Thesis More than meets the eye: An exploration of secondary school experiences and support for children and young people with ME/CFS, Cookson, 2025

Dolphin

Dolphin

Senior Member (Voting Rights)

More than meets the eye: An exploration of secondary school experiences and support for children and young people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Ellen Cookson

A thesis submitted for the degree of Doctorate in Child, Community and Educational Psychology

Tavistock and Portman NHS Foundation Trust
University of Essex
May 2025

Abstract

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, chronic medical condition affecting up to 2% of secondary school students in the UK.

Characterised by debilitating fatigue and significant impairments in physical and cognitive functioning, ME/CFS can significantly affect school functioning.

Despite this, UK-based research centring children and young people’s (CYP’s) perspectives on their school experiences, particularly regarding support, remains limited.

This paper explores the secondary school experiences of CYP with ME/CFS, including experiences of support, to gather insights into how educational professionals can better support them.

Retrospective semi-structured interviews conducted with six CYP were analysed using Reflexive Thematic Analysis.

Findings are situated within an ecological context, acknowledging how education systems and societal attitudes influence experiences.

This research highlights that there is more than meets the eye within the school experiences of CYP with ME/CFS.

Physical, academic, social and emotional challenges make school participation hard work, requiring flexible and tailored adaptations to promote equity and inclusion.

Whilst physical challenges are typically well recognised and supported, CYP often feel their social and emotional needs are overlooked and unsupported.

A pervasive sense of invisibility shapes both their school experiences and support.

Systemic barriers, including stigma, rigid systems, competing priorities, and power imbalances, further hinder access to timely, person-centred support in school.

Relationships and resilience are key in supporting CYP in navigating the demands of secondary school with ME/CFS.

This research amplifies the voices of CYP with lived experience of ME/CFS and highlights opportunities for more equitable, inclusive and holistic support.

Findings informed adaptations to Carr’s ‘BASE’ model of inclusion and the development of a toolkit for school staff, Educational Psychologists, and school systems supporting CYP with ME/CFS.

These contributions aim to improve understanding, attitudes, and support structures, ultimately enhancing experiences for CYP with ME/CFS in secondary schools.
 
Dolphin said:
Relationships and resilience are key in supporting CYP in navigating the demands of secondary school with ME/CFS.
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I have no idea what this means. Resilience is commonly used in work settings where bullied workers are expected to be more resilient in coping with the bullies, rather than removing the bullies and providing better management.

Dolphin said:
Characterised by debilitating fatigue and significant impairments in physical and cognitive functioning, ME/CFS can significantly affect school functioning.
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No mention of PEM. Surely that's key to understanding the young person's needs.
 
Thread when she was recruiting:
Ellen

Open Thread 'UK: School Experiences for Young People with ME/CFS'

Hello!

I’m looking to recruit participants in the UK aged 16-25 who had ME/CFS during secondary school.

I am a Trainee Educational Psychologist completing my doctoral research project exploring experiences of support in secondary school for those living with ME/CFS. This research is important to inform how education professionals can support and enhance educational experiences and wellbeing for young people with ME/CFS in schools.

The study involves remote interviews (on Zoom) for up to 1 hour with participants aged 16-25 who had a diagnosis of ME/CFS during their secondary education...
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Dolphin said:

More than meets the eye: An exploration of secondary school experiences and support for children and young people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Ellen Cookson

A thesis submitted for the degree of Doctorate in Child, Community and Educational Psychology

Tavistock and Portman NHS Foundation Trust
University of Essex
May 2025

Abstract

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, chronic medical condition affecting up to 2% of secondary school students in the UK.

Characterised by debilitating fatigue and significant impairments in physical and cognitive functioning, ME/CFS can significantly affect school functioning.

Despite this, UK-based research centring children and young people’s (CYP’s) perspectives on their school experiences, particularly regarding support, remains limited.

This paper explores the secondary school experiences of CYP with ME/CFS, including experiences of support, to gather insights into how educational professionals can better support them.

Retrospective semi-structured interviews conducted with six CYP were analysed using Reflexive Thematic Analysis.

Findings are situated within an ecological context, acknowledging how education systems and societal attitudes influence experiences.

This research highlights that there is more than meets the eye within the school experiences of CYP with ME/CFS.

Physical, academic, social and emotional challenges make school participation hard work, requiring flexible and tailored adaptations to promote equity and inclusion.

Whilst physical challenges are typically well recognised and supported, CYP often feel their social and emotional needs are overlooked and unsupported.

A pervasive sense of invisibility shapes both their school experiences and support.

Systemic barriers, including stigma, rigid systems, competing priorities, and power imbalances, further hinder access to timely, person-centred support in school.

Relationships and resilience are key in supporting CYP in navigating the demands of secondary school with ME/CFS.

This research amplifies the voices of CYP with lived experience of ME/CFS and highlights opportunities for more equitable, inclusive and holistic support.

Findings informed adaptations to Carr’s ‘BASE’ model of inclusion and the development of a toolkit for school staff, Educational Psychologists, and school systems supporting CYP with ME/CFS.

These contributions aim to improve understanding, attitudes, and support structures, ultimately enhancing experiences for CYP with ME/CFS in secondary schools.
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Thus sustantiates all my 30 years involvement and experiences, both as a parent carer and professional in Alternative Provision for sick kids..
 
Utsikt said:
That’s not my experience. The physical challenges are dismissed as psychosocial and not supported at all.
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And when they are actually acknowledged, the support is always minimal and, just like here, focused on 'resilience' and 'bravery', and so on. Social needs can't be realistically supported at the best of times, and emotional support is absolute garbage because they take too much effort. Only some of those are partly supported some of the time, leaving a huge number where no support is given at all.

This is a very common comment when the subject is discussed on general forums like reddit, someone makes a comment how "at least when you have a physical disease you get real help" is always met with loads of "wait you guys are getting help?!". And what they mean by that is the physical support, the ability to simply function, they're not even commenting on the social or emotional needs because there's no point, there isn't any.

This is one of the indirect problems with how what has been categorized as mental health may not get all the support that it needs, but the physical (not dualists, though) is "well recognised and supported". They are not. You can ask the people who need that help, they will all say that it's not. But they say it anyway, patting themselves on the back and handing out participation trophies, which has one major outcome: they simply stopped trying a long time ago.

Because why try to do something better when you're already doing it well enough? Doesn't matter that it's false, all that matters is that no one can do anything about it. It's the same mindset behind the decades-long obsession with CBT for everything. Why bother doing something useful, when you already got it? Doesn't matter that it's false. It never matters. As long as boxes are checked and the appearance of professionalism is good enough, the rest is irrelevant.
 
Utsikt said:
That’s not my experience. The physical challenges are dismissed as psychosocial and not supported at all.
Click to expand...
I think things like workload demands haven’t been classed as physical but under one of these other titles

Which yes is either misleading or deliberately misunderstanding the issue as being undermining of physical limitations by interpreting the impact of overwork as something else etc
 
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