Cognitive and behavioural responses to symptoms in adolescents with CFS: A case-control study nested within a cohort, 2019, Loades et al

Andy

Retired committee member
Abstract
BACKGROUND::
What adolescents think about symptoms and what they do in response could contribute to fatigue maintenance. We compared the cognitive and behavioural responses of adolescents and their parents with chronic fatigue syndrome (CFS; N = 121) and asthma ( N = 27) and explored the predictive value of these variables on fatigue and functioning in CFS.

METHOD::
Consecutively referred adolescents with CFS were recruited. Questionnaires, completed by adolescents and parents, assessed fatigue, functioning, mood and cognitive and behavioural responses to symptoms. Age-matched adolescents with asthma completed the same questionnaires. Adolescents with CFS completed questionnaires again approximately 3 months later.

RESULTS::
Adolescents with CFS scored higher on all unhelpful cognitive and behavioural subscales than adolescents with asthma. Parents' cognitions about their child's symptoms were associated with adolescent's own cognitions. Unhelpful cognitive and behavioural responses, particularly, damage beliefs, predicted subsequent fatigue in CFS, and all-or-nothing behaviour, catastrophising and damage beliefs predicted subsequent physical functioning.

CONCLUSION::
Unhelpful cognitive and behavioural responses to symptoms appear to be particularly prominent in adolescents with CFS. There is some consistency but not a perfect match between cognitive and behavioural responses to symptoms reported by adolescents and their parents. These responses could be contributing to fatigue maintenance and disability.
Paywalled at https://journals.sagepub.com/doi/abs/10.1177/1359104519835583?journalCode=ccpa
Alt at https://sci-hub.se/https://journals.sagepub.com/doi/abs/10.1177/1359104519835583?journalCode=ccpa
 
The scant evidence that does exist in adolescents with CFS/myalgic encephalomyelitis (ME) indicates the potential importance of cognitive factors in illness maintenance. In a small but well-con-trolled study, children and adolescents with CFS worried more about their illness than juvenile arthritis patients or emotional disorder patients (Garralda & Rangel, 2004). In a large sample of children, ado-lescents and young adults with self-reported CFS recruited via a self-help website, illness perceptions (e.g. longer expected timeline and worse consequences of the illness) were associated with poor physi-cal functioning and poor quality of life (Gray & Rutter, 2007). In a qualitative study, adolescents with CFS talked about how beliefs about activity contributed to the exacerbation of their CFS symptoms; Loades et al. 3for example, participants reported that doing too much was unhelpful for managing their illness (Richards, Chaplin, Starkey, & Turk, 2006). Thus, the evidence points towards the importance of ill-ness beliefs in potentially exacerbating symptoms in adolescents with CFS. However, as these existing studies recruited self-selecting samples, and eligibility criteria did not necessarily include the full diag-nostic criteria for CFS, the generalisability of the findings is limi

That speaks volume. Kids saying "doing too much doesn't help" is translated in "beliefs about activity contribute to the exacerbation of their CFS symptoms". NO, this is not a proof that the belief is driving the symptoms. None of the things they quote proves there's a causality between a behaviour or a belief and symptoms. To demonstrate a causality, you'd have to have a way more complex process than just putting two things together and say one causes the other.

Once again, correlation is not causation.

This should be written in big red letters in every psychology university.
 
That there is a correlation between thinking the illness is bad and lower functioning some time later is entirely consistent with the illness actually being bad. Chalder of course interprets this as these thoughts being a self fulfilling prophecy that causes worsening of the illness.
 
That CBRQ questionnaire is so biased and terrible it's unbelievable (found a link (p.450-2) on this thread)

These are some of the questions that they presumably think indicate 'Unhelpful cognitive and behavioural responses' rather than someone who legitimately might just experience PEM as a symptom.
  • I am afraid that my daughter will make her symptoms worse if she exercises
  • Physical activity makes my daughter’s symptoms worse
  • My daughter should avoid exercise when she has symptoms
  • My daughter’s illness is awful and I feel that it overwhelms her
  • When my daughter experiences symptoms, she rests.
  • My daughter tends to avoid activities that make her symptoms worse
  • My daughter tends to do a lot on a good day and rest on a bad day
  • My daughter avoids making social arrangements in case she is not up to it
  • My daughter avoids stressful situations
 
Chalder must be a slow learner. Thirty years and still doesn't get the basics.

And how can one assess whether cognitive and behavioural responses are helpful or unhelpful. It all depends upon the criteria for assessment. The bases for selecting those criteria are subjective.
 
CONCLUSION::
Unhelpful cognitive and behavioural responses to symptoms appear to be particularly prominent in adolescents with CFS. ...

So the logical conclusion of that should be:
We've got our model upside down all these years. Those responses of avoiding activity that make you sicker are actually helpful, not unhelpful. These children are sick, and pushing to do more makes them sicker.
Aaaaaaaaaaaagh :banghead:

It's so dispiriting that whole new generations of psychologists and psychotherapists are being taught this upside down nonsense.
 
It is interesting that they recognise boom and bust as a problem. If the disability is perpetuated by unhelpful beliefs there would be no bust. 'Overdoing it' would just make the children fitter, surely.

I am sure this was recognised by others in 1989 which makes me wonder just how much communication they had with doctors outside their own little cult before describing their new condition. I am sure that that is in part what led to the belief that if, this is what they were seeing in patients, their patients were dissimilar to those who were previously diagnosed. this they have, of course always denied. But one or other of their propositions has to give.
 
It is interesting that they recognise boom and bust as a problem. If the disability is perpetuated by unhelpful beliefs there would be no bust. 'Overdoing it' would just make the children fitter, surely.

It could be that unhelpful belief gets in the way of patients building up over time, but that there's some reason for patients not being able to rapidly increase their activity levels (physiological, or based on fear-anxiety that needs to be gradually assuaged through GET). There's no real evidence for that, but that sort of model could explain their use of 'boom and bust'.
 
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