“She used to be Tigger and then she was Eeyore”: young people, CFS/ME, exploring predictors of recovery, 2021, Clery, Crawley et al

Sly Saint

Sly Saint

Senior Member (Voting Rights)
P1 “She used to be Tigger and then she was Eeyore”: A qualitative study with children and young people with CFS/ME, exploring predictors of recovery and future treatment needs

Philippa Clery, MBBS BSc, Jennifer Starbuck, BSc DClinPsy, Amanda Laffan, BSc DClinPsy, Esther Crawley, MBBCh PhD

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Abstract
Introduction
Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is relatively common and severely disabling. At least 15% of children do not recover by 12 months. We do not know why some children recover and others do not. This study aimed to explore the barriers to recovery experienced by adolescents with CFS/ME.

Methods
I recruited adolescents (aged 11-17 years old, with CFS/ME, who were still disabled by CFS/ME after 12 months of treatment), their parents and specialist healthcare professionals were recruited from a single specialist CFS/ME service in the UK. I conducted semi-structured interviews and focus groups to explore views on treatment received including barriers and facilitators, as well as views on their future. I used thematic analysis grounded in the views of the patients to identify patterns (themes) in the data.

Results
I recruited 12 children and young people, 11 parents and 7 specialist healthcare professionals. The following themes were identified (with barriers and facilitators apparent in each theme): 1. “awareness and support” from CFS/ME services, GPs, schools and family. Poor awareness resulted in increased time-to-diagnosis, school disengagement, stigmatising experiences, and significant stress for children and parents; family support, school understanding, and validation from the service was a ‘life saver’. 2. “CFS/ME is bigger than the fatigue” described the importance of managing CFS/ME as a ‘long and hard’ chronic illness with secondary health, social and educational consequences. Participants called for holistic therapies that focus on the broader definition of recovery and facilitate re-integration into ‘normal life’. 3. “Balancing routine and control in adolescents”: Children differed on whether routines and pacing were helpful or exacerbated low mood. 4. “Individualised” treatment was important: treatment combinations were helpful in different ‘phases of recovery’, which varied depending on social context, motivations, school input, and co-morbidities.

Conclusion
Adolescents identified common facilitators and barriers to recovery and a desire for treatment that takes social factors into account, with a holistic approach using a broader definition of recovery. Children and parents identified a need for better awareness, communication and integration within and between services, including GPs and schools."

https://academic.oup.com/bjsopen/article/5/Supplement_1/zrab032/6217167

 
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Crawley has recently been involved in a number of studies involving children who have been treated by the Bath clinic but still have persistent ME/CFS.

Presumably this significant preselection of subjects, and use of children who have had significant intervention based on the philosophy of one clinic and who themselves (or their parents/guardians ) still regard researchers linked to that clinic as a good way forward, will impact on outcomes measured by questionnaires.

Given concerns about Crawley’s methodologies in patient groups nationally is this recycling of her own patients a response to her historic recruitment difficulties. At least I assume such problems given some of her previous apparent research malpractice involved covertly subsuming pilot study subjects into full trial cohorts.

Is it relevant to ask if any of these subjects, still unrecovered for the purpose of later trials, have been scored in earlier studies as evidence for the success other interventions?
 
MSEsperanza said:
I wonder why a journal for surgeons published this.
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Uh. Good catch. Maybe they can't publish their junk in normal journals anymore so they have to do stuff like publish in their own (like the latest Wessely paper) or random journals. Interesting, this really has nothing whatsoever to do with the journal.

I wonder if it's worth asking awkward questions, @dave30th?
 
Trish said:
I dont think I have seen an abstract written partly in the first person before.
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Yes, that struck me as very odd and a basic flaw.

MSEsperanza said:
I wonder why a journal for surgeons published this.
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Is the first author a surgeon, MBBS?
Maybe she was hoping to get something published from the "don't operate on kids with acute appendicitis" study that EC was involved with, but that was a dead end, so EC persuade her to switch tracks.
 
since philippa claims that she did all the work why are the other names attached . i see many papers that do not seem to require a lot of effort but they always have multiple names what exactly are these added names doing running for cups of tea proof reading or just guiding the lead author into the right conclusion .
 
MEMarge said:
Is the first author a surgeon, MBBS?
Maybe she was hoping to get something published from the "don't operate on kids with acute appendicitis" study that EC was involved with, but that was a dead end, so EC persuade her to switch tracks.
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I think all doctors in the UK degree is called MBBS. Surgeons would have extra post grad qualifications in surgery.
 
It seems like the text of a poster presentation was published?

It reads:
Adolescents identified common facilitators and barriers to recovery and a desire for treatment that takes social factors into account, with a holistic approach using a broader definition of recover
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That would really surprise me. A holistic approach, taking social factors into account and a broad definition of recovery seem more like the things the researchers want the patients to say.

I would guess that patients simply want a treatment that works and has few side effects.
 
Michiel Tack said:
It seems like the text of a poster presentation was published?

It reads:

That would really surprise me. A holistic approach, taking social factors into account and a broad definition of recovery seem more like the things the researchers want the patients to say.

I would guess that patients simply want a treatment that works and has few side effects.
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I assume that's the researchers' interpretive paraphrasing of what the kids said.
 
dave30th said:
I assume that's the researchers' interpretive paraphrasing of what the kids said.
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If a doctor / medic uses language to describe an illness children experience, children will adopt the same language until it no longer matches their experience ( and their constructs move) / their experience widens and so does the vocabulary.
That's basically how children learn .

This is why AfME advise that children describe the illness differently. They use the language they are given .

That makes it more insidious- it could be learned language - and this is providing the " lived experience " voice.
 
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