Closed 2022 UK Recruiting: narrative inquiry exploring the school experiences of teenagers with ME/CFS (doctoral research)

Hi everyone,
Can I just say, I am totally overwhelmed (in a good way!) by how much interest and engagement there has been on here regarding my research - thank you all so much. I am enjoying the 'bear pit!' I am so sorry I haven't replied to all posts individually. I have read all of them and am processing and reflecting on everything that you have all shared.

Just a couple of very brief points in relation to a couple of the questions/notes in this thread. Regarding the recording of diaries - interestingly originally I was planning on doing video diaries having assumed (wrongly as it turned out) that this would be a medium that young people would find more comfortable. When I sought feedback from young people before submitting my study for ethics approval, overwhelmingly and almost unanimously, the responses favoured audio-diaries over video diaries. So I changed it!

Regarding anonymity - it is a strict condition of my ethics approval that no identifying information will be included in the write up. There are also very strict protocols around data protection. @JemPD - absolutely regarding the explicitness of safety around self-expression @Suffolkres I am so delighted to hear of positive experiences of working with EPs!

I am juggling the other bit of my job this week so apologies in advance if I don't reply quickly to all your comments - and just to reiterate my thanks again for all your feedback, insight and advice that you have taken the time to share.

 

Excellent info thanks.

The above link by @Suffolkres only went through to a generic RCPCH page today, so I searched for the 2004 document . Hopefully this works:

http://rcpch.adlibhosting.com/files...d ME in Children and Young People 2004-12.pdf

 

I was involved with the AfME " educate ME" project which sought to improve educational experiences for those with ME.

Part of the process was an anonymous survey monkey online survey , however participants could provide contact details if they so wished.
Even this proved too onerous for my daughter and others - there was I believe a bit of " what am I supposed to say" , and asking for description/ inviting fuller text in places rather than simple yes / no with option for additional info caused anxiety. It was simply too much .

The gist of this was to enable young voices to be heard but also to be able to take on board issues when looking to provide info for teachers .

There were a variety of experiences documented , from a very few good accommodations to heartrending episodes.

AfME did not have a tickbox to enable publicising of responses , but they were able to follow up in a few who gave details. It may be worth getting in touch and gaining feedback.

One of the hardest parts for educationalists to accept was that sometimes no educational input is a necessity for health.

Please note that this was Scottish based , so a different educational system ( no ECHP) but still the generic issues re school phobia and safeguarding.

Here GIRFEC ( get it right for every child) , which uses ACEs a lot has perhaps made things more difficult for those with misunderstood illnesses.

25% group, (ME charity) /, provided support for the online( and paper copy option) survey for the Priority Setting Partnership for ME/CFS and could perhaps provide insight in how to reach the most vulnerable as these voices are seldom heard.

 

A quick thought , the info pack pulled together for teachers could be applied for any chronic illness

Perhaps the most disheartening thing is that this was simple common sense suggestions , not rocket science. The kind of thing that anyone with experience of chronic illness could have pulled together, but it was done from children / young people up and not educationalists down.

Education seems to have it's own silo for looking at this, remove buzz words and apply common sense re power asymmetrics and teenagers and out of the box thinking is not very out of the box at all.
It is also very clear that there is a huge gap between hearing and listening .

In illness language has a lexicon which is learned and you use what you are given until either it no longer applies or you learn other descriptions.

Children who have clinic experience will use a described vocabulary - perhaps this is why " fatigue" pops up in papers . Fatigue is completely the wrong description- noone drills down.

 

Published thesis:
https://www.s4me.info/threads/a-nar...g-with-me-cfs-2022-lewis-dedpsy-thesis.31964/