Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study, 2024, Royston et al.

Discussion in 'ME/CFS research' started by SNT Gatchaman, Mar 8, 2024.

  1. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study
    Alexander Peter Royston; Sarah Burge; Ilaria Idini; Amberly Brigden; Katharine Claire Pike

    OBJECTIVES
    Severe myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) in children and young people (CYP) is a little-understood condition which significantly impacts education, development and quality of life. We used data from a population-wide surveillance study to explore the screening investigation, referral and management of suspected cases of paediatric severe ME/CFS.

    METHODS
    A British Paediatric Surveillance Unit (BPSU) study reported cases of CYP with suspected severe ME/CFS between February 2018 and February 2019. Paediatricians reporting cases to BPSU and allied healthcare professionals in two large specialist paediatric ME/CFS centres were invited to complete questionnaires for CYP meeting the surveillance case definition. The study focused primarily on CYP with confirmed severe ME/CFS and the extent to which their care met NICE (The National Institute for Health and Care Excellence) recommendations but also considered separately those with probable or possible severe ME/CFS.

    RESULTS
    This study includes a total of 92 CYP with suspected severe ME/CFS; 33 meeting criteria for severe ME/CFS and an additional 59 classified as probable or possible severe ME/CFS. For 16 possible cases, incomplete investigation to exclude alternative diagnoses prevented confirmation of a severe ME/CFS diagnosis. Only 21 of 33 (64%) confirmed severe ME/CFS cases had been referred to specialist services. The management provided varied considerably between patients and four received nothing at all. Of the management provided, the most frequent approaches were medication (67%), activity management (61%) and physiotherapy (61%). Domiciliary assessments and support, and social services referrals were received by 12% and 6% of confirmed severe cases. Similar proportions of management approaches were seen in probable/possible severe ME/CFS.

    CONCLUSIONS
    Full investigation is frequently incomplete in CYP with suspected severe ME/CFS and recommendations for referral and management are poorly implemented, in particular the needs of CYP who are unable to leave their home might be poorly met.


    Link | PDF (BMJ Paediatrics Open) [Open Access]
     
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  2. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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  3. Andy

    Andy Committee Member

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    "Case definition
    A staged process was used to confirm severe ME/CFS; this required screening blood tests to exclude alternative diagnoses and assessment of symptom characteristics, duration and impact.12 Patients with abnormal blood tests suggestive of another cause for the fatigue were classified as not severe ME/CFS and excluded from further analysis. Urinalysis is recommended within the NICE guideline, but this was removed as a mandatory criterion by the study team because it was so often missed. Patients otherwise meeting the case definition but for whom it was unclear whether they had experienced a significant reduction in activities of daily living were classified as having probable severe ME/CFS. Those meeting most criteria but with incomplete screening tests or information on function were classified as having possible severe ME/CFS.

    In the absence of an official paediatric ME/CFS specialist service specification, a list of specialist services was compiled from services containing a paediatrician and treating CYP that were named either in a list published by Great Ormond Street Hospital for Children21 or the 2018 directory22 of the British Association of Clinicians in ME/CFS. The questionnaire asked whether the CYP had received any of the following treatments/assessments: activity management, cognitive–behavioural therapy (CBT), domiciliary assessment or treatment, graded exercise therapy, medication for symptoms, physiotherapy, social services assessment and support, or treatment from Child and Adolescent Mental Health Services (CAMHS). These approaches were in line with NICE guidelines at the time of study design,23 though more recent guidelines also recommend dietetic assessments for certain CYP and prohibit graded exercise therapy."

    Well, I've read all of that and I'm still not clear on how they define "severe ME/CFS".
     
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  4. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    It's discussed before the case definition section.

     
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  5. Lucibee

    Lucibee Senior Member (Voting Rights)

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    This seems to be an offshoot of the same study @dx-revision-watch.77 mentioned over here: https://www.s4me.info/threads/grade...-gaunt-crawley-et-al.37488/page-4#post-519144

    The 92 patients are the severe cypwME mentioned in this study: https://pubmed.ncbi.nlm.nih.gov/36456114/

    They seem to have forgotten the FINE trial in their round-up of previous attempts to treat severe ME.

    eta: Here is the RCPCH page for this study: https://www.rcpch.ac.uk/work-we-do/...c-fatigue-syndrome-myalgic-encephalitis-cfsme
     
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  6. Dolphin

    Dolphin Senior Member (Voting Rights)

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    https://www.rcpch.ac.uk/work-we-do/...c-fatigue-syndrome-myalgic-encephalitis-cfsme

    Lead investigators
    Professor Esther Crawley
    Centre of Child and Adolescent Health, University of Bristol
    1-5 Whiteladies Road
    Bristol BS8 1NU
    Email: esther.crawley@bristol.ac.uk

    And yet she isn't one of the authors.
     
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  7. Lucibee

    Lucibee Senior Member (Voting Rights)

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    "Contributors: This study was conceived and designed by Professor Esther Crawley and AB [Amberly Bridgen]."

    Authorship is, and should be, about who actually writes the paper. She probably takes the same line as Wessely - already on sooooo many papers that she doesn't need her name to be on any more thank you very much.
     
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    So, this is a study of care providers using a now defunct guideline who show no useful knowledge of ME, severe or otherwise.
    So this is by definition only patients who are under someone's care, which is a minority, and they are overseen using a harmful care model that was deprecated between the time they started the study and publication. It's not accurate to say that 2/3 severe patients are under specialist management, it's only 2/3 who were seen using this clinical pathway by this group. From people who overuse statistics this much, they don't seem to understand that accurate denominators are important when calculating percentages.
    CBT was deprecated. GET is contraindicated. No drug is approved or recommended under either NICE guidelines.

    Somehow the lead investigator of the study is one of the main actors responsible for this disaster, and even they can't spin this in a positive way. But she'll get more funding regardless, once again presenting a new approach that is the same as the old approach.

    This is a level above being a study of failure, it's a study of people who fail so miserably they don't even realize they are failing. It's failure studying itself, and failing to see that it is failing. Remarkable, in all the worst possible ways.
     
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  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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    There could be other reasons why she might not put her name to the paper. For example she might not agree with the contents.
     
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  10. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Having more papers with different author lists creates the idea of a wider movement rather than a single group of researchers pushing forward under the lead of just one high profile academic.

    Also even Prof Crawley must be aware that she has become toxic at least to the patient community so it may be felt that having some papers not immediately attracting the adverse scrutiny arising from being associated with her name is helpful.
     
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  11. bobbler

    bobbler Senior Member (Voting Rights)

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    There is a big and important underlying question too:

    Would any of those who had been harmed and were at the brunt end of all of this feel safe thinking 'yes I'll just send back a questionnaire to Crawley and those who treated me saying how I didn't enjoy it and it harmed me' ?

    In essence this seems to be a culmination of those who picked the only two other viable options - ignore or reply and say what they want to hear.

    There needs, given what we all know has happened with the harm caused by those running the system in the past, to at least be a safe and independent route for collecting data on it.

    It's outrageous that after what has been someone can claim this is 'representative' without 'making it safe' for honest replies.

    I'd actually be intrigued for us to list here what that 'being safe' would require as a brainstorm - thinking out whether any of that data going to those who delivered the treatment could ever possibly be the way given circumstances?
     
  12. rvallee

    rvallee Senior Member (Voting Rights)

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    Similar to Wessely and PACE being his brain-child, having heavily participated in it, but did not put his name anywhere near the published material, then wrote an editorial pretending to be some neutral observer marveling at how great a study it was.

    Given her role, Crawley should have been a lead investigator on Clock, and yet she wasn't. Now this. And she wasn't on the Magenta paper either. It's clear that she has lost a bit of influence. If only the money could stop flowing to her now.
     
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  13. Trish

    Trish Moderator Staff Member

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    It may be that, like Wessely, she has moved on to other things. ME/CFS is only one small part of her work as a pediatrician.
     
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  14. Sid

    Sid Senior Member (Voting Rights)

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    She is an author on the Magenta paper.
     
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  15. Amw66

    Amw66 Senior Member (Voting Rights)

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    She's simply following the money
     
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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    I mean she wasn't lead author. She has basically been the go-to expert on pediatric "chronic fatigue" for decades, and was probably lead author on more papers than any other research has authorship. She wasn't on Clock either, instead it was some other pediatrician who never did any research on anything to do with ME. I don't know what it means exactly, but it definitely means something.
     
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  17. Amw66

    Amw66 Senior Member (Voting Rights)

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    Plausible deniability ?
     
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  18. Sean

    Sean Moderator Staff Member

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    Spreading the blame?
     
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  19. Dolphin

    Dolphin Senior Member (Voting Rights)

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  20. Amw66

    Amw66 Senior Member (Voting Rights)

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    Given

    that social services involvement is usually a negative experience and can result in children being removed

    That specialist ME/CFS services are usually ( and at 2018-19) not a good thing

    I wonder at the framing of this .

    The problem is not simply availability, it's what's offered

    The provision of GET to the severe is simple malpractice

    ETA , GET is still there , it's simply been rebranded
     
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