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

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

 

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.

 

It's also unsurprising that CFS patients score worse on these questionnaires than asthma patients. They are much sicker.

 

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.

 

There seems to be a deluge if such research at the moment.
I hope that our NICE representatives and advisors can translate the cognitive dissonance into plain english for all to see.

 

"fatigue maintenance"?

Is this new terminology? A google search doesn't return anything.


ETA- I use the word "terminology" loosely.

 

'Could' is doing so much work in this sentence it's probably a breach of EU labour law.

 

http://poweroflanguageproject.weebly.com/double-speak.html

There are four types of doublespeak: euphemism, jargon, gobbledygook, and inflated language.

 

Hahaha, brilliant, thanks for the laugh.

 

The children have more insight than the researchers.

 

Sharpe recently asserted that he believes CFS has a biological basis. I’ve never seen anything from his colleague chalder to show that she does, in fact the opposite, plus she only ever studies fatigue. It’s laughable.

 

Surely it's membership of the MEA that is the determining factor, and probably not many of the children are members.

 

are the tests they did available online ?

is GET and CBT available as online training ?

 

I suppose comparing CFS with asthma was supppsed to show kids with CFS had excessive fears and such, not that there’s an agenda

 

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 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'.