The importance of school in the management of (ME/CFS): issues identified by adolescents and their families, 2022, Cleary, Crawley et al

Full title: The importance of school in the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): issues identified by adolescents and their families

Abstract

Paediatric Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a disabling condition. Schools play a key role in adolescents' experiences with managing ME/CFS. However, little is known about the experiences of adolescents with ME/CFS (and their families) in schools.

This paper is an incidental qualitative study, which combines data from two independent ME/CFS studies: study 1 researched ethnic minority adolescents with ME/CFS; study 2 explored Acceptance and Commitment Therapy for adolescents with ME/CFS who had not recovered after one year. Participants included: adolescents with ME/CFS; their families; and medical professionals (ME/CFS specialists and non-specialists). Adolescents, their families, and ME/CFS medical professionals were recruited from a UK specialist paediatric ME/CFS service. Non-ME/CFS medical professionals were recruited from the same region. Semi-structured qualitative interviews and focus groups were undertaken. Participants' views on schools from each study were combined and thematic analysis was used to identify themes.

Fifteen adolescents with ME/CFS (11–17 years old), sixteen family members, and ten medical professionals (GPs, school nurses and ME/CFS specialists) were interviewed. Four key themes were found: (1) adolescents identified school was important for aiding ME/CFS recovery, especially educationally and socially; (2) families described varying levels of support from schools and local authorities with help managing ME/CFS – some described significant practical and emotional difficulties to accessing education, whereas others recounted examples of positive supportive strategies, particularly when teachers had previous experience or knowledge of ME/CFS; (3) parents thought three-way communication between schools, healthcare and families could improve support; (4) participants felt schools were an appropriate place for knowledge building and raising awareness of ME/CFS amongst teachers and pupils, to aid improved supportive measures.

In conclusion, this paper provides rich data that highlights the importance of education and the realistic fears and hurdles for adolescents with ME/CFS remaining engaged in education and the impact on their future. Some families described positive strategies in school, which were viewed as helpful to manage ME/CFS in the classroom. These strategies could be implemented alongside knowledge building initiatives and improved communication between healthcare and education. There is a need to further investigate useful strategies and determine how teachers can be best supported in implementing them.


What is known about the topic

• Paediatric Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) can negatively impact on school attendance and educational achievement.
• Liaison between healthcare and schools is important for recovery from ME/CFS.
• There is little qualitative research on the experience of adolescents with ME/CFS in schools.

What this paper adds

• This paper highlights the importance of education and the realistic fears and hurdles for young people with ME/CFS remaining engaged in education and the concerns about the impact on their future.
• Some adolescents with ME/CFS experienced difficulties with school, which they felt negatively impacted on their future potential whereas others described supportive experiences with schools recognising their individual needs and built their confidence in attending school.
• Adolescents and their families felt school support was particularly good when teachers had knowledge of ME/CFS, therefore there is a need to further investigate useful strategies and determine how teachers can be best supported by healthcare professionals in implementing them.

Open access, https://onlinelibrary.wiley.com/doi/10.1111/hsc.13942

 

Zero chance those themes were the result of discussions. This is another paper laundering Crawley's opinions and pretending they came from patients. Everything seems to come from the BPS playbook and patients never talk this way.

Completely useless as usual.

 

This paper is a lot less bad than you'd expect from Crawley. Perhaps the other author takes ME seriously? It's unusual for her that they use the term ME/CFS instead of CFS/ME. The conclusions are reasonable except for "(1) adolescents identified school was important for aiding ME/CFS recovery..." This line betrays the authors' BPS beliefs. Nobody who sees ME as a real medical condition would say that.

 

Was about to say the same: "Liaison between healthcare and schools is important for recovery from ME/CFS." is the big red flag.

If they can't update their terms, and start using better and more appropriate definitions for this then it puts everything else into charade territory. As that is the 'aim' or 'outcome'.

It's a shame that they did not start with truly exploratory research - which began with those who'd been through this 1,2,5,10yrs ago and could talk with knowledge of whether they really did the best thing for their life course (and whether they or their parents would have accepted anything different anyway - because I imagine 'give up your GCSEs and all your friends to save your future' is a bitter pill). This feels like the 'think you've patched them up and taught to manage it' approach of psych type role.

Is 1-2yrs out to recover better long-term than whatever they suggest? Is there a set of criteria that nudge towards this ie severity or type of person? Is anyone measuring health impacts in objective terms? They don't know from the horse's mouth asked independently and answering with the benefit of their experiences in the years after. And they aren't looking for it...

These medics don't know what a 'good/best path' looks like, and it is probably individual - but being informed by other individuals different actual outcomes rather than designated as 'recovery' by data of numbers and 'not severely fatigued a year later' (but were even worse 2yrs later or whatever) needs to be a key part of it.

I guess that is an issue with having pediatric separate from adult - a great excuse to lose those longitudinal consequences.

It's a horrendous age when you think of all the moving parts and gambles involved. Social is important, and school is all about feeling you are going to fall behind and cut off opportunities if you do less well around that age as a standard message. Some of the paths that used to be available for later entry or retake aren't there, are less good or less used now. But there are some.

Teachers/schools should be involved for logistics and some input but are too myopic in position and partisan due to their own obligations to be the only 'voice for their prospects' ie 'telling them their outcome re: 'future' on the education/career front'. Universities, business, other career advisors should all be part of a service that can provide something more proper and specific to the task.

I imagine putting just these 2 elements (school + BPS) instead of school, decent 'career/education advice and planning' something or other, medicine, experience of 'alumni' with similar severities and so on into 'the computer' inadvertently creates a yes man scenario by removing discussion or even imagination that there are alternatives.

 

I can see ways in which it could be - imagine being off work with something you need to rest to recover from; that's hard to do and not stress unless said work can reassure you it will still be there or whatever.

ME can come as a shock, and it can be insidious - taking the textbook off the studious youngster who is determined to 'just get to the end of the year' is, I can imagine, just as likely a scenario.

But that is due to an information gap and reassurances and a big gap in services people could see offering them ways through that might be more successful ie options - then someone can be honest with themselves about how they really feel rather than hopes, dreams, fears influencing health decisions when they perhaps don't need to or isn't the straight line these 2 inputs would suggest.

What is the data they are claiming on recovery - because I've always been intrigued by this claim of 'children are more likely to recover' which seems to be even more certainly put in different sources and pages. Have people looked at this forensically and followed up?

And if they are so interested in school due to education and its relation to 'prospects and future' I'm intrigued if there is not studies on this long-term follow-up then why not?

 

That disproportion between the relevance attributed by funders and journal editors to Bristol's research into ME/CFS and its quality and actual relevance keeps annoying me.

Research funding: Wellcome Trust. Grant Number: 204813/Z/16/Z

Only had a look at the abstract, the references and the introduction.

Introduction:

I realize that the study protocol probably was written before the release of the new NICE guidelines. But it seems to me they should update the reference and include a link (to the current guidelines).
https://www.nice.org.uk/guidance/ng206

References:

Could be interesting to calculate the proportion of references to Crawley's own work.

Two references caught my eye:

(1) One co-authored by Crawley and 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/

From the abstract:

Results:

"[...] 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 [abstract goes without a conclusion] :

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.

Forum thread here.

(2)
Klunder, A., Saab, N., & Admiraal, W. (2022). A teacher perspective on using a hybrid virtual classroom for students with a chronic illness in mainstream primary and secondary schools. Technology, Pedagogy and Education, 1– 16. https://doi.org/10.1080/1475939X.2022.2033824

From the abstract:

"Teachers found the HVC [hybrid virtual classroom] useful to achieve continuity of learning, to support the social well-being of SCIs and to facilitate school re-entry."


Now too knackered to check what UK school authorities advice in general is on teaching children and adolescents who are not able to attend school, including those who won't be able to attend video conferences or only rarely so.

Also not able to check now whether there have been any updates on the telepresence robots (AV1 robots by 'No Isolation' -- forum thread here.

 

Its quite insidious given the situation in the UK has been to take criminal action against parents who keep their children at home when they are too ill to attend school due to ME/CFS. The historical context is that Crawley et el have been forcing these parents to force their children to function normally, to exercise and attend school really until the point where many can't do anything at all. So its not as forceful in its prior applications but its still an insidious paper in its nudge towards school being important to recovery, when clearly that is more than likely doing harm as a significant exertion.

 

Picking out this quote you mentioned from a specialist medical professional: "“It's often school that's the issue because I see so many [children] not recovering within a year, and as soon as they've done their GCSEs, there's a sudden, they start getting better.” (S2-MP14)"

A big point to note is that in almost all schools in the UK the post-GCSE timetable will give more frees/time out of lessons, potentially more freedom from things like sport obligations, and allows an individual to choose their subjects. For many children they also have choices of where they go (although I imagine not all parents are fans of swapping the private school for a local college).

It is also going to be the longest summer holiday they will have - because exams finish 'early' and many can or would find it more accepted to stay off between the end of these and the start of the summer. Imagine what 2months+ proper rest could do short-term in how they 'look' at the start of term. Parents are more likely to give them a break at that point too, just relieved the hard bit has been 'done'

Basically for a condition like ME the more flexibility to manage your own energy is huge - and the student has somewhat more 'control' to be able to do that at that point, with some more than others, even perhaps to the extent of picking subjects that are lower on energy for them (less essays or avoiding field trip ones) and even in a particularly good set-up might be able to see the timetable for the various combination of choices ergo choose based on their rest needs.

This seems like it is ripe for a pretty simple-to-do study, where instead of someone making a throwaway assumption for once even a well-formatted survey could give some sense of whether more flexibility here (which might more naturally range) or 'luck' (in having a school that lets you rest when not in lessons and your subject choices were well-spaced) makes a difference to real outcome.
EDIT: This age group of sixth form seems a good one due to this flexibility giving a bit of variation in what children might taken on, perhaps those who've been ill for a year by that point (so they aren't 'new' to the illness)

But whilst it is coming from a clinic whose background means they potentially see it like a mental health disorder that is 'never cured' and their job to call it recovery is to get to a minor bar of improvement enough to be allowed back into society with apparently a few tools and meetings to prep for their return they will be measuring all the wrong things. Makes me so sad these people might see them turning up and scraping through 2yrs under par to never be the same again healthwise counts as recovery when significant changes and a good plan might have meant these kids got to 21 with so much better health and ergo actual options in their life, and probably better grades. But if presenteeism is what matters..

 

Indeed and agreed -an 'act normal' focus over its impact on actual health, short term pat on back for Crawley getting presenteeism as a sausage-machine approach vs looking at the child's short, medium and long term prospects on decision-making. Manage them as 'a problem' (recovery = them behaving right and getting 'tools' to do so), vs 'understand the problem as an illness'. And all hinges on the myth of 'recover' and what that means. Imagine what it does to someone if this means their horrid illness that leaves them debilitated through all quals, jobs etc has been re-termed to 'being them' and you realise noone followed up on expectation gap between what they might have been capable of (Oxbridge or a doctor or a good ft job - these really aren't 'cloud cuckoo' people know and it means something if they were 15 by the time they got it) vs scrape to 'employed' and that being precarious as noone acknowledges your condition.

The idea this is 'cheap' or 'effecive' as an approach when you look at the numbers (is it 1%?), if this is anywhere near right as a potential guess makes it huge... no wonder there is a productivity issue even if these figures are only acknowledging the 'brightest/best positioned' (and the rest assumed to be just misbehaving or something). If this approach is not 'best long term outcome' for a significant % of these, then it's systemic mismanagement short-term of some of the better potential in a way that at least significantly might crimp their life path vs a different strategy. Ricochet that difference down the chain to those starting with less option/potential and subtract that crimp there etc.

I think that there needs to be a proper safe space created where all these parents and children (including historical in particular) can get together and organise and exchange with the absolute reassurance that 'someone else' isn't part of said group/some measure to ensure they could be honest and it won't affect their current safety and situation. EDITED for clarity.

My gut says that we can't really hear what on earth this has done to all these people, and the magnitude of it because at most points in their lives (if said people with ME go onto have children) they have to be wary of vindictiveness and the power of some of the component agencies/parts involved in this set up. Who wants to upset the school, doctor, social services or whatever who might be in their lives in the present/future.

But that if it is even only a proportion (on basis of their 'fatigue' broad categories) this had these impacts for then this is a large number year on year. And the data collection and organising of this to make it obvious of such situations isn't there.

It feels public inquiry territory, and I suspect the issue with getting it there is - how do all of these people flag it safely, and for those who are milder and scraped something of a life they go with 'don't poke the bear hold onto whatever crumbs' and those more severe are utterly vulnerable to all the labels and risks to freedom and access to essential things.

How do we go about starting to organise these safe set-ups to even bring in those voices? I think some allies are needed who can be trusted just to set up the logistics of it. But there probably are ways and set-ups if we all slowly work together at what 'stages' or 'steps' could make something safe and trusted and start collecting these voices and inputs. Are there other illnesses or other situations/issues where this type of complexity has been worked around and could provide insight?

 

You mean you want to see any evidence?

From the paper:

I think qualitative research as it's done here can't provide evidence for any causation, only can hint at what you should investigate to find out how some things could work or don't work. Which can be very valuable for building and scrutinizing hypotheses -- if you're ready to scrutinize your own ideas, including previous work.