1. Guest, 'News In Brief' from w/c 3rd Dec can be read here.
    Dismiss Notice

Pediatric chronic fatigue syndrome: current perspectives (Crawley)

Discussion in 'PsychoSocial ME/CFS Research' started by Webdog, Mar 29, 2018.

  1. Webdog

    Webdog Senior Member (Voting Rights)

    Messages:
    1,317
    Likes Received:
    8,731
    Location:
    California
    New Crawley publication in the journal Pediatric Health, Medicine and Therapeutics.

    https://www.dovepress.com/pediatric...rrent-perspectives-peer-reviewed-article-PHMT
    Edit: Fixed a mistyped date.
     
    Last edited: Mar 29, 2018
    Woolie, Hutan, Indigophoton and 7 others like this.
  2. sea

    sea Senior Member (Voting Rights)

    Messages:
    365
    Likes Received:
    2,610
    Location:
    NSW, Australia
    Will I or won’t I? :facepalm::nailbiting:

    Ugh! I did :wtf::yuck::banghead:

    Thanks for bringing to our attention Webdog
     
    Hutan, ladycatlover, mango and 3 others like this.
  3. chicaguapa

    chicaguapa Established Member (Voting Rights)

    Messages:
    70
    Likes Received:
    679
    Haha! That's exactly what went through my mind!

    (I haven't yet!)
     
    Hutan, ladycatlover, Jan and 4 others like this.
  4. Sean

    Sean Senior Member (Voting Rights)

    Messages:
    1,147
    Likes Received:
    9,485
    So what ranking is this journal? ;)
     
    Webdog, ladycatlover, Jan and 3 others like this.
  5. Trish

    Trish Moderator Staff Member

    Messages:
    8,645
    Likes Received:
    47,873
    Location:
    UK
    I've just waded through it.
    Some good stuff, some dreadful, as expected.
    A few things that stood out to me:

    She says PEM is a requirement for diagnosis, but doesn't explain what she thinks it is.

    She says the best treatment is CBT/GET and claims it has good evidence of effectiveness in adults.

    She describes the treatment as finding a base level of activity, then gradually increasing it on good days to avoid PEM. She implies that this is possible!

    She says sleep should be regulated to regular night and no day sleeps. No recognition of sick children's need to sleep more.

    Treatment for orthostatic intolerance - water, salt and increased activity.

    She says there is no evidence of useful treatment for the severely affected.

    She claims very high recovery rates in children based on this:
    She talks a lot about comorbid anxiety and depression, says they may be a result of the CFS rather than the cause.

    She claims childhood adversity and maternal mood are contributing factors.

    She says large omics studies are needed to help understand the different subgroups.
     
    Last edited: Mar 29, 2018
  6. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    580
    Likes Received:
    3,752
    Thanks @Webdog, just what I needed to get me going on advocacy again this morning.
    Several emails drafted and groups contacted.
     
    Sleepyblondie, TiredSam, sea and 8 others like this.
  7. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    1,176
    Likes Received:
    7,033
    I have not had the heart today to look at this, but will work up to it
    From Trish's comments,
    Re largest trial
    • how were children diagnosed and referred?
    • do we have a definition of what "recovery" is?
    • do we know that we are actually studying ME ?
    • were outcomes subjective/ objective?
    From other parental experience , being " in school" does not equate to being capable of learning- this is the most important aspect, children do not necessarily reach their full potential by being at school- it does however tick a key outcomes box for school performance; for most school attendance can cause deterioration and attendance fluctuates accordingly.

    It would be good to have this assessed and a response from the MEA, @Russell Fleming and perhaps some other figure of medical authority? perhaps @dave30th may have an idea of how this could be done-otherwise the sausage machine will chunter on and more children will be fodder
     
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    2,134
    Likes Received:
    17,673
    "the majority of children get better with specialist treatment"

    I haven't read it all but this claim is so vague. By 'get better' does she mean improve or recover?
    As with most of her 'research' she rarely says how long it took them to 'get better'; I remember listening to the Radio4 (?) program where the reporter went with her to visit one of her patients who I think she had been 'treating' for four years(?) And there have been people saying that she doesn't do any follow ups for a lot of her patients. So does she just assume that if they stop going back for treatment they have 'got better'?
     
  9. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

    Messages:
    1,201
    Likes Received:
    8,731
    We know she conflates fatigue with ME, those who have recovered will be the teenagers who were fatigued due to poor sleep hygiene or those who would have recovered anyway.
     
  10. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    1,176
    Likes Received:
    7,033
    Note also the " omics" reference - this is a means of keeping MEGA to the fore.
     
  11. Jan

    Jan Senior Member (Voting Rights)

    Messages:
    401
    Likes Received:
    2,939
    I don't understand the whole research world, so could someone who knows more than me tell me how they justify doing virtually the same study over and over (and over) again? How do they justify the research funds, how do they get given the funding?

    There must be literally 100's or thousands of studies claiming CBt/GET leads to recovery in ME, why keep doing the same studies again and again? I really don't understand this.
     
  12. Jan

    Jan Senior Member (Voting Rights)

    Messages:
    401
    Likes Received:
    2,939
    I'm not necessarily talking about this study, I really can't bring myself to read it and I've nothing to hand to use as a sick bowl.
     
    ladycatlover, MEMarge, Joh and 2 others like this.
  13. Trish

    Trish Moderator Staff Member

    Messages:
    8,645
    Likes Received:
    47,873
    Location:
    UK
    This one's not a study, it's an article explaining to the world of paediatricians the gospel according to St. Esther Crawley, patron saint of the biopsychyosocial cult.
     
    Sleepyblondie, Woolie, sea and 9 others like this.
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    2,134
    Likes Received:
    17,673
    Maybe this is why she's done this
    "
    This may explain the relatively low response rate to current
    treatments. To develop better treatments, we need larger trials
    with carefully characterized participants to understand more
    about treatment response. We need to develop treatments in
    the areas identified previously where there is no evidence for
    effective treatment. This includes the treatment of CFS and
    comorbid mood disorders, CFS in primary school children,
    those who are severely affected, and those with refractory
    fatigue. We also need to start to develop an understanding
    of the biology of CFS/ME and whether different biological
    pathways are associated with different disease phenotypes.
    Some early studies with small sample studies suggest that an
    omic approach to dissecting out the different subtypes may
    help to clarify different biological pathways.73 This approach
    will require a large bioresource of well-characterized patients."

    the biobank (MEGA)?

    although isn't
    "relatively low response rate to current treatments" a contradiction of
    "the majority of children get better with specialist treatment"??

    "refractory fatigue".............what's this(?) another proxy(?)

    :asleep:
     
  15. large donner

    large donner Senior Member (Voting Rights)

    Messages:
    699
    Likes Received:
    6,087
    They love to cover every base, this almost sounds like pacing and it doesn't actually define recovery as back to full function. It could easily be used to claim it is managing the illness and staying within ones limits if they get asked tricky questions about true definitions.

    She has claimed numerous times that her treatment reduces activity to almost zero at first then builds up gradually, seems like one could just do that and go back up to their natural pacing limit and it could then be claimed by the therapist that this is GET working. Its not its pacing.


    Presumably if one refers to being frustrated or fed up with the condition at any time they get stamped with a depression and anxiety label.
     
    Woolie, Solstice, Sean and 5 others like this.
  16. Jan

    Jan Senior Member (Voting Rights)

    Messages:
    401
    Likes Received:
    2,939
    Yes, Fester doesn't define depression in kids with ME any better than she defines ME itself.
     
  17. Karen Kirke

    Karen Kirke Established Member

    Messages:
    14
    Likes Received:
    214
    In the section on treatment of “Dizziness and Orthostatic Symptoms”, Crawley states: “Treatment should start with behavioral methods, including increasing activity and movement, increasing fluid intake to 2–3 L a day, and increasing salt intake.57 Occasionally, medication can be used depending on the response to behavioral approaches and the symptoms described.57

    Reference 57 is the Rowe et al 2017 primer. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5474682/

    I don't think Rowe et al agree with Crawley on her advice to "increas[e] activity and movement". It could look to readers as if this is their recommendation. Here’s what Rowe et al 2017 say about treatment:

    On p.15 Rowe et al clarify their nuanced take on activity and exercise as follows:


    Rowe et al give more detail on treatment of orthostatic intolerance in particular on p.20:
    They go into detail on all of these, but here are the only bits that involve movement of any kind:


    After discussing (a) to (d) above in detail, Rowe et al continue:

    and go on to describe pharmacological management in detail.
     
    Sleepyblondie, Woolie, sea and 14 others like this.
  18. Andy

    Andy Committee Member

    Messages:
    4,323
    Likes Received:
    31,712
    Location:
    Hampshire, UK
    For those noting items that might link in to MEGA, this publication was originally submitted Aug 2017 and a lot has happened between then and now in regard to MEGA, the CMRC and Crawley's ability to influence both. Obviously only time will tell for certain but as best we know MEGA, at the very least in it's Crawley incarnation, is dead in the water.
     
  19. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    1,176
    Likes Received:
    7,033
    As posted by others- the international paediatric primer has " treatment" options for many symptoms - I printed off a copy for both GP and paediatrician. Far more comprehensive and empathetic. perhaps MEA could reference to it if they comment on this paper?
     
  20. Trish

    Trish Moderator Staff Member

    Messages:
    8,645
    Likes Received:
    47,873
    Location:
    UK
    Good point about MEGA, @Andy. If the CMRC decided to revive it, it will presumably be under the guidance of @Chris Ponting, which would be a completely different proposition, and hopefully done through expanding the existing UK ME biobank.

    Though I can imagine Crawley might have ideas of setting up her own paediatric biobank.

    I think the part about more studies being needed into treatments is her angling for more funding for yet more CBT/GET trials. I fear for kids with severe ME if she tries to set up a treatment trial for them.
     
    ladycatlover, Woolie, Jan and 4 others like this.

Share This Page