is considered to be one of the functional somatic syndromes (FSS).

By whom? A group of rogue psychiatrists?

It is not classified as such by the WHO nor, for that matter, in the DSM. So basically they decided to redefine a (physical) medical illness that already has its own classification the way THEY decided to, based on no scientific evidence, or even reasoning, whatsoever. And then based their study and conclusions on that made-up premise.

That pretty much sums up the state of psych lobby "science".

 

[dancer]

ARGH!!!! This is so maddening.
I was a ballet teacher/choreographer/dancer for twenty years. I LOVED the feeling of healthy fatigue... I didn't fear it or "perceive it to be negative." I loved exertion. Now I'm sick, and exertion (sometimes very little) makes me SICKER.

It does not make me "anxious" or "worried" about "feeling tired."

Dr. Yes, I also noticed that phrase "considered to be one of the functional somatic syndromes" and thought the same thing. Considered by whom? GRRR!

 

[Dolphin]

Behavioral interventions based on the existing models of perpetuating factors are quite successful in reducing fatigue and disabilities.

They ignore the fact that their own studies showed they didn't increase activity levels. They might decrease self-reported fatigue but the reduced disabilities they refer to again is self-reported so is disputable. CBT programmes often involve a lot of rest periods so the bit of benefit patients get from them might be from the rest periods, better pacing of activities (even though this isn't necessarily the explicit aim) rather than the other means generally claimed.

 

[biophile]

Not only do they ignore the possible implications of their own research regarding activity levels, but they twist it to support the alleged role of "cognitive processes"/distortions. All they have done is influence subjective reports of fatigue by convincing patients they aren't really fatigued, and it does not seem to bother them that their patients are just as disabled as before (unless their cohort are "high functioning" patients who did not start out with much disability in the first place?). The irony of course is, remaining significantly disabled while believing you've recovered, sounds like a cognitive distortion in its own right, a disconnect from reality.

 

[biophile]

Maarten, I also noticed how just like the phrases "multi-disciplined" and "integrative approach", the word "multifactorial" is used differently by biomedical proponents and biopsychosocialists. The former group list several biological aspects and sometimes a psychological component. The latter group usually just list a bunch of different psychosocial, cognitive and behavioural attributes along with their "biological" consequences (eg deconditioning).

Nijmegen (Knoop et al) state "fatigue is perceived as something negative", "CFS is seen as an illness that is difficult to influence" and (dysfunctional) "beliefs about activity and fatigue" as if these are all unreasonable conclusions by patients. No mention whatsoever of any biological factors/components in the abstract. They do not appear to acknowledge or understand the existence of post-exertional symptom exacerbation either. I have little faith in the perspective of anyone who claims exertional symptoms are a "dysfunctional belief" or a merely consequence of misinterpreting ordinary signs of deconditioning. Even the questionable "chronic stress" model of CFS is more respectable than that.

Although Wessely is often seen as the pinnacle of the biopsychosocial approach, he may not necessary be the most hardcore proponent and there are plenty of others who would be willing to pick up the slack even if the entire UK school retired from CFS. We may be witnessing a split of biopsychosocial schools where some will become even more extremist about patient delusions while others will incorporate more biological factors.

 

[Esther12]

Just some notes/thoughts on this.
http://www.jpsychores.com/article/PIIS0022399910000632

The central role of cognitive processes in the perpetuation of chronic fatigue syndrome ☆

• Hans Knoopa,
• Judith B. Prinsb,
• Rona Moss-Morrisc,
• Gijs Bleijenbergd

Get rights and content
Abstract
Objective
Chronic fatigue syndrome (CFS) is considered to be one of the functional somatic syndromes (FSS). Cognitions and behavior are thought to perpetuate the symptoms of CFS. Behavioral interventions based on the existing models of perpetuating factors are quite successful in reducing fatigue and disabilities. The evidence is reviewed that cognitive processes, particularly those that determine the perception of fatigue and its effect on behavior, play a central role in the maintenance of symptoms.

Method
Narrative review.

Results
Findings from treatment studies suggest that cognitive factors mediate the positive effect of behavioral interventions on fatigue. Increased fitness or increased physical activity does not seem to mediate the treatment response. Additional evidence for the role of cognitive processes is found in studies comparing the subjective beliefs patients have of their functioning with their actual performance and in neurobiological research.

Conclusion
Three different cognitive processes may play a role in the perpetuation of CFS symptoms. The first is a general cognitive representation in which fatigue is perceived as something negative and aversive and CFS is seen as an illness that is difficult to influence. The second process involved is the focusing on fatigue. The third element is formed by specific dysfunctional beliefs about activity and fatigue.

Keywords

• Chronic fatigue syndrome;
• Functional somatic syndromes;
• Perpetuating factors;
• Treatment studies;
• Cognitive processes;
• Perception

So, although the cognitive behavioral models of CFS helped in understanding CFS, they lack in specificity and empirical foundation.

Yeah, thanks for that understanding. It was awesome.

I'm not sure if there's much difference between 'understanding' that lacks a good empirical foundation and quackery.

Systematic reviews report that both GET and CBT consistently lead to a significant decrease of fatigue and disabilities, although the effects of CBT seem somewhat larger [12] and [13]. There have been a few attempts to study the mechanisms of change in GET and CBT using mediation analysis. Testing mediation is a strategy to identify variables which intervene in the relationship between treatment and outcome. They help to better understand how treatment works [14] and in the case of CFS can help test which of the perpetuating factors is crucial in CFS.

The role of physical activity as a mediator of CBT has recently been examined [15]. Three randomized controlled trials, all showing a positive effect of CBT on fatigue and disability, were reanalyzed. Mediation analysis showed that an increase in physical activity did not mediate the positive effect of CBT. Patients could recover from CFS following CBT without a permanent increase in their levels of physical activity. This is a remarkable finding as the increase in physical activity, such as walking is an important element of the treatment. As CBT does not have a permanent effect on the activity level what could then be the mechanism of change in CBT? Our hypothesis is that having CFS patients (temporarily) increase their level of physical activity changes their cognitions and perception of fatigue. Through the feedback of steadily increasing activity levels they discover that despite being fatigued they can become more active. This may change cognitions about the negative effects of activity and increase self-efficacy. It also lessens the focus on fatigue and increases the focus on activity. In time, the negative connotation of fatigue, which is characteristic of CFS, will decrease and fatigue will again become a more normal sensation [16]. If the focus on fatigue lessens, the fatigue diminishes independent of the degree of physical activity increase. This might suggest that the tendency to focus on the fatigue, the negative perception of fatigue, and dysfunctional beliefs about one's own ability to be active are central to CFS. This is in accordance with some of the elements of the earlier described models [7].

Awww man. That 'finding' is remarkable. Great news people - we can 'recover' without getting any better!

This group also claimed that their CBT for cancer fatigue helped people by increasing their activity levels in the special time when activity levels were not being measured, as a way of avoiding the problem that their own data showed no increase in activity levels: http://forums.phoenixrising.me/inde...fatigue-cbt-actometers-bleijenberg-etc.24838/

Some support for this hypothesis comes from two other treatment studies. One showed that the reduction in fatigue following 12 weeks of GET was mediated by a decrease in focusing on symptoms rather than by an increase in fitness [17]. In this study, patients were instructed to exercise at a given heart rate which was selected on the basis of individuals' fitness levels. They were asked to wear a heart rate monitor when exercising and to use the data from the monitor rather than their bodily symptoms to determine how intensively they should exercise. This strategy may have helped to lessen the focus on fatigue and symptoms while being more active, leading to changes in the beliefs about the negative effects of fatigue on activity. A similar finding was reported in a second yet unpublished mediation study using data from an earlier CBT randomized controlled trial. In this study, the extent to which the reduction in fatigue was mediated by a change in coping strategies was examined. The reduction of fatigue was (partially) mediated by patients becoming less preoccupied with the fatigue and not by changes in behavioral coping strategies, i.e. decreases of avoidance of activity and retreating (Wiborg et al., unpublished data)

They're getting pretty close to saying 'our treatments are effective because of response bias affecting how patients report their symptoms' here. The fact is that there is evidence that patients with CFS do suffer from reduced levels of activity and fitness... if your treatments lead to them 'recovering', they need to be able to lead to increases in patients fitness and activity levels, in the same way that truly effective treatments would also lead to fewer patients claiming disability benefits or being unable to work.

CBT and GET can be used to manipulate how patients fill in questionnaires at the end of non-blinded trials - I guess that could be counted as reducing 'disability'.

An interesting study by Fry and Martin [33] on children with CFS found no differences in physical activity level measured with actigraphy between children with CFS and healthy controls. Nevertheless, CFS patients and their parents reported significantly reduced activity levels when compared to the healthy children and their parents.

I discussed the Fry and Martin paper here: http://forums.phoenixrising.me/inde...rental-expectations-of-their-childs-iq.22629/

They actually found that the actometers did report a difference in activity levels between those with CFS and those without, but that the actometers counted both groups as having spent more time being active than the groups did. It seemed to me quite possible that this indicated that the actometers had a different view as to what 'activity' was compared to the people being tested, rather than this being evidence of a cognitive distortion. (To me, the study seemed weak, and I would not feel comfortable claiming that it showed anything):

Table I.- Mean (SD) measures of activity (percentage of active
epochs), averaged over three days

CFS: Actometer 68.2% (8.0) of the day active. Child estimated: 38.6% (16.6) Parent estimated: 34.4 (16.1)
Healthy: Actometer 77.1% (9.7) of the day active. Child estimated: 56.4% (17.6) Parent estimated: 56.5 (10.1)

Neurobiological correlates of CFS and its relationship with perpetuating factors

Although until now no consistent somatic impairment has been found in CFS, a recent and promising line of research has looked at possible neurobiological abnormalities associated with CFS. The findings support the idea of the important role of cognitive processes in CFS. De Lange et al. [35] compared brain activity patterns in patients with CFS and those in healthy controls when they were performing the same tasks. They found that areas in the brain that play a role in evaluating the emotional and motivational consequences of making an error showed less activity during a mental imagery task in CFS patients, suggesting some kind of motivational impairment. This altered motivation could be interpreted as a response to the belief of being unable to perform. A recent study found that fatigue in CFS patients was accompanied by a cerebral activity pattern that suggested an exaggerated emotional response to fatigue [36]. This was interpreted by the authors as in line with the cognitive behavioral model of CFS, where beliefs that fatigue is threatening perpetuate the syndrome.

Ugh. They're just building on (neurobiological) sand. If they were comparing CFS patients to patients who suffered from chronic fatigue that was not a result of cognitive processes, maybe that would be interesting.

Discussion:
There is evidence of a disorder in cognitive processes in CFS. We hypothesize that three different cognitive processes play a crucial role in the perpetuation of CFS. The first is a general cognitive representation or schema of the illness that gets activated in a wide range of situations. In this representation fatigue is continuously perceived as something negative and aversive [17]. CFS is seen as an illness with a substantial impact on life that is difficult to influence [37]. This last concept can be compared with the idea of low self-efficacy in the model of Vercoulen et al. [8]. The second process involved is the tendency to attend to the fatigue and related symptoms. The third element is made up of specific beliefs about activity and fatigue. Patients underestimate their own performance and their ability to perform in the future. Both have a negative effect on their level of activity. Furthermore, fatigue is seen as something that reduces their ability to become active and perform.

Those loopy patients believing that 'fatigue' s something negative. How dysfunctional. How strange that some patients seem to see CFS as an illness with a substantial impact on life that is difficult to influence, when the evidence indicates that... hold on?!

Also, they've gone back to dysfunctional cognitive processes that have a negative affect upon levels of activity... but earlier they were busy explaining why their effective treatments can lead to 'recovery' without increasing activity levels. They were so convincing at the time.

What is their definition of 'fatigue' which means that it is not a negative thing that reduces people's ability to be active and perform?

We assumed that perception of fatigue as something negative is a cognitive process, but it has of course emotional connotations also.

I really thought that they were going to say 'but it has of course an important basis in truth'.

Two studies have shown that both patients' cognitive and behavioral responses to glandular fever symptoms are predictors of the onset of CFS 6 months after the initial acute infection ([43], Moss-Morris et al., unpublished data).

That unpublished study is presumably this one: http://forums.phoenixrising.me/inde...o-cfs-can-the-cbt-model-provide-the-map.5418/

At the time (when I'd not read much CFS research) I said:

It would be interesting to see if they did measure severity of initial onset too.

You'd have thought the the severity of initial illness would be strongly correlate with "perceiving GF to be a serious, distressing condition, that will last a long time and is uncontrollable".

I thought I'd also quote the Lloyd Hickie et al 2006 Post-infective and chronic fatigue syndromes:

The syndrome was predicted largely by the severity of the acute illness rather than by demographic, psychological, or microbiological factors.

With psychosocial CFS research, it keeps getting more and more ridiculous as you become aware of the papers that they cite to try to support their claims.

 

[A.B.]

Findings from treatment studies suggest that cognitive factors mediate the positive effect of behavioral interventions on fatigue. Increased fitness or increased physical activity does not seem to mediate the treatment response.

So what they're saying is their CBT placebo only works* when patients expect it to work. That's some outstanding discovery.

* works is defined as better rating on a fatigue questionnaire.

 

[heapsreal]

Makes one wonder if these psychobabblers read what they actually write because it all sounds like a big load of crap, really??

 

[SDSue]

Good grief. I'd love to see these people dismantled at a public debate. Put 'em up against the top researchers in the field and let them defend their argument against clinical findings such as PETs, 2 day CPET with genetic expression data, etc etc etc.

They are ruining lives by perpetuating lies and myths. I wonder if the blood-letters and trephiners of yore fought as hard for their job security when proven wrong.

I'll add them to my (lengthy) list of those who owe us a public apology.

 

[SilverbladeTE]

I'd rather see them sent to a bloody gulag, with a ball and chain tied to their testicles

 

[Sean]

This group also claimed that their CBT for cancer fatigue helped people by increasing their activity levels in the special time when activity levels were not being measured, as a way of avoiding the problem that their own data showed no increase in activity levels: http://forums.phoenixrising.me/inde...fatigue-cbt-actometers-bleijenberg-etc.24838/

He he he…

They really are tying themselves up in increasingly ludicrous and self-strangling cognitive knots to avoid facing the appalling truth about their precious pet theory, and its consequences for patients.

"It is difficult to get a man to understand something, when his salary depends upon his not understanding it!"

His salary, or power, status, ego, etc.

http://en.wikiquote.org/wiki/Upton_Sinclair

--------------

Silverblade, you are getting soft in your old age. I would attach a rabid doberman to the other end of the chain.

 

[chipmunk1]

what a load of horsecrap. They are more in need of treatment than we are. I almost feel sorry for them.


What's next the CBT cancer cure? If you die it's because you didn't want to live enough..

Furthermore, fatigue is seen as something that reduces their ability to become active and perform.

Oh what a genius insight. Who would have thought that? Do you need a Phd to draw such brilliant conclusions?

Fatigue is seen as something that reduces the ability to perform?

There is evidence of a disorder in cognitive processes in CFS.

Oh really, having a brain disease affects cognitive processes? Brilliant!

In this representation fatigue is continuously perceived as something negative and aversive

How come? We all should be fatigued. It's cool. Everyone should experience it.

Makes one wonder if these psychobabblers read what they actually write because it all sounds like a big load of crap, really??

Reading and comprehension is not the same thing.

I suspect they read (at least sometimes). I doubt they understand the nonsense they're writing.
At least i hope for them that they don't otherwise we would have to assume they are even more deranged than we thought.

 

[Aileen]

What's next the CBT cancer cure? If you die it's because you didn't want to live enough..

No silly, you aren't really dead, you just think you are!! And all your grieving friends and family? How about family group CBT to get rid of those "faulty death beliefs". Curing the world's problems are so simple.

Reading and comprehension is not the same thing.

I suspect they read (at least sometimes). I doubt they understand the nonsense they're writing.
At least i hope for them that they don't otherwise we would have to assume they are even more deranged than we thought.

Frightening how a bunch of patients with brain fog can think more clearly than these people!

 

[alex3619]

Were the psychobabblers right about tuberculosis?

Diabetes?

Multiple sclerosis?

Rheumatoid arthritis?

Lupus?

Gastric ulcers?

NO.

Yet somehow they are right about CFS, ME, FM, MCS, IBS ... the list goes on. Despite hard evidence they are wrong.

To diagnose a functional somatic disorder, though now this seems to be different under DSM-V, you need to have no physical cause that can explain the symptoms. Yet we have exactly that in ME and strictly defined CFS. So in a flash of reason and evidence yet another of their claims is shown to be wrong.


When have they ever been proven to be right? NEVER. They just claim it, again and again, ad nauseum.

Yet I got a comment translated from Danish on Co-Cure recently, here is one claim that cracks me up:

http://www.dagensmedicin.dk/opinion/debat/stig-gerdes-er-med-til-at-optrappe-konflikter/
http://translate.google.com/transla...stig-gerdes-er-med-til-at-optrappe-konflikter

SG claims that FFL has captive, forced detention and compulsory
treatment a real young woman. This is a story that flourish especially
in the social media, and in particular has enabled a group of American
'patient activists' who created an English-language Facebook group and
want to free the woman.

... and ...

If SG had set themselves a little better into things and not just
'scratched the surface', he would have learned that there is solid
evidence.

In addition to textbooks, we published in the American Journal of
Physicians in 2010, a status article in Danish, where SG can find the
documentation. Since 2010, there have been several new review articles
published in high-ranking journals such as JAMA and Lancet.

This is classic!

I have never seen so many logical fallacies and unsubstantiable claims made in one document since the PACE trial was first published. This will be in my book, should I ever get to write it, broken down and analyzed line by line.

You get the impression there are thousands of papers substantiating their claims. I mean, its published in major journals! It must be true! In other places I have seen comments to the effect that critics don't understand the literature, that thousands of papers support their positions.

I have one question for them: NAME ONE!?

If they are ever game to name one, then the fun begins ... I would be very interested to read one that is actually good science, and which is replicated independently, and has substantive objective evidence etc. In the meantime if they are game enough to name one, we can easily disprove their claim.

 

[Cheshire]

These are also worrying:

no patients are involuntarily committed, forced detention and compulsory treatment.

I would be pleased to have Karina's parents opinion about that statement...

I find it unethical that SG helps to spread directly untrue stories about a specific patient, and [...] without the consent of the patient

Ethical lessons given by Per Fink are priceless...

SG claims that American scientists are about to have found the cause of fibromyalgia, and it would be gratifying if that was the case, but I must be doubtful about this. As a research in the field, we follow the course of the literature review. Furthermore, there is currently a major study underway in the Board of Health on chronic widespread pain. I sit with the Working Group and we have not come across information that goes in the direction that SG specify.

What a great proof of denial!! No man is more blind than the man who refuses to see...

And the usual mourn: these bad patient activist (nearly terrorists) that are driving our poor patients in the wrong direction, patients are afraid of the stigma attached to mental illness (and not because CBT doesn't cure them)

 

[SilverbladeTE]

Alex
the fact is, if these scumbags had been born in a different country, they'd be cutting infant girls genitals off to keep them "pure for their own good"
Same crap.

 

[WillowJ]

Makes one wonder if these psychobabblers read what they actually write because it all sounds like a big load of crap, really??

Got to wonder if the publishing journals actually read the papers.

Really?

Patients could recover from CFS following CBT without a permanent increase in their levels of physical activity. ... Through the feedback of steadily increasing activity levels they discover that despite being fatigued they can become more active

And then even though they are "recovered" they revert to inactivity because.... um..... ?????
Broken model here.

 

[Snow Leopard]

The central role of double speak in publishing an opinion paper in the field of CFS...