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Adolescent’s descriptions of fatigue, fluctuation and payback in CFS/ME: interviews with adolescents and parents, 2018, Crawley et al

Discussion in 'PsychoSocial ME/CFS Research' started by Amw66, Dec 5, 2018.

  1. Amw66

    Amw66 Senior Member (Voting Rights)

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    New paper - has a number of red flags.

    Focuses on fatigue description and " payback" as a description for PEM without much definition. Questionnaire based, pre diagnosed
    Mild/ moderate but not housebound
    I don't know if any comorbidities (OI, EDS etc) have even been thought about

    I have not had time to dip into to it, but given questionnaire basis and age group involved have some concerns re " telling people what they want to hear to make them go away", which may be unfounded.
    Heterogenity of illness highlighted

    https://bmjpaedsopen.bmj.com/content/2/1/e000281.info
    https://bmjpaedsopen.bmj.com/content/bmjpo/2/1/e000281.full.pdf
     
    Last edited by a moderator: Dec 5, 2018
  2. Cheshire

    Cheshire Senior Member (Voting Rights)

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    Abstract:
     
    Last edited: Dec 5, 2018
  3. Barry

    Barry Senior Member (Voting Rights)

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    My - isn't that insightful.
     
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  4. obeat

    obeat Senior Member (Voting Rights)

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    Does anyone outside the UK still consider the BMJ a high quality journal? It seems to have very low standards these days. I strongly object to the term " payback". It's loaded with blame.
     
    Last edited: Dec 5, 2018
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  5. Amw66

    Amw66 Senior Member (Voting Rights)

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    I find it disheartening that after so many years of adolescent research, that researchers and those treating the illness have not got to grips with the basics.
    It is not fatigue, it is fatiguability that distinguishes things; moreover fatigue may not be the most debilitating of symptoms for many, but seems to be the most focused upon. Everything else is treated as " other", when it could be intrinsic, could be another diagnosis, could be treatable.....
     
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  6. Trish

    Trish Moderator Staff Member

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    Conclusion. Some kids are sicker than others.
    Wow, what a revelation.
     
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  7. Amw66

    Amw66 Senior Member (Voting Rights)

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    Note semi structured interviews - the framing of the topic would be interesting to see and may account for the fatigue focus and any introduction of bias; is there any way to access this ?
     
  8. Trish

    Trish Moderator Staff Member

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    That suggests to me they are overdiagnosing - including kids who don't have ME. Tiredness on its own is not ME.
     
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  9. Amw66

    Amw66 Senior Member (Voting Rights)

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    Exactly this.....that's also why sleep hygiene, GET and CBT work....
     
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  10. Esther12

    Esther12 Senior Member (Voting Rights)

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  11. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Questions:

    1. Was this group recruited from the same group that Crawley treats?
    2. If so, why would we trust subjective answers from anyone in the group?
     
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  12. Andy

    Andy Committee Member

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    It says in the small print, "Patient consent: Not required.". I'm surprised that no consent was required, can anybody offer an explanation why it wouldn't be needed?
     
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  13. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    Surely this is just yet more Blah from the same data as @dave30th is looking at currently? Dates match? Adolescents and parents interviewed. Haven't had time to read the full paper yet.
     
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  14. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    It's St Esther - she can do what she wants. :mad: But I haven't read the whole thing yet - maybe there's some sort of excuse? Guessing it might be something along the lines of "this data used for other papers so we can do what the hell we like with it now as we got permission before already." :ill:

    (edited for punctuation)
     
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  15. Cheshire

    Cheshire Senior Member (Voting Rights)

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    Or service evaluation?:whistle:
     
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  16. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    I'm wrong about the dates etc. Here's what it says about Ethics Approval:

     
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  17. Andy

    Andy Committee Member

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  18. Sean

    Sean Senior Member (Voting Rights)

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    Stopped there.

    Enough with the career-enhancing qualitative spinfest. Use objective measures (and report them honestly), or GTFO of the game. :grumpy:
     
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  19. rvallee

    rvallee Senior Member (Voting Rights)

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    But, that would be devastating to their case. Every objective study they tried failed miserably.

    I think a much bigger deal should be made of that fact. They have been allowed to cheat for so long it's tradition at this point but the fact that they very deliberately and knowingly stay far away from objective research, to the point of stopping planned objective outcomes in their flagship study, really ought to be stated much more often. Like, every single time.

    In the very best case this kind of subjective research can be useful as indicative that objective, more expensive, studies be made. But after 3 WHOLE DECADES of this nonsense the game is up. They have over a decade of NICE guidelines in place by now. This should have lead to large, objective measured outcomes to make sure the guidelines are actually working as intended. They were continued in 2017 on the basis that they worked, yet no data was brought forward. The subjective tiny trials are irrelevant after a whole decade in practice.

    Objective research or GTFO indeed. This is a point of basic scientific integrity that can be made in general, not just about ME research. It is not controversial in itself.
     
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