Open 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. Interviews will offer flexibility to accommodate for individual needs (e.g. in relation to the timing and length of interviews).

If you have any questions or would like to discuss this opportunity, please do reach out.

Approval for this study has been granted by the Tavistock and Portman NHS Foundation Trust.

Thank you!

Ellen Cookson
Trainee Educational Psychologist, Tavistock and Portman NHS Foundation Trust
Researcher contact details: ecookson@tavi-port.nhs.uk

Supervised by: Dr Hannah Lichwa, Professional and Academic Tutor

 

Dear Ellen,

It is good to see people wanting to take an interest in ME/CFS. Finding out more about school problems sounds like a useful thing to do.

Could I ask, however, for you to put in some ordinary speak words what specific things you think might come out of it? Enhancing educational experience may sound good on a project title but what's in it for the people who are ill in real life terms?

Or to put it another way, if you want people to help by giving their ideas it is only fair for you to give them yours first. What are your hopes for the project - in the sort of terms you might discuss with someone you didn't know on a bus?

As a scientist my main concern would be that this forum, although a very rich source of information, is not going to provide a representative sample. Not that many members are in the age range. But there may be some.

How familiar are you with the literature on what it is like to be a young person with ME/CFS - have you read Jessica Taylor-Bearman's books for instance?

 

Ellen, welcome and thank you for setting out your information sheets and identifying your supervisor’s details. It is surprising how many researchers fail to provide this basic information when posting about their proposals here.

I would welcome more information on how you would support the very severe to participate.

Have you discussed your programme with ME/CFS patients or patient groups? Though obviously on a much larger scale than a PhD study, the genetic study Decode ME is a brilliant example of the value of patient participation right from the planning stage, whereas say the MEA funded PROMS study is an example of how a study, despite a genuine attempt, is struggling to make effective use of patient participation. Have you contacted the Thymes Trust, which does a lot of good work here in the UK, especially in relation to helping children and families deal with inappropriate child protection actions?

 

@Ellen

* The pictures to the left of the Participant Information sheet are pretty confusing, and obscure. You may not know that some/many people with ME (pwme) have great trouble processing complicated or messy visual information, and find it cognitively demanding. One of the Case definitions of ME lists 'Inability to separate relevant from irrelevant visual information' (I paraphrase). That's from the Canadian Consensus Criteria (the CCC). The pictures look obscure in meaning and, with the exceptions of your picture and the Zoom illustration, it would be better to simply use a colored dot (for example) to indicate each new point.



* 'I will tell you more about the research and answer any questions that you might have.'

It would be far better to tell the participants more about the research *before* the Zoom interview. That would give participants time and space to digest the information and consider their questions. Putting the 'telling the participants more about the research' into the zoom session definitely risks overloading them cognitively in what would inevitably be a pretty packed session. In fact giving full information about the research should come way before the pwme even agree to take part in it, before the zoom session definitely.


* How aware are you of the current schools' policies on attendance, which can be draconian, and harmful especially for children/youngsters with long term illness, who are labelled as non-attenders rather than as sick.




This is copied and pasted from a previous post of mine on a different thread:

https://www.s4me.info/threads/impac...n-among-young-adults.38156/page-4#post-528138



'..... I have seen very insightful accounts by adults' with ME about their experiences as children/youngsters with ME. Unfortunately those accounts often include the very real pressure families are under from schools re attendance, and from social services. Families, mothers especially, being suspected of encouraging, inducing illness in their children and referred to social services for investigation, apparently 1 in 5 families of children with ME.

'Carol Monaghan MP - Children with ME - House of Commons ME debate'

https://www.youtube.com/watch?v=5HzZ4U6yU6o

Some important Reports by the ME charity for children/young people, The Tymes Trust:

'False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)'

First published in the peer reviewed journal Argument and Critique

https://www.tymestrust.org/pdfs/falseallegations.pdf



'The Forgotten Children - A Dossier of Shame' 2003

'Tymes Trust presented this document to the Prime Minister on the 12th of May 2003. It details shocking statistics the Trust has collated from information supplied by families of children with ME.'

'Tymes Trust has evidence that the very systems set up by the government to help sick children and young people are being interpreted in ways that either ignore children with ME, or threaten, bully and intimidate them'

https://www.tymestrust.org/pdfs/theforgottenchildren.pdf



Further publications and Reports by the Tymes Trust.
https://www.tymestrust.org/tymespublications.htm

https://www.tymestrust.org/



2024: accusations of child abuse against parents of children with Long Covid (also mentions similar against families of children with ME):

https://www.s4me.info/threads/artic...-fii-accusations-in-me-cfs.38203/#post-528131

.



* 2 additional accounts by pwme who developed ME as children. Both are WELL worth reading.


1/ Shannon Dabson's account was presented by her to the Royal Society of Medicine conference on ME 2009, Hearing the Patient's Voice. Shannon is gifted at maths, was mainly housebound, and achieved a GCSE maths at the age of 12. Her account is well worth reading to identify how schools should NOT treat a young person with ME.

https://www.tymestrust.org/pdfs/shannendabsonrsm.pdf

'In school I am currently in the bottom set for everything and have been told that I won’t be allowed to sit my English Literature GCSE because my attendance isn’t good enough. If I can take a GCSE maths aged 12 why can’t I at least try Shakespeare? I might not like it or I may decide it is not my strength. Surely, like everyone else, I’m entitled to give it a go? My parents say I’ll take it - the school just don’t know it yet! It’s this attitude that spurs me on to prove them all wrong. They should be offering me more support not less. Last year none of my maths books were marked! All that effort for nothing! Teachers hear I have ME and think I’m lazy or schoolphobic. They think I can’t be bothered to go to lessons where I have to climb stairs. They amaze me with their ignorance. I used to try to get through to them but some are too set in their ways and won’t change.

My friend at school was diagnosed too. She does far more school hours than me but then relapses. She gets fed up with no one listening to her. She’s struggling to please everyone else and making herself miserable and ill in the process. She has no control over what she does.'

'The school wouldn’t tell us from one term to the next what they’d be studying to allow me to prepare or for Mum to stock up at the library. Everything was a state secret and only those with good attendance were let in. Friends were told NOT to lend me their homework sheets or newsletters in case I copied up what I’d missed! They were deliberately sabotaging my education. They’d make out they knew what was best for me and would try to overpower me. I knew they were wrong. They’d have me carrying the classes’ heavy books and were supposed to let me go if I held up a red card. They’d stall, ‘after 5 minutes Shannen’, ‘after break Shannen’, ‘when your Mum gets here Shannen’. I knew they were being dishonest. I was nervous of them as I knew they didn’t believe how ill I was. They’d make me get up and down for prayers and people coming in and my head was swirling. It was torture. I’m sure they treated me badly just because they didn’t believe me.

Soon after this I found the doctors had missed a serious heart condition. The teachers treated me even worse as if I’d got it just to make them look bad! The special needs teacher didn’t bother to look up any of my ME complications on the internet. My class teacher was asked if she understood the problems associated with ME and the other staff said that they refused for her to answer that question! Yet I was under her care! I was effectively excluded for a while after this.'



2/ 'Before The Truth Can Get It's Boots On', by Lorelei Hatpinwoman. Lorelei developed ME at age 12. This long article/essay is beautifully written, incisive, and very well referenced.

https://loreleihatpin.substack.com/p/before-the-truth-can-get-its-boots

.

 

I actually wonder whether you might not get more useful information @Ellen by just asking your questions openly to the forum so that people can give their views on them as and when they like without any pressure. I think you are likely to get a much more balanced view that way and it would be much more community-inclusive.

 

Yeah well you needn't put it like that need you!

What about 'I consulted a large patient community website and concluded that a much more egalitarian and co-operative approach to gathering information would be to not make use of the stressful and artificial format of a video interview and solicit answers to questions in such a way that patients could consider and discuss them at length.'

What is the point of acquiescing to 'standard' research methods if they are actually substandard.
Real research doesn't follow Procrustes. If the system is so ossified that it does not allow imaginative solutions then I would advise getting out and trying something else.

 

Hi Ella and welcome to S4 I'm too ill to say much but i did want to draw your attention to the issue of PwME struggling to absorb and respond to questions in real time.
I wrote a bit more about this problem in this post on another thread about a similar research project (similar methodology anyway). Actually i think that whole thread might be helpful for you to read with tips etc.
But my post is here Open - impact of chronic fatigue syndrome CFS/ ME on identity construction among young adults | Page 3 | Science for ME (s4me.info) post #43

Good luck with your project

 

It sounds like you could learn a decent amount about supporting young people with ME/CFS from this study. Obviously it's generally difficult to accommodate because without energy you can't do anything, but I'm sure a decent number of people out there will be able to explain how they managed to do their schoolwork in a way that's mostly compatible with pacing.

 

I'm not sure how many people in that age range there are on this forum though? I got the impression we're mostly older!

@Ellen thank you for sharing. I imagine that there will be many young people wME out there who would appreciate the opportunity to have their voice heard and to feel that their experience is contributing to useful research. I think your research question is a valuable one. As a former teacher and current pwME, I think schools and local authorities could do with more information and understanding of the condition and how to support young people (although funding is of course a huge issue in terms of what support can actually be offered). I've heard about distance learning avatars being used by some children with health issues and wondered if that might be useful for young people wME (or if it would actually make the feeling of isolation and otherness worse). The DfE have recently spent a lot of money on 'Oak Academy', an online teaching platform that I imagine that a lot of schools will sending ypwME to. However I think that a) the lessons are not particularly interesting, b) it's not personalised and c) that children with ME may need a curriculum that is streamlined and broken down into smaller chunks rather than just being given the usual curriculum to follow at home. Those are just my thoughts!

I imagine you will be focusing mostly on those who are mild/moderate as they are more likely to have been able to continue with some form of education. However, I hope you are also able to speak with some severe patients as they are often left out of research and suffer the most in terms of isolation.

Good luck!