How is paediatric CFS/ME diagnosed and managed by paediatricians? An Australian Paediatric Research Network, 2014, Knight et al

Hutan

Hutan

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2014 paper

Sarah Knight, Adrienne Harvey, Susan Towns, Donald Payne, Lionel Lubitz, Kathy Rowe, Colette Reveley, Sabine Hennel, Harriet Hiscock, Adam Scheinberg

Abstract
Aim
The diagnosis and management of paediatric chronic fatigue syndrome/myalgic encepnalomyelitis (CFS/ME) represent ongoing challenges for paediatricians. A better understanding of current approaches at a national level is important in informing where research and education could improve treatment outcomes. We aimed to examine current diagnosis and management practices for CFS/ME by Australian paediatricians.

Method
An online survey was sent to members of the Australian Paediatric Research Network. The primary outcomes of interest included diagnostic criteria used, medical investigations and management practices in paediatric CFS/ME.

Results
One hundred seventy-eight (41%) of 430 eligible paediatricians responded, with 70 of the 178 (39%) reporting that they diagnose and manage CFS/ME as part of their practice. Medical investigations used for diagnosis were variable. Conditions that more than half of the paediatricians reported as commonly co-occurring (i.e. present in >50% of cases) included somatisation disorders, anxiety, depression and fibromyalgia. There was wide variation in behavioural and pharmacological management strategies but most paediatricians commonly engaged a school teacher, physiotherapist and/or psychologist as part of their management.

Conclusion
The diagnostic and management practices of paediatricians for CFS/ME within Australia vary widely. This likely reflects a paucity of paediatric-specific guidelines, together with limited evidence to guide best practice and limited training in this area. There is a need for guidance and education for the diagnosis and management of paediatric CFS/ME in Australia.

https://onlinelibrary.wiley.com/doi/10.1111/jpc.12677
 
"What this paper adds
  • While Australian paediatricians do diagnose and manage CFS/ME, there is wide variation in their approaches
  • Somatisation, anxiety and depression are reported by the majority of paediatricians to be the most common comorbidities of CFS/ME.
  • In keeping with best practice guidelines, most Australian paediatricians use a multidisciplinary approach to management; however, few conducted recommended first-line investigations."
 
Various terms, including CFS/ME, ME, CFS and chronic fatigue, are often used interchangeably to refer to the same condition.8
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There was variability in the medical investigations conducted with only 12 paediatricians (17%) reporting that they routinely conduct investigations that are included in the recommended first-line investigations of the guidelines for the diagnosis of CFS/ME.
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Investigation......... percentage of paediatricians reporting that the routinely did this to diagnose CFS/ME
Full blood count ........86%
Blood biochemistry: urea, electrolytes and creatininea .......79%
Ferritin............71%

Conditions that more than half of the paediatricians reported as common to extremely common comorbidities included somatisation disorders, anxiety, depression and fibromyalgia
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35% of paediatricians said that 75-100% of young people with ME/CFS they see have a somatisation disorder
26% of paediatricians said that 50-75% of young people with ME/CFS they see have a somatisation disorder
22% of paediatricians said that 25-50% of young people with ME/CFS they see have a somatisation disorder
9% of paediatricians said that 1-25% of young people with ME/CFS they see have a somatisation disorder
8% of paediatricians said that 0% of young people with ME/CFS they see have a somatisation disorder

8% is 5 paediatricians
 
Paediatricians reported using a range of strategies/treatments in their management of CFS/ME with sleep hygiene advice, graded exercise therapy (GET), modified school programme and pacing among the most common (
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High rates of comorbid mental health conditions, particularly anxiety, depression and somatisation, were reported by the majority of paediatricians, consistent with studies identifying the elevated co-occurrence of these conditions in CFS/ME.
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Ha, that sentence is ambiguous, it could be the paediatricians with high rates of comorbid mental health conditions. I cannot work out how you would differentiate CFS/ME and CFS/ME +somatisation. I actually think that what many of the paediatricians are suggesting with their reference to somatisation is that CFS/ME=somatisation.

Management and treatment
The recommended management of CFS/ME involves a multidisciplinary approach.21 In line with this, the paediatricians in the current study commonly reported the engagement of other disciplines, particularly psychologists and physiotherapists, as part of their management approach. Liaison with schools (also described as a critical component of management in guidelines) was reported to be common practice among the majority of paediatricians.
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Interestingly, most paediatricians reported recommending GET as a common part of their practice. Despite the demonstrated efficacy of GET in adults with CFS/ME,48there is insufficient evidence for its efficacy in children and adolescents.19 Future studies aimed at providing evidence for the efficacy of GET in children and adolescents with CFS/ME are therefore crucial.
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There is emerging evidence that a CBT-based approach is effective in children and adolescents with CFS/ME,19 and it was encouraging to see that CBT formed a common part of management for the majority of paediatricians in the current study. A range of other recommendations incorporated in the guidelines (e.g. sleep hygiene advice and symptom management with medication) formed part of the management of CFS/ME by most paediatricians in the current sample.
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Actually sleep hygiene and GET were the two most used treatments, with the majority of paediatricians applying them to nearly all of their patients.

In my view, sleep hygiene can be particularly problematic in this age group with growth spurts placing a heavy demand on the body. The fact that there are parents to police the recommended intervention is another reason why sleep hygiene can be such a problem in this age group.

For management of CFS/ME in children and adolescents, current guidelines suggest using a combination of symptom management with medication, addressing sleep disturbances and comorbid psychopathology, school liaison, encouraging maintenance of social contact and achieving an appropriate balance between rest and activity (sometimes referred to as ‘pacing’)
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Pacing is vaguely described as an appropriate balance between rest and activity.
Clearly, somatisation is seen as a common comorbid psychopathology, and the guidelines recommend clinicians address it.

Third, the aim of the current study was to understand the diagnosis and management practices pertaining to paediatric CFS/ME. Accordingly, this survey did not provide information about responders who did not make a diagnosis of CFS/ME and who may instead have made a primary diagnosis of somatisation, anxiety or depression, or may have lacked confidence in making the diagnosis, or may disagree with current criteria for the diagnosis. While beyond the scope of the current study, this information may have been useful given that controversy continues to surround the diagnosis of CFS/ME.
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It is noted that this survey doesn't reflect the clinicians who don't diagnose CFS/ME at all, and who may be instead diagnosing somatisation , anxiety or depression at the primary illness.
 
Hutan said:
I actually think that what many of the paediatricians are suggesting with their reference to somatisation is that CFS/ME=somatisation.
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That is my reading of it.

the paediatricians in the current study commonly reported the engagement of other disciplines, particularly psychologists and physiotherapists,

Interestingly, most paediatricians reported recommending GET as a common part of their practice. Despite the demonstrated efficacy of GET in adults with CFS/ME,48there is insufficient evidence for its efficacy in children and adolescents.19 Future studies aimed at providing evidence for the efficacy of GET in children and adolescents with CFS/ME are therefore crucial.

There is emerging evidence that a CBT-based approach is effective in children and adolescents with CFS/ME,19 and it was encouraging to see that CBT formed a common part of management for the majority of paediatricians in the current study.​

Be interesting to see if their views have changed in the last decade. Though no doubt their marketing language has.
 
Trish said:
If they are using completely inappropriate questionnaires or the equivalent approach to interviewing the parents, it's no wonder they diagnose such a high rate of somatisation.
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I doubt that the paediatricians even bother with a survey for clinical care, in much the same way as many of them don't seem to do much in the way of lab tests. I expect that their special experience and skills allow them to just divine that the young person in front of them has somatisation.
 
Hutan said:
I doubt that the paediatricians even bother with a survey for clinical care, in much the same way as many of them don't seem to do much in the way of lab tests. I expect that their special experience and skills allow them to just divine that the young person in front of them has somatisation.
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Yes.

An ill child may present in a state of distress from their horrible illness experience or encounter with one of these paediatricians. Or else be too exhausted to perform engagement and energy at consultation.

Seems most of these paediatricians don’t think; ahh yes poorly child quite usual presentation. Hopefully they’ll bounce back in a time. Or poor thing I should investigate. Instead set about recommending a program designed to discipline the child back to health.

It’s not pathological to worry about one’s health if one is unwell. Especially if untreated or mistreated. Child or adult.
 
Hutan said:
Ha, that sentence is ambiguous, it could be the paediatricians with high rates of comorbid mental health conditions. I cannot work out how you would differentiate CFS/ME and CFS/ME +somatisation. I actually think that what many of the paediatricians are suggesting with their reference to somatisation is that CFS/ME=somatisation.

Management and treatment



Actually sleep hygiene and GET were the two most used treatments, with the majority of paediatricians applying them to nearly all of their patients.

In my view, sleep hygiene can be particularly problematic in this age group with growth spurts placing a heavy demand on the body. The fact that there are parents to police the recommended intervention is another reason why sleep hygiene can be such a problem in this age group.


Pacing is vaguely described as an appropriate balance between rest and activity.
Clearly, somatisation is seen as a common comorbid psychopathology, and the guidelines recommend clinicians address it.


It is noted that this survey doesn't reflect the clinicians who don't diagnose CFS/ME at all, and who may be instead diagnosing somatisation , anxiety or depression at the primary illness.
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Scary

sleep hygiene is incredibly quick way to destroy health , I think even more fast than get - and as far as ‘mental health’ callousness felt and ostracisation /brutality of it and the impact of that it’s something that leaves a scar that would be difficult to repair

the idea that it would be combined with anything where the activity isn’t then entirely led by ‘listening to the body’ nevermind GET alongside is deadly. The disability it can induce within just six weeks and the utter hell someone would be in from that first week on are immoral because it would unmissable

I find it hard to even think that in the recent past some did this given what it would look like as far as obvious coercion not doing good nevermind still somehow not wanting to see it

I would almost say that along with lie flat the impact of behavioural training particularly on sleep making it ten times c more ingrained and permanent as well as increasing disability is almost one of the biggest clues of what the underlying condition (that they don’t want to acknowledge exists often is the real issue) actually is.

And would be a tell take diagnostic criteria it’s definitely textbook ME - certainly if it gets more out of hand when people are held above their energy threshold every day. Except apparently not everyone has this symptom, or do they? And they just luck out on their PEM timing (not being 36hrs later but hitting in the day) or have threshold more under control vs life or what is it?

I’m asking adults but as you say with children they are given less wiggle room by the sounds when they first get ill. I wonder whether on this question even most adults would find that a hallmark of the condition is that even for a short term and ignoring the swift deterioration it would cause it simply isn’t possible to both even do sleep hygiene AND be cumulatively ‘above threshold’ is a hallmark? Because going over in itself will produce different to normal NEEDS with regards sleep (and when you body is able to thanks to being put into overdrive)

I really cannot believe they are getting away with doing it to teenagers without the very few proper top level experts (ie not just sleep hygiene) in disorders of the body that affect sleep being involved because at least now it is known how important those shifted sleep cycles in teenage years are ie they have a purpose
 
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Hutan said:
I doubt that the paediatricians even bother with a survey for clinical care, in much the same way as many of them don't seem to do much in the way of lab tests. I expect that their special experience and skills allow them to just divine that the young person in front of them has somatisation.
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How do so many of them end up with this hard headed mindset?
 
bobbler said:
How do so many of them end up with this hard headed mindset?
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  • the natural inclination of the doctors - 'I have pushed through adversity to be a high achiever, other people should too'
  • reliance on tests: 'if none of my tests show that you have a physical problem, the problem must lie with your thoughts and behaviours'
  • training in med school promoting the BPS paradigm;
  • ongoing reinforcement of views by continuing professional development materials and conference presentations and papers like this one;
  • official guidelines promoting the BPS paradigm;
  • courses like the one we have seen written about recently where doctors are encouraged to slap BPS labels on people
  • government/insurance encouragement to not do unnecessary investigations
  • incentives to keep consultations short, favouring quick diagnosis and lack of curiosity
  • lack of systems to inform doctors of the consequences of their treatments - patients who don't agree with the treatment proposed or who get worse just don't go back to the doctor
  • private companies profiting off the BPS paradigm - e.g. rehabilitation clinics
  • the hope of patients, leading them to report that they are better when they just hope that they will be better
  • the politeness of patients, leading them to not say that the treatments were a waste of time
Issues particularly relevant to paediatricians:
  • natural recovery - possibly children are more likely to recover
  • parents, not understanding the illness well, and the child either not being able to explain or not being listened to
  • parents wanting there to be an easy solution, and so seeing improvements when there are none
I'm sure you can add more.
 
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Hutan said:
  • the natural inclination of the doctors - 'I have pushed through adversity to be a high achiever, other people should too'
  • reliance on tests: 'if none of my tests show that you have a physical problem, the problem must lie with your thoughts and behaviours'
  • training in med school promoting the BPS paradigm;
  • ongoing reinforcement of views by continuing professional development materials and conference presentations and papers like this one;
  • official guidelines promoting the BPS paradigm;
  • courses like the one we have seen written about recently where doctors are encouraged to slap BPS labels on people
  • government/insurance encouragement to not do unnecessary investigations
  • incentives to keep consultations short, favouring quick diagnosis and lack of curiosity
  • lack of systems to inform doctors of the consequences of their treatments - patients who don't agree with the treatment proposed or who get worse just don't go back to the doctor
  • private companies profiting off the BPS paradigm - e.g. rehabilitation clinics
  • the hope of patients, leading them to report that they are better when they just hope that they will be better
  • the politeness of patients, leading them to not say that the treatments were a waste of time
Issues particularly relevant to paediatricians:
  • natural recovery - possibly children are more likely to recover
  • parents, not understanding the illness well, and the child either not being able to explain or not being listened to
  • parents wanting there to be an easy solution, and so seeing improvements when there are none
I'm sure you can add more.
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Yep, they keep the delusion stoked continually don't they. Even via against informed-consent embedding of brainwashing and gaslighting onto patients (CBT telling someone black is white certain should not be embedded and those professions who aren't actually registered to be doing it anyway should be touching it, but worse are being used to slide it in using anti-mental health content and in an unethical way), along with coercion (a biggie in this area by the sounds). No patient here would be safe being honest, they must admit that it is 'say the right answer or ... big risks of all sorts'?

yes OK this is one from social media (a medic) but it is a valid point, which is the hit-and-run nature of their interactions and observations with patients these days. My patient no longer means the same thing as my patient would have, and certainly with anything that is a complex illness and has been designed not to have an appropriate home then noone is bothered to use their eyes and do the observations, and they don't have a same sense or duty or even attitude of responsibility or accountability for outcome just 'tick the box on that little bit in the sausage machine task' ie not whether said task did any good just 'making it be done'.

If they are promised something will work like x, they aren't interested in anything else and children are even more vulnerable than adults even are so ...

But as it seems a callous indifference in adults, there must be a level of callousness to children - and someone has to say the obvious - to be this way and close your eyes to what is there to be seen but choose to see something not there and that a child is to blame instead. Which I just find plain weird when it goes with people who chose a profession that is basically all about children. And it's a whole new level of cognitive dissonance they are bridging when it's kids .

But there must underneath it all be some grim attitude to be discussed of a tendency to think some pretty unkind and inappropriate things about children and their behaviour when sleep hygiene doesn't work. Sleep isn't a naughtiness thing, so I have never got why people want to associated it with that because that is just a parental attribution onto it due to the inconvenience.

It just reminds me of the old days crappy attitude where kids who had dyslexia ended up in 'schools for naughty children' (and yes they actually used that term in the UK) having been bullied by their teachers - because the teachers didn't understand so assumed the kids were stupid and/or 'bad' level of stuff.

That these professionals are unable to learn from the lessons put in front of them like this is shocking. And says a lot about medicine and other systems.


I've people I know who have ASD spectrum children at young ages and the not sleeping seems to be a common theme I didn't know until people close enough to me to divulge this were mothers of children having such. I'm not saying that is the same cause or thing but it seems to me very dead-headed that we have such believers who think there is no sleep that is made worse rather than fixed by unkind sleep hygiene.

Fair enough try making the bed comfy and don't have exciting things going on in the run up to bed etc but given most kids can have both and no issues I don't understand - other than the distraction that's nothing to do with the price of eggs of they haven't bothered to look into finding something else (and never will as long as they continue the attitude wholesale across all front line) that 'we've nothing else' which I was shocked at that they should've been ashamed 20yrs ago - why they've now rewritten the narrative to 'it can only be sleep hygiene'.

To me it seems barn door obvious that there is such a thing as too tired to get good sleep and allowing naps therefore can be helpful to a night's sleep. it is just a pseudo-religion myth belief that there aren't illnesses like that because it isn't like when these doctors get flu and glandular fever they think the most important thing they should do is to not sleep as the body demands. which is hypocrisy.
 
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10 years on it can self-perpetuate in prep for new Guidelines, BUT

I suspect the paediatricians in question are allowed to call it somatisation, whenever they cannot find, or cannot correlate, the tangible evidences

I don't know if it gave them the handle they need and do seek

I don't know if they found any characteristic to say: that makes it somatisation

Maybe to them it is still a diagnosis of .... exclusion

- now allowed to be co-morbid as well

- if only to keep the team onside, in the loop

They cannot know that somatisation is co-morbid

To me, this is the same as saying FND must be co-morbid, and an eating disorder must be co-morbid, and Factitious or else Induced Illness must be co-morbid, and all psycho-pathology, as described, must be co-morbid. If the tag fits. Refer. Case closed. Next

what they need is a biomedical questionnaire to replace competitve psycho-pathological questionnaires

A psycho-pathological questionnaire, like any other subsidised provision, is not necessarily more cost-effective, than a 1st-line investigation. Even if asked for and wanted and needed. More a cuckoo in the paediatric nest. But it may find a subsidised place for the backlog of mentally distressed minors in the national well-being framework
Hutan said:
"What this paper adds

is wide variation in their approaches
  • Somatisation, anxiety and depression are reported by the majority of paediatricians to be the most common comorbidities of CFS/ME.
  • In keeping with best practice guidelines, most Australian paediatricians use a multidisciplinary approach to management; however, few conducted recommended first-line investigations."
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The "best" practice of this world-class multi-disciplined approach was found to be most remarkably remiss (10yrs ago). It replaced 1st line investigations.

So it becames dangerous. But it did avoid the disciplinary investigations, along with the the disciplined investigations

Trish said:
If they are using completely inappropriate questionnaires or the equivalent approach to interviewing the parents, it's no wonder they diagnose such a high rate of somatisation.
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They surely are using the psycho-pathological questionnaires, it not being their field. They'd be lost without this <<< medical device >>> yes it is yes it is yes it is a medical device. A piece of software, a diagnostic aid tool, a measuring tool, and a monitoring tool. Ticks all the boxes

In the UK
medical devices
get yellow-carded

The European Regs
still hold in the UK
for all such medical devices

it is also a matter of Taxonomy (information Science)

The Australian Regs
on software devices

- on reporting a breach

- or a risk, problem or adverse event

or I mistook and I am mistaken
 
Hutan said:
  • the natural inclination of the doctors - 'I have pushed through adversity to be a high achiever, other people should too'
  • reliance on tests: 'if none of my tests show that you have a physical problem, the problem must lie with your thoughts and behaviours'
  • training in med school promoting the BPS paradigm;
  • ongoing reinforcement of views by continuing professional development materials and conference presentations and papers like this one;
  • official guidelines promoting the BPS paradigm;
  • courses like the one we have seen written about recently where doctors are encouraged to slap BPS labels on people
  • government/insurance encouragement to not do unnecessary investigations
  • incentives to keep consultations short, favouring quick diagnosis and lack of curiosity
  • lack of systems to inform doctors of the consequences of their treatments - patients who don't agree with the treatment proposed or who get worse just don't go back to the doctor
  • private companies profiting off the BPS paradigm - e.g. rehabilitation clinics
  • the hope of patients, leading them to report that they are better when they just hope that they will be better
  • the politeness of patients, leading them to not say that the treatments were a waste of time
Issues particularly relevant to paediatricians:
  • natural recovery - possibly children are more likely to recover
  • parents, not understanding the illness well, and the child either not being able to explain or not being listened to
  • parents wanting there to be an easy solution, and so seeing improvements when there are none
I'm sure you can add more.
Click to expand...

I love this bullet point run down @Hutan

You’re writer in chief for our information sheet;

Doctors Why Are They Like This?
 
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