Chronic fatigue syndrome/myalgic encephalomyelitis in children aged 5 to 11 years: A qualitative study, 2020, Bridgen, Crawley et al

Andy

Andy

Retired committee member
Treatments for paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) have not been designed or evaluated for younger children (5–11-years). The development of a complex intervention for this population requires an in-depth understanding of the perspectives and psychosocial context of children and families.

Children with CFS/ME (5–11-years) and their families were recruited from a specialist CFS/ME service, and interviewed using semi-structured topic guides. Data were analysed thematically. Twenty-two participants were interviewed; eight parents, two children (aged nine and ten) and six parent-child dyads (aged 5–11-years). Theme 1: CFS/ME in younger children is complex and disabling. Theme 2: Children aged eight and over (in comparison to those under eight) were more able to describe their illness, engage in clinical consultation, understand diagnosis and self-manage. Theme 3: Parents of children under eight took full responsibility for their child’s treatment. As children got older, this increasingly became a joint effort between the parent and child. Parents felt unsupported in their caring role.

Clinicians should consider different treatment approaches for children under eight, focusing on: parent-only clinical sessions, training parents to deliver treatment, and increasing support for parents. Children over eight may benefit from tools to help them understand diagnosis, treatment and aids for self-management.
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Open access, https://journals.sagepub.com/doi/10.1177/1359104520964528
 
Clinicians should consider different treatment approaches for children under eight, focusing on: parent-only clinical sessions, training parents to deliver treatment, and increasing support for parents. Children over eight may benefit from tools to help them understand diagnosis, treatment and aids for self-management.
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Treatment? What treatment?

Treatments recommended by National Institute for Health Care Excellence (NICE 2007) include Cognitive Behavioural Therapy (CBT) and behavioural approaches (Graded Exercise Therapy, GET, and activity management) (Brigden et al., 2017). All treatments offer advice on sleep, symptom management and co-morbidities such as mood disorders and pain. CBT, which has the strongest evidence base (Al-Haggar et al., 2006; Chalder et al., 2010; Lloyd et al., 2012; Nijhof et al., 2012; Stulemeijer et al., 2005), supports the young person to identify and change fatigue-related cognitions and gradually resume activities (Brigden et al., 2017). GET aims to stabilise physical activity levels, before gradually increasing activity at a manageable rate (White et al., 2007). Activity Management is a goal-oriented and person-centred approach which establishes a baseline for all activity (physical, cognitive and emotional), which is then increased (White et al., 2007).
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This is a 2020 paper. It might be useful when commenting on the NICE Guideline draft if the draft says that CBT is useful in helping patients adapt to their illness. Clearly, the idea of CBT for ME/CFS as understood by at least some clinicians has nothing to do with support for adaptation.
 
it was like how tiredness works and how your energy works. . . And I don’t produce as much like melatonin what gets you to sleep . . . there were weird names for each thing. (Willow, KS2)
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What evidence is there for children with ME/CFS producing less melatonin? There are questions about the safety of melatonin supplementation in children.

CFS/ME management involves monitoring, recording and regulating behaviours in accordance with a treatment plan, including sleep and activity.

I use a timer. Once the half hour goes you use the card and then every week you get to upgrade half. . .. And then you get more cards so more time, um, and that works a lot, but if I’m round my dad’s for example I still time how much I’ve done. I will just take it away from my red time. (Willow, KS2)
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Oh, good grief. These families have got enough to be dealing with, without cards that upgrade each week and colour-coded time.

This meant that families found it ‘challenging’ or ‘impossible’ (Zoe’s parent, KS1) to monitor and restrict activities and frequently reported giving up on the activity diaries. Instead, families made macro adjustments to family life and structured the child’s environment to be conducive to sedentary behaviour, for example having ‘pyjama days’ (Sophia, KS2), where families stayed in the house rather than going-out or swapping physically exerting transport such as cycling and walking, for driving.
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Yay for the families. I guess the children had the same reaction to their activities diaries as we did to Getset Julie.
 
Integrating wearable technology into CFS/ME interventions may be a solution for supporting children to self-monitor and self-regulate activity and sleep behaviours.
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Wearable technology could indeed be useful in helping children/young people with ME/CFS manage their activity levels. But you just know that, in the hands of these clinicians, it could end badly.

Wearable technology has the potential to feedback accurate data about a child’s health, or adherence to the intervention, without placing a burden on the parent or child to actively monitor behaviours. .... Child-centred design principles could be incorporated, such as rewards and gamification
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I can imagine them trying to get a child to sleep less or get to school, with a promised reward.

This was good though:
The role of social support in coping is well documented (Ozbay et al., 2007), and parents/carers expressed a desire to meet with other families living with CFS/ME. The clinical service could facilitate this, for example, through sharing contact details or by running group sessions.
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Hutan said:
Treatment? What treatment?
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I echo this.

Despite what the out going NICE guidelines say, there are no evidenced treatments for people with ME or ME/CFS of any age. Anyone attempting anything other [than] symptom management is undertaking experimental intervention and should only do this with appropriate ethical approval and fully informed consent.

The research into CBT aimed at treating the underlying condition, ie PACE, clearly indicates this is ineffective. Further I am not aware of any research into CBT aimed at helping people with ME adjust/adapt. So given the survey evidence raises concerns about CBT in general in relation to ME, anyone considering supportive CBT because it seems to help adjustment/coping in other conditions should proceed with utmost caution.

This paper seems rather to be putting the cart before the horse.
 
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As an adult with ME I also tried this strictly timed management business & diary approach.

I suggest that anyone suggesting this approach to others, be they children or adults, try it and follow it strictly.

The reality means that you end up watching the clock constantly. First because the time allowed is too little & you can't achieve much before having to drop the task and eventually you're clock watching because it's too long and you need to stop and rest but have more time left.

It means that throughout the day you are constantly being reminded you have ME and are limited by the clock watching. This is on top of the constant reminder of feeling so utterly awful that we have anyway. To a child this must be very punitive.

Keeping a diary, while I accept some find it useful for a while, can leave others frustrated and downhearted because it keeps you focussed on the symptoms instead of letting you focus on maximizing what you can achieve in a way that suits you. It reminds me of unnecessarily harsh, old fashioned dog training where the puppy's nose was supposed to be rubbed in it's "mess" as opposed to simply showing the poor dog what you wanted and encouraging him to do that.

As for family pyjama days - that sounds like a wonderful idea to me. Very bonding. If a family is supposed to go out hiking and biking etc, then why not sofa surfing. Isn't that why it's supposed to be called "life balance"? Or is avoidance of these sessions another way of penalizing the child - if you can't keep up with us, you'll be left alone.
 
3+ decades of this and they are still doing the exact same things. Over and over again. Always identical. The same experiments or studies every damn time. Always asking the same questions. Always getting answers they don't like. Always spinning those answers to fit with the exact same conclusions they have started with, selectively framed out of cherry-picked bits. Always supporting the need to continue asking the same questions and writing the same conclusions. All because funding for this is limitless along with infinite tolerance for failure and neither oversight nor accountability.

I will say this plainly and bluntly: this is child abuse. Medical gaslighting is immoral with consenting adults. Most adults do not consent to this but are nonetheless forced into either complying or being abandoned, usually both, making it wildly more immoral. Children cannot consent or dissent. This is unacceptable, ethically, morally. I am disgusted by everyone involved in this, your conscience is stained.
 
You can drive a horse and cart through most of the papers quoted.

The concept of an asymmetric power relationship seems lost. When you have the very real consequences of failure to attend, an expectation of progressive, linear improvement , and so little understanding , diaries, questionnaires and responses are more likely to be tailored to expectations.

This is dire.
 
i never had the energy to fill in a daily diary if i did i am pretty certain that they would accuse me of symptom focussing damned if you do damned if you don't . the joys of having your cake and eating it seems to be the mainstay of these muppets .
 
alktipping said:
i never had the energy to fill in a daily diary if i did i am pretty certain that they would accuse me of symptom focussing damned if you do damned if you don't . the joys of having your cake and eating it seems to be the mainstay of these muppets .
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Perhaps that is the real test. If you have sufficient energy and focus to comply with the expectations or demands, you don't have ME.
 
Treatments recommended by National Institute for Health Care Excellence (NICE 2007) include Cognitive Behavioural Therapy (CBT) and behavioural approaches (Graded Exercise Therapy, GET, and activity management) (Brigden et al., 2017). All treatments offer advice on sleep, symptom management and co-morbidities such as mood disorders and pain. CBT, which has the strongest evidence base (Al-Haggar et al., 2006; Chalder et al., 2010; Lloyd et al., 2012; Nijhof et al., 2012; Stulemeijer et al., 2005), supports the young person to identify and change fatigue-related cognitions and gradually resume activities (Brigden et al., 2017). GET aims to stabilise physical activity levels, before gradually increasing activity at a manageable rate (White et al., 2007). Activity Management is a goal-oriented and person-centred approach which establishes a baseline for all activity (physical, cognitive and emotional), which is then increased (White et al., 2007).
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My bold

Bioethics is meanless to the authors and those who approved the study. We have measurable proof Graded Exercise Therapy causes harm.
https://workwellfoundation.org/wp-c...T-Letter-to-Health-Care-Providers-v4-30-2.pdf

We see CBT and GET as the treatments used in this study and only advice is being given. Did anyone see a medication list?

The two KS1 children couldn’t remember or appeared not to understand the description of the illness their clinician had provided, such as the analogy of fatigue being like a battery, and were unsure about aspects of treatment such as medication ‘I don’t know what the tablets are for’ (Leo, KS1).
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My bold

Did I misread something? What was medication being given to a child ages 5 to 7 years? Were medications disclosed as part of the treatments?

Parents commonly talked about the added complexity of their child having co-morbid conditions. Some felt the CFS/ME service did not always address this complexity, and that the care for CFS/ME and other conditions was disjointed. Some wanted more medical management others wanted more psychological input

I was quite surprised there wasn’t more in the way of psychological support offered. . . because of all the anxiety and low mood that she’s had hand in hand with it all. (Sophia’s parent, KS2).
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Was medical management related to medication given to a different child?
 
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