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

Hello,

Thank you for being so welcoming on this forum.

My name is Mariana, I'm currently doing a professional doctorate in Educational Psychology at the University of Bristol (School of Policy Studies), and I am researching the school experiences of teenagers with ME/CFS for my thesis.

A bit about my research: I am using a narrative approach - seeking to privilege the voices of the young people themselves, and explore the meaning they make from their experiences. I am using audio-diaries as a method - as I hope this increases accessibilty as recordings can be made at times that are most convenient for participants, and also to make it more participant-led in terms of how their story is constructed and shared. There is also an (optional) follow up interview.

I am still recruiting and would be delighted to hear from anyone who may be interested in participating or finding out more about this research. I am attaching my recruitment flyer here which includes details of the eligibility criteria.

If anyone would like to email me to find out more about this, I can be reached on mariana.lewis@bristol.ac.uk (or of course in this thread if that's easier). I would love to talk about research in this area more generally too - thank you so much to those who have already signposted me to really useful information and research.

I'm very open to questions and reflections that anyone might have about this research - different perspectives are so important and any feedback is really welcome.

Please do feel free to share this with anyone who may be interested in finding out more about this.

Thank you,

Mariana

 

hi thank you for joining and i hope we can learn from one another.

i cannot read your picture because it is too bright. i don't know what a professional doctorate is. does it mean on a counseling side of ed psych as opposed to experimental ed psych [total guess]?

is ed psych a part of policy school just as a matter of org chart, or is there a policy focus?

we have a best friend forever [not] at bristol. sometimes we make overly elliptical references to things, [which might mislead and can dilute our archive value as a forum.] just know that we are not always talking about you in elliptical references to bristol.

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i would like to ask if you are considering researching undiagnosed pwme [and other diseases]. the experience you seem to be trying to describe might be different.

also whether you are going to tali about complex presentations. m.e. is still not really worked out wrt comorbidities [by any definition] etc.

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i have never told my story. it covers more than only teenage. for health reasons and maybe because not uker i will not participatge. buit there is a lot ic ould tell you. was persecuted to hell starting from my earliest memories in the 1960s and continuing. there was nobody in my world i knew i could trust wrt being sick and the persecution by doctors, family, peers, teachers

i did not know what disease i had, in 2000 bought medical textbooks because doctors were useless, but skipped over "cfs" because it did not match the order of magnitude of scale and scope [harrisson's textbook of internal medicine said something like the treatment was reassurance]. the closest i found was wegener's granulomatosis but that did not seem right either.

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meicc definition carruthers et al 2011 might give you an idea of complex presentations a bit.

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the overall story on this forum is of misopathy and mass human rights violation. i wish you luck.

 

Hi Samuel,

Thanks for taking the time to reply. Apologies firstly for the brightness of the picture - I imagine if it's difficult for you to see that might be the same for others. Thanks for feeding back on this and I'll see if I can adjust it.

I am so sorry to read of your experiences and thank you for sharing them with me. This sounds so harrowing, I can't imagine what it must have been like for you. My main interest in research is how it can be used as a vehicle for social justice, and it is stories like yours (and unfortunately so many others who have shared their experiences with me) that have compelled me to research this topic.

It's a really interesting point regarding the positioning of the Educational Psychology doctorate within the School for Policy Studies - it is quite unique to Bristol, I think. My understanding is that in most other universities where this doctorate is taught it sits within the School of Psychology. We are within disability studies, where there is a strong emphasis on research that explores issues of social justice and 'unheard' voices, focusing primarily (but not exclusively) on qualitative research.

In terms of the 'professional doctorate' - I didn't explain that very well! The only qualification route to becoming a qualified Educational Psychologist is through a 'professional doctorate', which is a sort of 'practitioner-scholar' model. The research component is a signficant part of it, but there is also a practice-based component to the professional training. Educational Psychologists (EPs) work with children and young people from 0-25 in a range of settings, and are usually employed by the LA. Within this role, we work with young people with a range of needs, including medical and health needs. However, there is relatively little focus on this in training. My interest in the school experiences of young people with ME came from this direct work - and I saw first hand how the lack of understanding and lack of support was delegitimising their lived experience, compounding difficulty through discrimination. It is my hope that through my research I can give voice to the lived experiences of young people to raise awareness of this in however small a way.

I hope that all makes sense! Oh, and yes I am aware of very difficult associations with Bristol Medical School. Just to be open and transparent, no one in the Medical School has any involvement or association whatsoever with this research. Thanks for your interest in this - I too look forward to learning from you and others here.

 

There are several members here, including me, whose health problems started in adolescence. I hope you succeed in giving a voice to young patients

This is my concern as well. I think you would first have to create a space where patients feel safe in saying what they really think. And maybe even that is not enough as they might have already learned to conform to some misconception imposed on them. When I fell ill, I was immediately disbelieved and my narrative of feeling too unwell to function was replaced with a "it's school phobia" narrative, and soon after a narratives of "psychological problem and misbehaving". I went to therapy and said what I thought I should say. I made up problems that I didn't have because I believed in the narrative of being a bad person that had to become a better person through working through psychological issues, but there wasn't really much there (I had been very happy when I developed the illness).

 

This.

 

This article is very important. Open access, https://academic.oup.com/bjsw/advance-article/doi/10.1093/bjsw/bcac037/6543955

Full title: FII and Perplexing Presentations: What is the Evidence Base for and against Current Guidelines, and What are the Implications for Social Services?

Abstract

Fabricated or induced illness (FII) and perplexing presentations (PPs) are the terms used by the Royal College of Paediatrics and Child Health (RCPCH) in the UK. FII is presented as if synonymous with Munchausen syndrome by proxy, a rare presentation which is now known in Diagnostic and Statistical Manual of Mental Disorders, 5th Edition as factitious disorder imposed on another (FDIoA). However, FII is not a diagnosis, and the definition is far broader than FDIoA. RCPCH admit that there is a limited evidence base for the prevalence, specificity or sensitivity of FII and the associated ‘alerting signs’, and yet local authorities across the UK have Child Protection Policies developed directly from the RCPCH guidelines.

An increasing number of families of children with neurodevelopmental presentations (such as autism), or presentations of complex or less well-known conditions such as Ehlers–Danlos syndrome, are finding themselves being investigated for FII by Social Services, and consequently labelled as potential ‘perpetrators’ of child abuse, on the basis of FII guidelines. The present article discusses the issues relating to FII and PP, how current guidelines are creating implicit and explicit bias against certain kinds of families and the implications for Social Services.

Open access, https://academic.oup.com/bjsw/advance-article/doi/10.1093/bjsw/bcac037/6543955

I wrote, "Today I posted elsewhere;

'As I was explaining I my last response about my personal family experience, despite my having Advanced Safeguarding training as a specialist teacher of vulnerable ill children (27 years!) , despite advance DRB CRB or what ever it is now called certified, I was not immune or spared suspicion from the paediatric consultant in 2000.

'Safeguarding and it’s training’ in Schools and education Social Service circles is a new shiny burgeoning industry, with lucrative contracts for training role out delivered by private companies who seem insensitive to ME and outside FOI or other checks.

Academies ‘buy' into this as we have seen in Suffolk recently.

For those with complex conditions like ME etc it is a nightmare of huge proportions.

It can affect young people up to 25 with Education & Health Care Plans (EHCP) and after that through challenge and use of the Mental Capacity Act.


I feel this is an important article which needs sharing…….. especially post NICE NG206.


It needs to be flagged with Multi Agency Hubs (MASH) and existing or new Specialist ME Service need to be forceful and proactive in taking a lead again potential for Harms.

We are currently having ongoing dialogues with Suffolk /NE Essex Alliance on this as the new ME Service Pathway and Service Spec works proceeds.


NICE need to take this up with the new work being planned;

NG206(NICE) Implementation statement

- guideline resource and implementation panel (membership from NICE, NHS England and NHS Improvement, Health Education England and, if appropriate, a public health perspective and Skills for Care), for final approval
it will then be published alongside the guidance and made known to Heather Stephens Senior Health Technology Adoption Manager.



We cover this through Community Engagement Partnership work and Healthwatch (previously LINk) before too.
Plus through SEND debates, OFSTED and Department for Education.

Previously since 2008 with Health Overview & Scrutiny, Local Authority and the Strategic Health Authority when it existed.
APPG Forward ME and Gibson Enquiry


How may times does this conundrum and iniquity need reiterating…………?'

 

Thanks so much for your feedback, insights and reflections.

Regarding the retrospective looking back at school experiences from the perspective of a young adult, I attended a webinar last December by an EP who has just completed her doctoral research on exactly this. I don't think her work has been published yet, but her webinar where she presents her findings is available to view here: The retrospective experiences of young adults who had Chronic Fatigue Syndrome - YouTube

Regarding the point about a spoken diary being very effortful - it would be really important to make reasonable adjustments in relation to this such as typing/writing if that was easier? I'd really love to hear suggestions about this.

The point about 'safe space' is so important - and about young people not feeling the need to give the 'right' answer where the power dynamic doesn't feel equal. My thoughts about this is that establishing rapport and trust at the beginning of the process is absolutely crucial - but I fully appreciate that this may not mitigate this entirely. Part of the reason that the follow up interview after making the diaries is optional, is to try to increase the sense of safety in recording reflections in a more private way, perhaps feeling more comfortable that saying them directly to an adult. Potentially this increased sense of anonymity *might* make it feel safer to express things than they might in a more traditional interview format.

 

Thanks for your continued interest. I have now 'touched base" with you outside the forum so look forward to speaking and networking for a common cause.
My son is now 37, nearly middle aged and 38!
Natalie Boulton has recently asked some searching questions about where we as aging and increasingly worn down and ailing parents/carers go from here for our offspring.
We must learn the lessons from the past and stop history repeating itself, and perpetuating itself with the advent of Covid. Attendant pressures, practical and financial on services is a huge worry.

 

> One thing that concerns me is that young people are still developing their understanding of their symptoms, thoughts and feelings, and may not have the vocabulary to describe these other than that fed to them by their doctors and therapists. They won't necessarily have had time to step aside from the narrative they are given by the 'experts' to interpret their experience, so any description of their symptoms and how they feel about them, and their view of their educational experience may be coloured by what they have been told they 'ought' to feel or what is 'acceptable'.

same even having experiened for more than half a century. so i suspect it applies to undiagnosed in general in addition.

simultaneously i dnot trust that anybody believes that i am sick. i don't say things that would not sound believable. etc.

> There is also the problem that more severely affected young people simply won't have the capacity to participate in your study. Talking is cognitively and physically demanding, so making a spoken diary on top of trying to cope with life with ME is a lot to ask. Do you have a way around this, so you can get the full range of severity included in your study?

this is absolutely critical and i didn't even think of it for some reason, severe slip through cracks in almost all research everywhere. [eta this kmikght not be direcly relate dto thse currently attentind mainstream school but might mnatter for retrospective etc.]

> On a more practical note, do you have any more information you can share with us, such as a more detailed set of instructions for participants, a protocol for the study, an analysis plan, and ethics approval. Before recommending someone take part in such a study I would want much more detail about the sort of analysis you intend to make of patients' input.

i think many on the forum would want to ask for similar. please understand [i suspect you do] this is not being difficult. such requests are to me a reflection of the historical experience of this and similar populations, also related to stakeholder participation in research, and of course interest in scientific and academic rigor, which is a strong theme on this forum.

 

one more thing although i think we are really giving you an earful. [that is becase we are interested in your research.]

something occurred to me that would be perhaps tangential to your work but pointing it out so that you know about it.

for these disease populations, i believe it useful or necessary to create a carefully-curated database of stories. for certain criminal prosecutions, and other purposes. this is for persuading orgs to lend their power and also for the prosecutions or other actions themselves. various database projects and collections of stories likely exist. perhaps for nice 2021, perhaps for child protection, maybe david bell's work as a consultant in legal records if they are open, and there are stories on the web.

your stories, if able to be made public, might be another good source with academic rigor/imprimatur.

so idk but some type of at least shared knowledge of one another's existence would be useful.

[i take a human rights perspective [such as but definitely not limited to crimes agianst humanity, right to health, nuremberg doctor's trial, action t4, age of reason style human rights concepts, the "sluggish schizophrenia" industry, eugenics, radium girls, muslomovo, today's attacked disease populations, and misopathy, the sociopolitical phenomenon].]

 

Just a thought... perhaps young people are more used to video culture, but while i would be happy to speak and give an audio recording, i would never want to release a video of me sharing personal things... not enough control as to what happens to it afterwards. I mean of course you know you will be careful with the data, but there are hackers, human error etc. Personally I'd be terrified it would end up on youtube! And that could easily make participants censor themselves. So maybe an audio only option might be good too.

You likely know this already Mariana, but Re: self censorship/safe space/framing their experiences as Drs/therapists have taught them.... I also think it needs to be made really explicit that its ok to say they are ill, to say they are in pain/unhappy etc.

I dont think 'you can say whatever you want/just be honest' will cut it. It needs to be remembered that vague generalised statements are often not understood, even by adults. And avoid all euphemisms.

eg when my Mum had cancer, the nurse said to me 'she is really very poorly now'.... i thought yes i know... but she could still walk to the toilet 10yrs away, still hold a conversations - things i often cant do, so it didnt mean anything to me. It was only later I discovered that what the nurse meant was 'she doesnt have long to live now'.
Why cant people be clear?!

Remember a lot of them will take what you say literally.

 

Brilliantly put Trish!

But this is not how it should be nor within the legal framework for Access to Education.

- 'though I can see as an ed psych your main concern is with those still able to be in education at least to some extent."

A sick person must be assessed and should be protected by an Education and Health Care Plan EHCP - which can only be processed with Ed Pych involvement and assessment.
This will give legal entitlement up till age 25 for those like your daughter or my son.

It replaces the old 'Statement of Special Educational Needs' framework and legal cover. 2010 Disabilities Act also helped.

Of Course LA and Academies are trying to get rid of it and ECHP by 'divesting' ED Psych services and consigning them to self funding entities separate from Local Authority control!
My son deteriorated around 2000 so I applied for Post 16 Statementing and took case to Tribunal to force LA's hand.

The local FE College stepping in with home based tutors under Access Course Framework so 5 young people had their rights acknowledged and covered.
Most importantly, it empowered them, and validated their disability and experience during a critical transition phase to adult life.
For 2 it was life changing an opportunity and restored their self worth.

So I m proud of the fuss I made to enable.
Sadly my son was too ill to go this route but at least he was offered the opportunity.

 

We were very fortunate in Ipswich to have our Support Group set up by LA Parent Partnership officer who had both professional and personal need- son with ME!.
She secured a wonderful Suffolk Ed Psych, Steve Phillips to help make everything 'safe", structured for their needs (for the young people).

He knew all about ME as his wife was severely affected and was also at one point taken an in patient at Romford ME Unit with DR Findley.

Steve also did an important session for Suffolk Doctors and paediatricians 1999? in the lead up to the RCPCH Report......2004

I cannot speak too highly of him!

3Royal College of Paediatrics and Child Health. RCPCH statement on chronicfatigue syndrome. London; RCPCH, 1998.4


Royal College of Paediatrics and Child Health.Evidence based guideline forthe management of CFS/ME (chronic fatigue syndrome/ myalgicencephalopathy) in children and young people. London: RCPCH,December 2004,

http://www.rcpch.ac.uk/publications/recent_publications.html.

 

file:///Users/barb/Downloads/ep46.full.pdf
GUIDELINE REVIEWMANAGEMENT OF CHRONICFATIGUE SYNDROME/MYALGICENCEPHALOPATHY (CFS/ME)JHarryBaumerArch Dis Child Educ Pract Ed2005;90:ep46–ep50. doi: 10.1136/adc.2005.080085