Home-based family focused rehabilitation for adolescents with severe Chronic Fatigue Syndrome, 2018, Burgess et al (inc Chalder)

Andy

Andy

Senior Member (Voting rights)
Abstract
Aims:
The purpose of this article is to describe and evaluate a home based, family focused rehabilitative approach for severely affected housebound adolescents with Chronic Fatigue Syndrome (CFS). The main aims were to facilitate a return to school, improve physical functioning, reduce fatigue and assess any adverse effects of the intervention.

Methods:
Six housebound adolescents aged 11–18, diagnosed with CFS by a paediatrician, were assessed and treated at home by an experienced cognitive behaviour therapist. Outcomes were assessed 12 months after discharge from treatment.

Results:
At 12 months follow-up all patients had returned to either school or college, and physical functioning had improved in most of the patients. Fatigue had reduced in some. No adverse effects of the intervention were reported.

Conclusion:
Severely affected adolescents with CFS showed improved physical functioning and social adjustment after a home-based rehabilitative approach. Although several patients showed improvements in physical functioning, they did not all show substantial improvements in fatigue. At this crucial stage of development, it is important to offer young people and their parents hope by stating that improvement is possible.
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Paywalled at http://journals.sagepub.com/doi/abs/10.1177/1359104518794764?journalCode=ccpa
 
ugh

Although several patients showed improvements in physical functioning, they did not all show substantial improvements in fatigue.
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For goodness sake, there were only 6 patients in the study. How hard would it be to say in the abstract 'three out of six showed improvements in physical functioning' and 'one (or two?) out of six showed substantial improvements in fatigue' instead of this wiffle-waffle?

If the adolescents were severely affected as reported in the abstract and only several patients showed improvements in physical functioning, how the hell did the three who didn't show improvements in physical functioning get back to school? Are they wheeled into the classrooms and put in corners with blankets over their heads?

I assume the return to school was part-time for most, although that is not stated.

Conclusion:
Severely affected adolescents with CFS showed improved physical functioning and social adjustment after a home-based rehabilitative approach.
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No, some adolescents showed improved physical functioning (and apparently social adjustment whatever that means) after a home-based rehabilitative approach [edit: and twelve months]. But there were no controls!! Correlation (in as much as you can have a correlation with six participants) is not causation.
 
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So a year after some home visits from a cbt therapist some of the patients had improved on some criteria. No control group. Would they have improved a bit over that time anyway? Who knows.
This is not science.
 
Daisymay said:
It seems journals will publish anything these days......

Interesting to see the full paper if someone has access?

So no GET? Or did the CBT involve some covert GET?
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That phrase 'family focused rehabilitative approach rings alarm bells to me. As soon as you hear the word rehabilitation in ME treatments it seems to mean increasing activity. The aim or rehab being to get back to full function.
 
Hutan said:
If the adolescents were severely affected as reported in the abstract and only several patients showed improvements in physical functioning, how the hell did the three who didn't show improvements in physical functioning get back to school? Are they wheeled into the classrooms and put in corners with blankets over their heads?
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Does suggest the symptom severity may not have directly correlated with ME-severity.
 
From the study... „It is important to note that change was not linear. Individual change over time was varied, with some individuals’ fatigue levels increasing. Improvements in physical functioning and social adjustment did not necessarily match changes in fatigue. This supports previous research where adolescents who report themselves as recovered still continue to experience fatigue symptoms (Sankey, Hill, Brown, Quinn, & Fletcher, 2006). One study found that in comparison to healthy controls, adolescents with CFS had unrealistic expectations of normative levels of fatigue (Garralda & Rangel, 2001). Therefore it is possible that participants were experiencing normal levels of fatigue compared to the general population, but that their expectations of fatigue were still lower than this. The aim of the current treatment was to help adolescents to deal with normal levels of fatigue that is experienced on an everyday basis. The findings suggests that in some participants, the ability to manage and tolerate fatigue improved.“ ....

So the fatigue in CFS is likely the normal everybody’s fatigue, just perceived wrong by adolescents with ME. :eek:
 
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One study found that in comparison to healthy controls, adolescents with CFS had unrealistic expectations of normative levels of fatigue (Garralda & Rangel, 2001). Therefore it is possible that participants were experiencing normal levels of fatigue compared to the general population, but that their expectations of fatigue were still lower than this. The aim of the current treatment was to help adolescents to deal with normal levels of fatigue that is experienced on an everyday basis.
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I have to concur with @arewenearlythereyet ...

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Therefore it is possible that participants were experiencing normal levels of fatigue compared to the general population, but that their expectations of fatigue were still lower than this. The aim of the current treatment was to help adolescents to deal with normal levels of fatigue that is experienced on an everyday basis.
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Thereby possible/probable they were not experiencing normal levels of fatigue at all. Which makes the treatment aim irresponsible at best.
 
Yeah, @arewenearlythereyet's tripe! :rofl:

strategist said:
Afterwards the patients flew off into the sunset on the backs of flying pigs.
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Oh my! :laugh:

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