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Experiences of pain in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a single-centre qualitative study, 2022, Crawley et al

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Sly Saint, Feb 20, 2022.

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  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Abstract
    Background Moderate to severe pain affects up to two-thirds of children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and is associated with worse fatigue and physical functioning. This research aims to gain a greater insight into pain experienced by these children.

    Methods Thematic analysis of qualitative data from semistructured interviews with 13 children with CFS/ME (mean age=15.3 years, 67% female) was completed.

    Results Thematic analysis enabled construction of three themes: children’s wide-ranging experiences of pain, negative impact of pain and lack of effective treatment for pain and nine subthemes. The first theme demonstrated highly varied pain experiences, ranging from ‘like [being]… on fire’, like ‘being stabbed’ to ‘like…lead’. Children experienced pain in multiple sites and with wide-ranging frequency and severity. The second theme highlighted the profound negative impact of pain on multiple aspects of children’s lives. Physical activity was severely impaired; some children ‘couldn’t leave bed’ or ‘couldn’t…brush [their] own hair’. Abdominal pain meant some would ‘go…days without eating’. Pain substantially impacted on mental health, leaving children feeling ‘agitated’, experiencing ‘really bad panic attacks’ or making them ‘[want to] breakdown’. Children felt they ‘can’t do the things that everyone else can do’, had ‘missed out’ and are ‘behind everyone’. Some avoided socialising as they ‘don’t want to stop everyone else’. The final theme demonstrates the absence of adequate treatment for pain, with participants reporting ‘nothing has ever really got rid of it’ and only ‘slightly [takes] the edge off’ and other experiencing side effects.

    Conclusions Pain in paediatric CFS/ME is highly variable, common and often results in severe physical limitation and poor mental health. Effective treatments for pain represent an unmet need.

    https://bmjpaedsopen.bmj.com/content/6/1/e001201
     
    oldtimer, alktipping, shak8 and 2 others like this.
  2. Sean

    Sean Moderator Staff Member

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    The final theme demonstrates the absence of adequate treatment for pain, with participants reporting ‘nothing has ever really got rid of it’ and only ‘slightly [takes] the edge off’ and other experiencing side effects.

    Gee, I can't imagine why that is.
     
  3. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Is it me, or do studies like these (Skype-interviews with 13 patients) seem more like a high-school project than actual research by academics?
     
    Moosie, Grigor, lycaena and 27 others like this.
  4. CRG

    CRG Senior Member (Voting Rights)

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    Another non paper from the Esther Crawley led "Centre for Academic Child Health" at Bristol Uni. recipient of multiple NIHR grants: https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406657 although in this case no external funding is acknowledged - so ultimately paid for out of student fees.

    Small detail in this paper: Received 24 June 2021. Accepted 8 September 2021 - which allowed the authors to get away with referencing NICE 2007, and not NICE 2021 !
     
    Moosie, FMMM1, alktipping and 4 others like this.
  5. Trish

    Trish Moderator Staff Member

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    No it's not just you. I am repeatedly shocked by the low standard of psychosocial research coming from universities. Presumably someone will be awarded a postgraduate degree for doing this stuff.
     
    Moosie, EzzieD, FMMM1 and 12 others like this.
  6. NelliePledge

    NelliePledge Moderator Staff Member

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    So these kids under the ‘care’ of their services , have they considered what the comments from the kids actually says about the effectiveness of their work. Perhaps it should be reclassified as service evaluation rather than research. :whistle:
     
    EzzieD, lycaena, Simbindi and 10 others like this.
  7. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    On the plus side the methodology could help to enable those with a high degree of disability to participate.

    My issue is that there is no attempt to objectively measure the effect of the intervention (Actimetry - FitBit or whatever). Had they established a pre-intervention baseline and then measured the baseline post intervention then they could have established whether the intervention worked, whether any improvement was sustained ++++.

    The cynic in me thinks that if they had used objective outcome criteria then they wouldn't be able to continually repeat the experiment ---- look at the funding Professor (sickens me to write that title) Esther Crawley has received for running the same study in vulnerable adolescents - that wouldn't be possible if the Department of Health and Social Care (via NIHR) had a policy of requiring (where possible) objective outcome criteria in NIHR funded research.
     
    cfsandmore, Sean, Amw66 and 1 other person like this.

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