Developing a biopsychosocial model and self-management treatment for fatigue in paediatric multiple sclerosis (CFS included a bit), 2019, Carroll

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Possibly only abstract available online at the moment:

https://kclpure.kcl.ac.uk/portal/en...is(b2b8bf27-5410-4241-be98-8a9a86016739).html

Developing a biopsychosocial model and self-management treatment for fatigue in paediatric multiple sclerosis
Doctoral Thesis › Doctor of Philosophy

Susan Carroll

Fatigue is one of the most common and disabling symptoms of multiple sclerosis (MS), affecting up to 76% of children and adolescents with MS (caMS). Whilst Cognitive Behavioural Therapy (CBT) has been effective in reducing fatigue severity and impact in adult MS and adolescent Chronic Fatigue Syndrome (CFS), fatigue in paediatric MS remains poorly understood and effective treatments are lacking. Using mixed-methods, this thesis aimed to develop a biopsychosocial model of fatigue in paediatric MS and a related self-management treatment for caMS with fatigue.

A systematic review of fatigue in caMS found that fatigue is unrelated to clinical factors measured to date, but is correlated with psychosocial factors including depressed mood, impaired school performance and lower quality of life. The review highlighted the need for research in this area to identify potentially modifiable factors associated with fatigue. A qualitative study using thematic analysis with caMS (n = 15) and their parents (n = 13) offered insights into perceptions of fatigue as an uncontrollable and uncertain symptom, difficulty balancing activity and rest, parents’ concern about their children’s fatigue, and the role of social support and disclosure in caMS’ management of fatigue. A cross-sectional study (n = 175) compared 30 caMS (15 fatigued; 15 non-fatigued), 30 adolescents with CFS, 30 healthy controls and their respective parents on measures of fatigue, neurocognitive functioning and psychosocial factors previously associated with fatigue in other conditions. Fatigued caMS and adolescents with CFS reported equivalent fatigue severity, functional impairment, daytime napping and cognitive behavioural responses to symptoms scores, which were significantly higher than those of non-fatigued caMS and healthy controls. There were no between group differences on sleep behaviours (except daytime napping) or psychological difficulties, and neurocognitive impairment was evident in caMS regardless of fatigue. Parents of all illness groups reported significantly higher unhelpful cognitive behavioural responses to fatigue than parents of healthy controls, and distress was higher in parents of the fatigued than non-fatigued groups.

Findings from all studies informed the development of a paediatric MS-specific cognitive behavioural model of fatigue. Following the Intervention Mapping framework and person-based approach to enhancing intervention acceptability, this model informed the development of an eight-week guided CBT based self-management treatment for caMS with fatigue and their parents, which was refined with patient and parent involvement. The intervention was tested in a feasibility study, where low uptake indicated that it is not feasible in its current form. Overall, this thesis contributed to a more comprehensive understanding of fatigue in caMS than that achieved in the literature to date. It offered potential avenues for intervention, which require further adaptation and evaluation before implementation is possible in clinical practice.
Original language English
Awarding Institution
Supervisors/Advisors
Award date 1 Mar 2018
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https://kclpure.kcl.ac.uk/portal/en/persons/susan-carroll(c9101ea1-a5ab-494a-a5ca-fb00091d741d).html
 
A systematic review of fatigue in caMS found that fatigue is unrelated to clinical factors measured to date, but is correlated with psychosocial factors including depressed mood, impaired school performance and lower quality of life
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And what do we say about correlation? That's it's not causation. Especially when it's so obviously a consequence of. Good grief these people are so desperate to show that the last 3 decades of this BS have not been the complete and total waste that it was. This is just embarrassing. What kind of start to a career is that as a thesis? It's malpractice to actually do that to someone.
Parents of all illness groups reported significantly higher unhelpful cognitive behavioural responses to fatigue than parents of healthy controls
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Who was it who commented to Wessely on a panel "do you hear yourself talk?" This obsession with finding a psychological model of "fatigue", whatever is meant by this here, is seriously pathological and deranged. There are flat-earthers out there who are less ridiculous in trying to come up with evidence and are at least embarrassed when their experiments show them wrong.
The intervention was tested in a feasibility study, where low uptake indicated that it is not feasible in its current form
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Having the option of actual medical care, not much surprise that people would decline to participate in this nonsense. So much easier to manipulate people when you have successfully blocked all other options. Incredibly, despite this, the conclusion is always and forever shall be: more research is needed. Because reasons, as usual.

Still there is a lesson to be had: if patients say no to nonsense, it stops the train. Something to consider moving forward, and definitely related to discouraging ME patients from joining organizations and support groups. Maybe advising ME patients not to agree to any kind of nonsense just because it comes from licensed medical professionals, that they don't have to desperately try obvious pseudoscience when it looks this ridiculous.
 
That final paragraph would be funny if it wasn't so sad:

Start with some high-minded sounding meaningless jargon:
Following the Intervention Mapping framework and person-based approach to enhancing intervention acceptability, this model informed the development of an eight-week guided CBT based self-management treatment for caMS with fatigue and their parents,...
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Show you've ticked all the politically correct boxes of patient involvement:
...which was refined with patient and parent involvement.
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Admit if failed dismally because no one wanted to do it:
The intervention was tested in a feasibility study, where low uptake indicated that it is not feasible in its current form.
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Pretend you've made a valuable contribution:
Overall, this thesis contributed to a more comprehensive understanding of fatigue in caMS than that achieved in the literature to date.
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And all it needs is a little tweak:
It offered potential avenues for intervention, which require further adaptation and evaluation before implementation is possible in clinical practice.
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Carefully worded to suggest it's worth wasting more taxpayer's money on garbage. Post doc fellowship anyone?
 
I thought about this paper a bit more yesterday and in some ways it's devastating to the entire BPS ME model. It's roughly the same stuff as FITNET and something like a dozen other attempts at self-managed CBT for "fatigue". I'd put FINE in that category and possibly PRINCE, if I remember correctly what it was about. There's a recent one by Knoop as well. Always fails on practical measures, always concludes otherwise.

Here the paper positively compares the "fatigue", or whatever their interpretation of fatigue is, between CFS and MS, they are at a similar enough level. The fatigue component of the BPS CFS model is strictly generic and as such comparable, if not identical, to the BPS model of MS "fatigue". For all practical matters, the "fatigue" discussed here is perfectly equivalent to the "fatigue" in the ME BPS model, meaning it should work just the same.

MS patients have clinical options. They have access to high-quality medical care from GPs and specialist clinicians and nurses. I have seen very often in discussions that involve people with MS that they rate "fatigue", though probably the same issue and that it's more of a flu-like sickness feeling, and brain fog (as the Reddit discussion in this thread showed once more) are pretty much the most disabling symptoms for MS patients. Similar reports from pretty much every immune-mediated and autoimmune diseases are found: those symptoms are some of the most disabling but specialists are not interested. In the thread I linked about brain fog for autoimmune diseases it states that 90% of autoimmune disease patients rate those as the most impactful symptoms.

In the BPS model, fatigue is this generic "feeling of tiredness" and is nonspecific. So the "fatigue" used here is considered equivalent whether it's MS, Parkinson's, ME or Lupus. There should be no particular difference between those diseases about the specific symptom of fatigue. So there is no reason why it should "work", which is false but BPS proponents still claim so, in ME but found to be so utterly useless by MS patients that they would decline to even participate in a prospective study.

Because there are still ongoing trials of similar internet-delivered self-manage CBT for fatigue in CFS. Some in the past are considered a success. Yet MS patients, who should technically be equally impacted, find it so ridiculous they decline to participate in high enough numbers that it doesn't even get off the ground.

The BPS approach is to never attempt to falsify, always try to prove it right instead. The rejection of ME patients is argued to be a pathological refusal against psychological treatments, and yet perfectly equivalent MS patients reject it in even greater number because they have actual alternative and are not coerced into being "good patients".

Makes me think of chi masters going against real opponents. So used to deal with a closed bubble of people who play along and throw themselves on the ground, suddenly doesn't work as well when facing people who don't give in to the make-believe. The emperor should definitely not be foolish enough to lend his invisible garment, yet clearly is.
 
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