Association between school absence and physical function in paediatric [CFS/ME], 2009, Crawley & Sterne

Crawley E, Sterne JA. Association between school absence and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy. Arch Dis Child. 2009 Oct;94(10):752-6. doi: 10.1136/adc.2008.143537. Epub 2008 Nov 11. PMID: 19001477.

https://pubmed.ncbi.nlm.nih.gov/19001477/

Abstract

Objective: To investigate factors associated with school attendance and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME).

Design: Cross-sectional study.

Setting: Regional specialist CFS/ME service.

Patients: Children and young people aged under 18 years.

Outcome measures: Self-reported school attendance and physical function measured using the physical function subscale of the Short Form 36.

Methods: Linear and logistic regression analysis of data from self-completed assessment forms on children attending a regional specialist service between 2004 and 2007. Analyses were done in two groups of children: with a completed Spence Children's Anxiety Scale (SCAS) and with a completed Hospital Anxiety and Depression Scale (HADS).

Results: Of 211 children with CFS/ME, 62% attended 40% of school or less. In children with completed SCAS, those with better physical function were more likely to attend school (adjusted odds ratio (OR) 1.70; 95% CI 1.36 to 2.13). This was also true for those with completed HADS (adjusted OR 2.05; 95% CI 1.4 to 3.01). Increasing fatigue and pain and low mood were associated with worse physical function. There was no evidence that anxiety, gender, age at assessment, family history of CFS/ME or time from onset of symptoms to assessment in clinic were associated with school attendance or physical function.

Implications: Paediatricians should recognise that reduced school attendance is associated with reduced physical function rather than anxiety. Improving school attendance in children with CFS/ME should focus on evidence-based interventions to improve physical function, particularly concentrating on interventions that are likely to reduce pain and fatigue.

 

And what about cognitive function ?
Concentration can be limited without PEM. This seems to be especially difficult for others to understand.

 

Is this yet another study indicating that the worse someone's health is the more it impacts on what they are able to do?

At least it is not saying CBT or variant of CBT is the answer regardless of the question, but as @Amw66 points out it hardly adds to our understanding of the complexity of paediatric ME. Their conclusion:

goes well beyond their evidence. Stopping gaslighting children about their health issues being psychological is a big step forward for Crawley, but this still leaves the door open for increasing activity by GET under a different name.

We have as yet no evidenced based interventions either to improve physical function or to reduce pain and fatigue, and we have no idea whether improving school attendance is or is not a helpful goal for all children with ME. Though there is some evidence of higher rates of improvement or even recovery in paediatric ME compared to adults, there is no evidence that it is down to any intervention from medical professionals. Anecdotally reducing activity to below thresholds of triggering PEM may be more beneficial than any active intervention. Concluding that reducing school attendance within the limits of an individual’s current health is an equally rational conclusion and has the advantage of not gaslighting the child that if they follow the paediatrician’s advice their health will improve.

I would think that, given our current ignorance on how to treat the underlying condition, exploring what aspects of school are most useful in the short term, be it social or educational, and how they can be provided within the child’s current activity envelope, exploring use of video link, home tuition, etc would be more helpful. It is sad that years of research and clinical experience have not yet caught up with the starting point of most parents.

 

Thank you for pointing this out, I totally failed to check the date.

That is depressing to see how little impact it has had on Crawley’s subsequent work, and how little her understanding of her main academic field has progressed in the last thirteen to fourteen years.

 

Notably the date is pre the effective deregulation of some schools/ establishment of other forms of schools with direct funding , from LA control from 2010 onwards in England.
Free schools and Academies are not the best at accommodating SEN pupils and offrolling is rife.

ECs later research probably fits the revised political narrative better .

ETA clarification added to first paragraph

 

Correction: Association between school absence and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy

"The Editor of the journal has agreed to a request from the authors that the ethics statement should be changed to improve its clarity. This request was received in October 2019. Due to an internal miscommunication at the publisher the correction was not made. The publisher apologises for this oversight. The new statement is as follows:

‘The North Somerset & South Bristol Research Ethics Committee decided that the original collection and analysis of data from the regional specialist paediatric service was service evaluation and as such did not require ethical review by an NHS research ethics committee or approval from the NHS R&D Office (REC reference number 07 /Q2006/48). In a letter dated 29 January 2007, the Chair of the Research Ethics Committee had previously confirmed (a) that it would not be necessary to apply for ethical permission to use the data being collected as part of service evaluation for the national CFS/ME collaborative and (b) that if in future this data were to be used as part of a research project, this would be agreeable.’"

https://adc.bmj.com/content/early/2022/11/08/adc.2008.143537.corr1

@dave30th

 

Thanks. So Archives says it was their fault. But of course Esther had an obligation to pursue it if it fell through the cracks, but she didn't. So Archives was incompetent and Esther failed to do what she was asked to do.

 

The new ethics statement hardly informs the reader of the reality of what happened. At best it serves to obfuscate a serious breach of the ethical approval process.

 

Moved post

https://adc.bmj.com/content/107/12/e34