Adolescent’s descriptions of fatigue, fluctuation and payback in CFS/ME: interviews with adolescents and parents, 2018, Crawley et al

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Amw66

Senior Member (Voting Rights)
New paper - has a number of red flags.

Focuses on fatigue description and " payback" as a description for PEM without much definition. Questionnaire based, pre diagnosed
Mild/ moderate but not housebound
I don't know if any comorbidities (OI, EDS etc) have even been thought about

I have not had time to dip into to it, but given questionnaire basis and age group involved have some concerns re " telling people what they want to hear to make them go away", which may be unfounded.
Heterogenity of illness highlighted

https://bmjpaedsopen.bmj.com/content/2/1/e000281.info
https://bmjpaedsopen.bmj.com/content/bmjpo/2/1/e000281.full.pdf
 
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Abstract:
Objective
As part of a larger qualitative study to explore outcomes important in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) and what improvements in fatigue and disability are key, interviews were undertaken with adolescents and their parents.
This paper focuses on their descriptions of fatigue, fluctuation of symptoms and payback.

Design and setting
Semistructured qualitative interviews were undertaken between December 2014 and February 2015. Adolescents and parents were interviewed separately. Participants were recruited from a single specialist paediatric chronic fatigue service. Interviews were audio recorded, transcribed verbatim and analysed using thematic analysis.

Participants
We interviewed 21 adolescents and their parents (20 mothers and 2 fathers). The adolescents were aged between 12 and 17 years of age (mean age 14.4 years), mild to moderately affected by CFS/ME (not housebound) and the majority were female (16/21).

Results
All adolescents with CFS/ME reported fatigue, a natural fluctuation of the condition, with good days and bad days as well as an increase in symptoms after activity (payback).
However, adolescent’s descriptions of fatigue, symptoms and the associated impact on their daily lives differed. The variations included: fatigue versus a collection of symptoms, constant versus variable symptoms and variable symptom severity. There were differences between participants in the amount of activity taken to cause payback. The impact of fatigue and symptoms on function ranged from: limiting the duration and amount of leisure activities, struggling with daily activities (eg, self-care) to no activity (sedentary).

Conclusions
Fatigue, fluctuation of the condition and payback after activity are described by all adolescents with CFS/ME in this study. However, the individual experience in terms of how they describe it and the degree and impact varies
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I find it disheartening that after so many years of adolescent research, that researchers and those treating the illness have not got to grips with the basics.
It is not fatigue, it is fatiguability that distinguishes things; moreover fatigue may not be the most debilitating of symptoms for many, but seems to be the most focused upon. Everything else is treated as " other", when it could be intrinsic, could be another diagnosis, could be treatable.....
 
Amw66 said:
I find it disheartening that after so many years of adolescent research, that researchers and those treating the illness have not got to grips with the basics.
It is not fatigue, it is fatiguability that distinguishes things; moreover fatigue may not be the most debilitating of symptoms for many, but seems to be the most focused upon. Everything else is treated as " other", when it could be intrinsic, could be another diagnosis, could be treatable.....
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Note semi structured interviews - the framing of the topic would be interesting to see and may account for the fatigue focus and any introduction of bias; is there any way to access this ?
 
Fatigue versus a collection of symptoms
Some adolescents described only experiencing ‘tiredness’, whereas others described a collection of severe symptoms:
There’s no really symptoms of it for me, there’s no pain or anything, apart from tiredness. (C16, male)
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That suggests to me they are overdiagnosing - including kids who don't have ME. Tiredness on its own is not ME.
 
Andy said:
It says in the small print, "Patient consent: Not required.". I'm surprised that no consent was required, can anybody offer an explanation why it wouldn't be needed?
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It's St Esther - she can do what she wants. :mad: But I haven't read the whole thing yet - maybe there's some sort of excuse? Guessing it might be something along the lines of "this data used for other papers so we can do what the hell we like with it now as we got permission before already." :ill:

(edited for punctuation)
 
ladycatlover said:
Surely this is just yet more Blah from the same data as @dave30th is looking at currently? Dates match? Adolescents and parents interviewed. Haven't had time to read the full paper yet.
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I'm wrong about the dates etc. Here's what it says about Ethics Approval:

Ethics approval Full ethical approval was obtained from the NRES Committee North West (08/04/2014, ref 14/NW/0170). An amendment to use one-to-one interviews with adolescents, parents and clinicians who are unable to attend focus groups and to include exploration of important outcomes was approved (21/10/2014, ref 14/NW/0770). Relevant R&D approval was obtained from the RNHRD (20/06/2014, ref-RBB 427).
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Sean said:
Stopped there.

Enough with the career-enhancing qualitative spinfest. Use objective measures (and report them honestly), or GTFO of the game. :grumpy:
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But, that would be devastating to their case. Every objective study they tried failed miserably.

I think a much bigger deal should be made of that fact. They have been allowed to cheat for so long it's tradition at this point but the fact that they very deliberately and knowingly stay far away from objective research, to the point of stopping planned objective outcomes in their flagship study, really ought to be stated much more often. Like, every single time.

In the very best case this kind of subjective research can be useful as indicative that objective, more expensive, studies be made. But after 3 WHOLE DECADES of this nonsense the game is up. They have over a decade of NICE guidelines in place by now. This should have lead to large, objective measured outcomes to make sure the guidelines are actually working as intended. They were continued in 2017 on the basis that they worked, yet no data was brought forward. The subjective tiny trials are irrelevant after a whole decade in practice.

Objective research or GTFO indeed. This is a point of basic scientific integrity that can be made in general, not just about ME research. It is not controversial in itself.
 
There is no real psychobabble in this. Nor is there promotion of CBT, graded activity or similar approaches.

However it looks like an earlier version in the peer review process did ascribe some improvements to treatment in the centre


Changes over the course of the illness (table 1)

As well as fluctuation of the condition in the present, participants often described changes over time and being more severely affected at the onset of CFS/ME. Improvements were often linked to treatment and naturally learning to manage the condition. Sleep was regularly referred to, often improved through medication. An improvement in fatigue or specific symptoms was described with increased energy that allowed adolescents to carry out activities that were previously limited. Some adolescents recalled pushing themselves previously, leading to payback and fluctuation. However, not all adolescents talked about improvements, some had relapsed.
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Parslow 2018 not in final version.jpg
Parslow 2018 not in final version.jpgParslow 2018 not in final version part 2 of table 1.jpg

Reviewer 2 said:
g. I don’t understand table 1. Are these improvements following treatment or adaptations to chronic illness? More literature on this topic was needed.
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https://bmjpaedsopen.bmj.com/content/bmjpo/2/1/e000281.reviewer-comments.pdf
 
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