Adolescent and parent perceptions of fatigue in paediatric multiple sclerosis

[Kyla]

http://www.ejpn-journal.com/article/S1090-3798(16)30088-5/fulltext

ugh. I don't know whether to feel relieved that these nutbars have moved (some of their attention) on to a different disease, or horrified that they have found a new set of children to torment and stigmatise.

I'm sure you can all guess without reading the paper what their forgone conclusions and recommendations are,
If not I have highlighted a relevant passage underneath the abstract.

“It feels like wearing a giant sandbag.” Adolescent and parent perceptions of fatigue in paediatric multiple sclerosis

DOI: http://dx.doi.org/10.1016/j.ejpn.2016.06.004

Susan Carroll, MSc, Trudie Chalder, PhD, Cheryl Hemingway, MBChB FRCPCH PhD, Isobel Heyman, MBBS PhD, Rona Moss-Morris, PhD, Professor

Highlights

• •Fatigue is a highly disruptive symptom for caMS and parents.
• •Parents and caMS experience fatigue as an uncertain, uncontrollable symptom.
• •Fatigue evokes concern in parents for caMS’ well-being and future.
• •CaMS highlight the implications of disclosure or non-disclosure of fatigue.
• •Implementing fatigue management strategies in clinical practice is imperative.

Abstract
Aim
Fatigue is one of the most common and disabling symptoms of paediatric MS, associated with depressed mood, impaired school performance and lower quality of life. Fatigue in children and adolescents with MS (caMS) is poorly understood, and effective treatments for fatigue are currently lacking. No qualitative studies have previously examined fatigue in caMS. Thus, the objectives were (a) to explore experiences of fatigue in paediatric MS and (b) to gain insight into how caMS and their parents respond to and manage fatigue.

Methods
In-depth semi-structured qualitative interviews were conducted with 15 caMS and 13 of their parents, either face-to-face or via telephone. Inductive thematic analysis was primarily used, incorporating elements of grounded theory.

Results
Five key themes were identified in the data. Participants described mentally and physically exhausting fatigue, which they perceived as uncertain and uncontrollable. Parents expressed concern about caMS’ well-being and future because of fatigue, whilst caMS discussed the implications of disclosure or non-disclosure of fatigue to peers and teachers. An additional overarching theme addressed participants’ emotional responses to fatigue. Participants stressed the need for better guidance on fatigue management.

Interpretation
This study provides a unique insight into the experience and management of fatigue in paediatric MS from the perspective of both caMS and parents. Some findings echoed experiences of fatigue in other populations, whilst new factors in paediatric MS also emerged. Fatigue management interventions involving caMS, parents and teachers should be developed and implemented in clinical practice.

(*The bolding is mine)

Despite its impact, fatigue in paediatric MS is poorly understood and under-researched. In adult MS, however, a wider body of evidence has supported a cognitive behavioural model of fatigue, which proposes that biological disease factors may initially trigger fatigue, which is then perpetuated by the interaction between biological factors and patients’ cognitive, behavioural, and emotional responses. Cognitive factors such as perceiving fatigue as an uncontrollable, unpredictable symptom, and behavioural factors such as over-exertion and excessive rest have been associated with increased fatigue. Fatigue can also be exacerbated by its reciprocal relationship with emotional factors such as depression and anxiety. Similar models have been developed in adolescent Chronic Fatigue Syndrome (CFS) where fatigue is the dominant symptom of the illness. These models have informed the development of effective cognitive behavioural therapy based interventions for fatigue, yet similar research in caMS is lacking.

 

[Sidereal]

Vile.

 

[shannah]

Perhaps they'll be digging their own graves, especially if Naviaux/Davis publishes some enlightening mito findings.

 

[Cheshire]

Someone should recall these people that psychologists are supposed to help people, not stigmatize them. Even if fatigue in MS were linked with low mood, I don't see how this ridiculous speech about faulty cognition and maladaptive behaviour, which is profoundly accusatory, could be useful.

They don't even aknowledge the dreadfull fate these young patients are facing.

And once again, corelation is causation...

Yurkkk

 

[A.B.]

Chalder should not be allowed to work with patients or be able to influence their treatment. She is dangerously crazy.

 

[A.B.]

On the bright side, they really are starting to sound more and more crazy. In CFS there is so much uncertainty and lack of good information that one can excuse the average person for finding these cognitive behaviour narratives plausible. In MS convincing people that the fatigue is psychosomatic probably won't be as easy.

 

[sarah darwins]

Good grief. Yet again you wonder, how do they get away with this?

In adult MS, however, a wider body of evidence has supported a cognitive behavioural model of fatigue, which proposes that biological disease factors may initially trigger fatigue, which is then perpetuated by the interaction between biological factors and patients’ cognitive, behavioural, and emotional responses. Cognitive factors such as perceiving fatigue as an uncontrollable, unpredictable symptom, and behavioural factors such as over-exertion and excessive rest have been associated with increased fatigue.

er ... "a wider body of evidence has supported"? Really? If you look at the references for the paper, more than half are to papers co-written by these same people, the rest nearly all by close allies. Wider body of evidence my arse.

 

[A.B.]

Good grief. Yet again you wonder, how do they get away with this?



er ... "a wider body of evidence has supported"? Really? If you look at the references for the paper, more than half are to papers co-written by these same people, the rest nearly all by close allies. Wider body of evidence my arse.

Not to mention that their definition of evidence is crazy. For them, a mere correlation plus the mere theoretical possibility (with no consideration of alternative explanations) is already evidence. So what they really mean by evidence based is "it could be interpreted in this way".

One of these days they're going to realize that they walked over a cliff and have no solid ground under their feet, and that a hard impact with reality is imminent.

 

[Sidereal]

"Cognitive factors such as perceiving fatigue as an uncontrollable, unpredictable symptom"

It fucking IS uncontrollable and unpredictable. Are they seriously suggesting that MS patients have control over their fatigue?

 

[Snowdrop]

The bit you highlighted shows that our expectations can be that BPS will likely not leave us alone any time soon. Any biological findings are meaningless in the face of our psychological perpetuating. I hope other scientists start to get on board to speak out that that belief is not science.

 

[Roy S]

Hopefully the MS community is well established and very well organized to deal with this.

The Emperor's New Clothes is probably not a new story there in merry olde England.