Pediatric chronic fatigue syndrome: current perspectives (Crawley)

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.

 

Will I or won’t I?

Ugh! I did

Thanks for bringing to our attention Webdog

 

Haha! That's exactly what went through my mind!

(I haven't yet!)

 

Thanks @Webdog, just what I needed to get me going on advocacy again this morning.
Several emails drafted and groups contacted.

 

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

 

"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'?

 

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.

 

Note also the " omics" reference - this is a means of keeping MEGA to the fore.

 

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.

 

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.

 

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(?)

 

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.

 

Yes, Fester doesn't define depression in kids with ME any better than she defines ME itself.

 

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.

 

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.

 

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?