Pediatric chronic fatigue syndrome: current perspectives (Crawley)

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New Crawley publication in the journal Pediatric Health, Medicine and Therapeutics.

https://www.dovepress.com/pediatric...rrent-perspectives-peer-reviewed-article-PHMT
Pediatric chronic fatigue syndrome: current perspectives

Authors Crawley E

Received 16 August 2017
Accepted for publication 24 January 2018
Published 29 March 2018 Volume 2018:9 Pages 27—33
DOI https://doi.org/10.2147/PHMT.S126253
Checked for plagiarism Yes
Review by Single-blind
Peer reviewers approved by Dr Colin Mak
Peer reviewer comments 3
Editor who approved publication: Dr Roosy Aulakh

Esther Crawley
Centre for Child and Adolescent Health, Bristol Medical School, University of Bristol, Bristol, UK

Abstract: Pediatric chronic fatigue syndrome is an important illness as it is relatively common and also very disabling with a wide range of impacts on the child, the family, and health care systems. It is a complicated illness but the majority of children get better with specialist treatment. This literature review provides an update on the epidemiology of chronic fatigue syndrome /myalgic encephalomyelitis, including factors associated with it, and discusses the current evidence for treatment.
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Edit: Fixed a mistyped date.
 
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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:
In the largest pediatric trial to date, 75% of children were attending full-time school at 6 months and 63% were considered recovered on both primary and secondary outcomes,
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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.
 
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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'?
 
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.
 
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:
 
Trish said:
She describes the treatment as finding a base level of activity, then gradually increasing it on good days to avoid PEM.
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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.


She talks a lot about co morbid anxiety and depression, says they may be a result of the CFS rather than the cause.
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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.
 
large donner said:
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.





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.
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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:

Management differs between individuals. Determining the optimum balance of rest and activity (pacing of activities) can help prevent post-exertional worsening of symptoms. Medications are helpful to treat pain, insomnia, and orthostatic intolerance. Young patients with ME/CFS commonly respond to lower dosages of many medications. Advice on nutrition can be helpful. Supportive psychotherapy can sometimes benefit mildly affected young patients, but inflexible, graded exercise (GET) is harmful and can lead to worsening of symptoms.
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On p.15 Rowe et al clarify their nuanced take on activity and exercise as follows:

Adding an exercise program to the schedule of a young person who can barely manage to cope with limited educational activities can be counterproductive. Exercise has been promoted as therapeutic in patients with ME/CFS, but many patients drop out of exercise studies because exercise clearly made them worse (101). Some individuals with ME/CFS mistakenly over-exercise in an attempt to reduce fatigue and then incur post-exertional relapse. No studies have shown that exercise can produce a cure for ME/CFS.
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Occasionally an excess of caution in young patients and/or their care givers can result in too much rest. Prolonged periods of complete bed rest should be avoided except in the most severely affected patients….
Striking the right balance between rest and activity while avoiding post-exertional symptoms requires trial and error.
However, for some patients with less severe ME/CFS, or during a remission, a suitable exercise program can improve function and provide some enjoyment. Any exercise program should not take priority over activities of daily living, education and socialization. Special care also needs to be taken to ensure that exercise is not advanced too rapidly or too soon, as by definition, excessive exercise can exacerbate ME/CFS symptoms.
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Rowe et al give more detail on treatment of orthostatic intolerance in particular on p.20:
The first step in management is non-pharmacological and emphasizes four main points: (a) avoid conditions that increase pooling of blood, (b) improve venous return to the heart, (c) avoid depletion of salt and water and other causes of low blood volume, and (d) avoid increasing catecholamines beyond their baseline levels (which can be elevated).
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They go into detail on all of these, but here are the only bits that involve movement of any kind:

Avoid Pooling of Blood
This involves avoiding prolonged standing or sitting, such as by moving around during longer classroom lectures, standing and stretching periodically to break up study sessions, and shopping at off hours…
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Improve Venous Return to the Heart
Adolescents can utilize the muscle pump of the lower limbs by e.g., crossing their legs and shifting from one leg to the other while standing, sitting with their knees higher than their hips, or with their knees to their chests, or by performing leg muscle contraction exercises before standing. Sitting on a high stool with the legs dangling freely should be avoided, as there is no resistance to blood pooling in the legs. Some adolescents find they can sit longer without symptoms if they put their feet on a low foot rest, or sit with one leg folded under the buttocks…
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After discussing (a) to (d) above in detail, Rowe et al continue:

The second step in management is to treat other ME/CFS symptoms and co-morbid conditions. Treating symptoms, especially pain and sleep problems, can improve OI symptoms.

The third step in management is pharmacological intervention, aiming for monotherapy, but often rational poly-therapy produces better symptom control.
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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.
 
Sly Saint said:
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:
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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?
 
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.
 
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