Internet-delivered [CBT] for chronic fatigue among adolescents with a chronic medical condition, 2023, Nijhof, van de Putte, Knoop et al

Internet-delivered cognitive behavioural therapy for chronic fatigue among adolescents with a chronic medical condition: a single case study

Abstract
Background:
Severe fatigue is a prominent symptom among adolescents with a chronic medical condition, with major impact on their well-being and daily functioning. Internet-based cognitive behavioural therapy (I-CBT) is a promising treatment for severe fatigue among adolescents with a chronic medical condition, but its effectiveness has not been studied.

Aims:
We developed an I-CBT intervention for disabling fatigue in a chronic medical condition and tested its feasibility and effectiveness in an adolescent with an immune dysregulation disorder (IDD), namely juvenile idiopathic arthritis (JIA).

Method:
The application of I-CBT is illustrated through a clinical case study of a 15-year-old girl with JIA and chronic severe fatigue. An A-B single case experimental design was used with randomization of the waiting period prior to start of the intervention. Outcomes were weekly measures of fatigue severity, physical functioning, school absence and pain severity.

Results:
Fatigue severity significantly decreased following I-CBT. Improvements were observed towards increased school attendance and improved physical functioning following the intervention, but these effects were too small to become significant.

Conclusions:
The study provides preliminary support for the feasibility and effectiveness of the application of I-CBT for severe fatigue in adolescents with a long-term medical condition.

https://www.cambridge.org/core/jour...e-case-study/D451919571B112EE255B6DC00CC78E73

seriously?

 

This seems to show once again that cognitive factors have don't have a causal role in disability.

Whether the fatigue has really improved or not is also unclear.

 

By definition, if it's too small to be significant, it's not effective. Good grief these people have been selling this as a complete cure for decades onto millions of people and here they are trying to make something out of single anecdotes that don't even mean anything.

They tried selling a useless product and now they have so much supply for it and there's no one in a position to make a difference with the courage to stop this madness.

 

Publications need to sort themselves out - it is a standing joke now. When did people get away with writing "trust me guv, I definitely think they seemed much better after they did my treatment that I'm asking for funding on" in a 'scientific' research publication? Are they not embarrassed to be printing that? Is that what BPS call their 'evidence'? their own personal writing of a one-liner like that then claiming it is 'peer-reviewed' so is 'evidence'?

People should surely have to write the phrase 'hypothesis rejected', 'not proven', 'was not significant' ie not proven in the Results: -- bit
and then should have to have Conclusion(s): --- based on those basic tenets of hypothesis was either rejected or proven being 'what the results must be' and actually follow-on from them.

It is a switch-and-bait plain and simple if your results eventually admit 'not significant' then conclusion claims 'support', 'feasilbility' and 'effectiveness' ie the opposite - or am I missing something?

 

Just in case anyone who hasn't seen other threads illuminating why Knoop etc don't like to use actigraphy I'll add it in after his claimed 'explanation'

From the following paper in 2013, which included Knoop: https://www.s4me.info/threads/the-p...n-fatigue-2013-knoop-et-al.24643/#post-406586

One quote on this result from the actual 2013 paper is:

I bolded that last line because it needs to be caveated with mentioning the method in the paper included not telling people their actimetry, so the 'increase in physical activity' being mentioned by patients is likely based on their perceived levels of activity which are 'out of kilter' with objective activity as per the graph above for anyone who responded to 'the treatment'.

It shows how the 'reframing mindset' of this type of CBT can sadly warp into reframing reality and results.

I can't help but wonder when is someone going to call out 'the 'reframing/reframers(?)' School' and their type of 'reframing' by other terms that you could use for it?

 

This is astounding!

First I note my relief that (my bolding) an Ethical Review Board steps in to stop her I-CBT when she 'has a flare' - otherwise known as getting worse if you don't play into the misleading terms 'relapse/flare' used by BPS for 'gets worse from normal level of illness that doesn't 'return to normal' (because it isn't a condition of 'flares')'

Secondly - yes to everything you say.

First she ended up getting worse enough the rheumatologist was consulted and the ethics board stopped 'i-CBT' and then she ended up in hospital, and they waited for that treatment and rest from their treatment before they then claimed 'how she was at that point' was their results

If this was based on one case study I hope they are selling it as what it is, something that from an 'objective measure' perspective had someone go into a deterioration that they had to stop 'i-cbt' to recover from, and then hospitalised

- how is that 'commensurate with' stating results as: "Improvements were observed towards increased school attendance and improved physical functioning following the intervention, but these effects were too small to become significant"???

 

As an aside it has struck me just now that are there 2 areas/specialisms of medicine with more of a power-imbalance over patients/for patients word to be heard etc than psychiatry or pediatrics - and what that should really mean as far as additional protections to ensure a 'tendency not to hear or take seriously' doesn't lead to issues if it is happening even in the research stages etc.

Should there be even more safeguards re: objective measures being required and independence built in and guaranteed in administration of any subjective aspects and absolutely ensuring there can be no 'perception of threats possibly associated with 'incorrect answers', or not pushing onself to 'attend school even if extremely unwell'' etc.

It does feel like Ethics COmmittee is one place where this would come in, and it does feel like someone outside the sector and 'system' (as BPS ideology has been inbuilt through so many) - and why not parents and non-BPS scientists - are perhaps needed for objectivity, independence etc.

One thing that really concerns me is the lack of proper outcome measures with regards whether - one of the main points of school - short-term, medium and long-term children's actual education and health were benefitted one way or another.

It is bad enough imagining the impact of presenteeism being enforced at work due to financial constraints ending up with someone's condition getting permanently worse. But for a child, who might have recovered if they had enough time off, or benefitted from doing things a different way school-wise, is using 'school attendance' even actually either appropriate or separate from external influences (such as fines or being made to by other worries).

It seems a cyclical 'missing the point' when someone says 'school's important' because of their education and then it being used as a measure of apparent health colludes to 'encourage' someone to attend without anyone bothering to check it doesn't make their health worse and their educational attainment worse (and potentially their ability to attend school in future worse) than if they'd had homeschooling arrangements. And the 'being with friends' stuff I take with a pinch of salt too given if you feel terribly ill and it makes your health worse I'm unsure that can be a selling point over arrangements for schoolfriends to keep in touch in ways that doesn't overexert etc.

 

Linde Nijhof is in the business of helping asthma-patients getting control over their asthma by improving their quality of life. Sanne Nijhof works for a peadiatric hospital with the purpose of developing web-based interventions.

https://www.umcutrecht.nl/en/research/researchers/nijhof-sanne-sl

Jan Oostveen is apparently big on SOLK, if anyone is interested in a word-salad you can google translate this:

https://medischonverklaardeklachten.wordpress.com/

The one that puzzles me the most is Joris van Montfrans as he seems to be an immunologist specialized in children. None of his previous publications seem to be about psychology.

https://pubmed.ncbi.nlm.nih.gov/?term=montfrans+j

Can't imagine there being 2 people with that exact name in the Netherlands tbh so it must be him. Why he'd co-sign a piece of crap like this is a mystery.

 

I get the impression that this paper is a bit like a family of stick insects that decided to go for a walk where a group of chameleons had decided to make a stake out.

 

They really don't think much of us, uh? This is almost toddler "got your nose" level of not respecting other people's abilities. This is idiotic, no way to mince words about it.

Again, this is taking people "seriously" the same way as an adult would take a toddler seriously. First of all we can judge scientific evidence to a certain degree, but none of what they do has any bit of science so that's just extra irrelevant. They have nothing, only stories and metaphors, and boy can we judge the hell out of those without even having to think much about it, they sure didn't bother.