Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood


Patient in training
For what it's worth.

Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

  1. Amberly Brigden1,
  2. Maria Loades1,2,3,
  3. Anna Abbott3,
  4. Joanne Bond-Kendall3,
  5. Esther Crawley1

Paediatric chronic fatigue syndrome or myalgic encephalomyelitis affects at least 1% of secondary school children in the UK and is very disabling. Treatment is effective but few children get a diagnosis or access treatment. This paper summarises what we currently know about diagnosing and treating this important illness in childhood

note: it is behind a pay wall. I did not look for the full text.
Best to read this one on an empty stomach.

The lack of a citation for the supposed effectiveness of treatment is interesting:
Having a child with CFS/ME affects the whole family and is costly for the National Health Service (NHS). Specialist treatment is effective, and therefore making a diagnosis and ensuring children can access treatment is important.

Wow, they mention PEM! But not the lack of it used in recruiting patients for the studies they get their data from. And no clue about what constitutes severe ME, as usual:
Postexertional malaise is a core symptom and is an increase in fatigue and symptoms after doing more than usual. For most children, this means that they miss time off school at the end of the week. In those who are severely affected they may have an increase in symptoms after a small amount of activity such as walking down stairs.

Ah, some citations for the claims about the benefits of the quack clinics. Notably, they don't include broad claims of "effectiveness" now:
Diagnosis and referral is valued by families affected by CFS/ME; mothers reported finding specialist CFS/ME services useful in recognising and acknowledging their child’s condition and opening channels of dialogue between healthcare professionals and education providers. Adolescents report that specialist medical care results in better symptom management.

Also a bit of a switch from stair-climbing exhaustion being the litmus test for severe CFS:
A young person is deemed to have severe CFS/ME if he or she is unable to do activities for themselves, can only carry out minimal daily tasks, or if he or she has severe cognitive difficulties and depends on a wheelchair for mobility.

They seem to be badly abusing the requirement of post-exertional "malaise or fatigue" in NICE, and are also misstating the suggestion to look for another diagnosis only if none of the listed symptoms or missing, rather than any of them:

But what's the actual management recommended? No shockers here, just more idiocy and insinuations regarding fat neurotic kids staying up all night:
NICE recommends that children with CFS/ME are offered either cognitive behavioural therapy (CBT), activity management or graded exercise therapy (GET). These approaches should also include advice on sleep and symptom management. Some young people present with complex presentations, so individualised management plans1 should be developed including treatment for comorbidities such as mood disorders, eating difficulties and obesity. Clinicians may also address more systemic issues such as how the CFS/ME affects family members28 and how families should be involved in treatment.

CBT has not been proven effective in any ME patients, due to poor methodology. But at least they agree there's no support for GET in kids:
The largest evidence-base is for CBT-type interventions; five randomised controlled trials of CBT for CFS/ME in adolescents have shown that it is an effective treatment approach. There is a limited evidence base for GET. Although there are several trials in adults, there are no trials investigating GET in the outpatient setting.

Yet the recommendation is apparently to do GET, unless the kid is a head case (or, you know, actually ill and disabled) and has to be brainwashed first:
Activity management and GET are behavioural approaches that work on changing the boom–bust pattern of activity (or exercise in GET) to a more stable ‘baseline’ before increasing it. For children and families with more complex needs (such as comorbid mood disorders) and for those who find change too difficult, CBT may be the more appropriate treatment; it includes the behavioural elements but also uses cognitive approaches to support psychological needs and encourage behaviour change.

This is badly misleading. "Boom" days are active only relative to the bad days. Kids with ME are not being over active in any normal sense of the word on those days:
Activity management is delivered by multidisciplinary health professionals (including occupational therapists, physiotherapists, nurses and psychologists). This behavioural intervention targets the ‘boom–bust’ pattern of activity; fluctuations of over activity and underactivity, where young people engage in high levels of activity on ‘good’ days with consequential ‘bad’ days of low activity, as shown in figure 1.

The magical Figure 1, with the usual complete failure to grasp or reflect reality:

This still under the heading of Activity Management, which is apparently separated from GET. I don't see the distinction, except that it's done without the precautions of GET, without an expert, and presumably without the bad reputation of GET:
When participants have achieved their baseline, they are supported to increase this. NICE guidance recommends a gradual increase. Studies have used different approaches, most studies increase activity by 10%–20% each week with a gradual return to school if this is the child’s goal, and to normal social activity. Activity management should be structured, tailored to the child’s goals, active and an incremental approach to rehabilitation. Therapists discuss problems encountered by participants and provide possible solutions. Setbacks are discussed and managed by appropriately adapting behavioural plans.

I frankly do not understand the distinction from their Activity Management, nor why Activity Management is exempt from precautions described for GET. But at least the mild-moderate qualification excludes anyone who has symptoms from walking down a flight of stairs, based on their definition in the intro :rolleyes::
Graded exercise therapy (GET) uses a similar approach but focuses only on exercise. This means that there needs to be an appropriate physical assessment, with goal setting and a rehabilitation plan created based on physical goals. It should be prescribed by a suitably qualified/trained therapist and should be offered to young people with mild or moderate CFS/ME.

This isn't GET, it's pacing:
GET probably works in several ways. For some, GET stops children and young people doing too much exercise on good days and helps to establish a consistent amount of physical activity every day.

And this is speculative bullshit based on the effects of exercise in healthy people. Objective GET data from adult studies disproves it in the case of ME as well:
For other children, it helps them to gain stamina and increase their cardiovascular tolerance to exercising.

Unlike the Activity Management victims, the GET victims get a heart rate monitor, with thresholds that most ME patients will exceed just standing up and walking across the room:
The GET programme starts at a low intensity. Walking is the easiest exercise to access as it is functional and cheap. The walk duration is initially set by the therapist following an assessment of the young person’s current ability. The walk should be carried out at their own steady pace with a heart rate between 40% and 50% of their maximum heart rate and be continuous. This should be carried out at least five times a week. Once this has been achieved and maintained, without a daily fluctuation in overall activity levels, the young person can increase the duration of the walk to reach 30 minutes. This is done carefully with a graduated approach, increasing 10%–25% every 3–14 days. Once the young person is able to carry out 30 minutes of low intensity exercise 5–7 days a week, they can begin to increase the intensity of the walk, using interval training. The training heart rate will aim to rise between 50% and 70% of their maximum heart rate. Using a heart rate monitor can avoid over exercising which can lead to an exacerbation in symptoms. The graded exercise model is displayed in figure 2.

It's normal for the treatment to make you think you're sicker, but you aren't, so it's okay. You might just need to do a bit less:
It is important to warn the young person and their parents that there can be a slight increase in symptoms when physical activity levels are increased which is normal. Frequent assessments are used to check that the young person is not over doing it. Children are warned that a reduction in function may mean the baseline needs to be reassessed.

The use of technology (activity monitors/pedometers/heart rate monitors) can help the young person to understand the principles of GET and aid them to monitor and adjust their individual programme.

To be continued ...


Senior Member
" . . mothers reported finding specialist CFS/ME services useful in recognising and acknowledging their child’s condition. . ."

Am I wrong in speculating that there is an insidious reason behind their emphasizing "mothers", rather than "parents"? :meh:
The cognitive-behavioral model may suggest this, but it's unsupported by evidence, and contradicted by a lot more evidence:
The CB model of CFS/ME suggests that although fatigue is triggered by (for example) an infection, it is maintained by behavioural responses to fatigue such as overexertion or excessive rest and emotional factors such as depression, frustration and anxiety.

I fail to see what's wrong with anyone (healthy or ill) resting in response to fatigue:
CBT aims to counter the cognitive and behavioural factors that maintain fatigue. When a child experiences chronic fatigue, they change what they do (eg, by reducing activity levels), driven by thoughts such as ‘I need to rest to recover’. A graded approach to stabilising and then increasing activity (physical and mental) and sleep management strategies are used to tackle the behavioural cycles.

There's no proof that resting in response to fatigue is ever unhelpful:
Identifying and challenging unhelpful cognitions and developing more helpful cognitions is done with the behavioural programme. Cognitive processes are tackled by shifting attention away from the symptom of fatigue using attentional retraining principles.

It's also normal to feel consistently fatigued when you have a biomedical illness, and they aren't going to change the illness by ignoring symptoms of it:
Children and families are reminded that it is normal to feel tired at times, just not consistently so and not to the extent of significantly limiting functioning. Therefore, the aim of treatment is not for an individual never to be tired again; instead, the aim is for the child to be capable of doing everything that they want to do, which typically includes a return to fulltime education.

Put pressure on the parents to put pressure on the children. And it gives them someone else to blame when the quackery fails:
Parents are commonly involved in treatment sessions.

I'm also not sure why CBT only talks about fatigue. It's completely ignoring the core symptom of PEM, as well as other autonomic, muscular, immune, and nervous system symptoms.

A complete failure to understand or acknowledge the biomedical forces behind sleep disturbances, and a consequent recommendation to torture the child in yet another manner:
The most important strategies are to reduce excessive sleeping as this will improve sleep architecture. Clinicians should agree the maximum number of hours the young person will sleep and then set a wake-up time. The going to sleep time can be calculated by subtracting the maximum time from this.

Pain is presumed psychological, and it's mostly up to the patient to stop feeling it:
If chronic pain is a predominant feature, clinicians should consider referral to a specialist pain management clinic. Psychological treatments for pain are principally, but not exclusively, cognitive and behavioural treatments. These treatments encourage active engagement and self-management by the young person with behavioural strategies to support normal daily activities, an increased awareness of the role of cognition in suffering, a focus on the self-regulation of emotion and the use of techniques for reducing aversive arousal (eg, relaxation).

This isn't true, unless you ignore actual diagnostic thresholds for depression or anxiety, or that the children have a disabling biomedical disease:
Depression and anxiety are more common in children with CFS/ ME than in the general population, and are associated with markers of disease severity.

Their patients say their subclinical depression or anxiety is reactionary, but that's no reason to believe them, apparently:
In qualitative studies, the majority (but not all) of the young people interviewed, described their CFS/ME as preceding either their depression or anxiety. However, the direction of causality is not known.

No interest in finding out why the kids can't eat, let's just use it as another way to blame them and their families if they get sicker:
An estimated 10% of young people with CFS/ME who access specialist services experience eating difficulties, which can have a significant impact on their quality of life, illness and on their families. Not eating increases fatigue, low mood and anxiety which further exacerbates the eating difficulties.

More lies from Crawley:
The largest trial to date demonstrated that most children with CFS/ME will recover within 6 to 12 months if they receive internet-delivered CBT as treatment. For those who do not receive specialist care, recovery is much slower with less than 10% recovering at 6 months.

The usual plug for better/different CBT/GET, and now some recovery numbers which contradict the earlier ones:
We need to develop better treatments for children with CFS/ME because even with the best treatments available, approximately 35% will still be ill after 6 months.

And finally, a plug for Action for ME. They need a motto, something like "The Fatigue Charity that 9 out of 10 quacks prefer!":
Useful further reading
Action for ME’s webpage on children and young people https://
www. actionforme. org. uk/ children- and- young- people/ introduction.
The lead author is Amberly Brigden, a quack in training under Crawley, which explains her complete ignorance about ME as a biomedical disease, as well as her faith in studies which are methodological junk. The other authors are all from Crawley's fatigue clinic, hence Brigden will likely be joining in their quackery soon as a professional. I'd feel sorry for her career being about to end before it even gets started, with the widespread debunking of their psychosocial nonsense, but I'd feel even sorrier for any patients she "treated".

Aside from the authors, here's who to blame for this disgusting piece of crap that somehow got published:
Acknowledgements EC was funded by the NIHR (Senior Research Fellowship,
SRF-2013-06-013). Dr Loades is funded by the NIHR (Doctoral Research Fellowship, DRF-2016-09-021). This report is independent research. The views expressed in this publication are those of the authors(s) and not necessarily those of the NHS, The National Institute for Health Research or the Department of Health. Thank you to Dr Melanie Parker for providing an overview of the medical management of pain and sleep.

This is one of the worst pieces of psychobabble I've seen in a while, which certainly explains the paywall.

But in addition to the usual quackery we're all familiar with, they're venturing into very dangerous territory with promoting "Activity Management" as a completely unregulated alternative to GET. No safety measures, no objective evaluations ... just have a go, and do the same things as GET. But since it's not called GET, they seem to think aren't being negligent by ignoring NICE's recommendations for GET.

It's rebranding, because GET is a failure. But it's also an attempt to slide out from under the harm GET can do, and taking responsibility for it. Activity Management has no data showing effectiveness or safety, yet they act as if it's much safer than their supposedly already completely safe GET.
Did I misread or are they referring to their 'treatment' as 'Specialist Medical Care'?:
'Adolescents report that specialist medical care results in better symptom management.'

Is this the same as the 'Specialist Medical Care' that was deemed ineffective by PACE in comparison to CBT/GET or is this just a shifting term used for whatever they are dishing out at the time?

eta::confused: Crawleys specialist medical care IS CBT/GET:confused:


Senior Member
New Zealand
The most important strategies are to reduce excessive sleeping as this will improve sleep architecture. Clinicians should agree the maximum number of hours the young person will sleep and then set a wake-up time. The going to sleep time can be calculated by subtracting the maximum time from this.

Perhaps now that this complex algebraic manipulation has been sorted
i.e. (Wake uptime - allowed hours of sleep = Going-to-sleep time),
the authors might like to explain how the 'clinicians' agree on the hours of sleep the young person is allowed.

Where is the evidence that young people with ME do not need the length of sleep that their bodies are telling them to have?

Large Donner

Senior Member
" . . mothers reported finding specialist CFS/ME services useful in recognising and acknowledging their child’s condition. . ."

The same kind of mothers that go to psychic medium shows in the evening and cant see through the BS of the stage performer? Interesting how they use the phrase mothers without actually giving a percentage figure.

So it could be one uninformed well meaning desperate mother out of a hundred until she wakes up and sees it for what it is but by then her kids are compromised and so is she under the powers of a state register at risk of her child being diagnosed with PRS.

I just find such phrases so see through like the previous Esther Crawley "children want GET" to garner support for yet another GET trial. That's like saying children want cigarettes as justification for funding to test cigarettes out on children whilst parading the Marlboro man in front of them saying how cool and handsome he is.

How anyone can pass this off as science and get funded is beyond me, its no better than the shopping channel.
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The wise nematode hibernates
" . . mothers reported finding specialist CFS/ME services useful in recognising and acknowledging their child’s condition. . ."

Am I wrong in speculating that there is an insidious reason behind their emphasizing "mothers", rather than "parents"? :meh:

According to the Wikepedia entry for Munchausen Syndrome by Proxy
One study showed that in 93 percent of MSbP cases, the abuser is the mother or another female guardian or caregiver.[12]

Fathers and other male caregivers have been the perpetrators in only 7% of the cases studied.[10]

So it serves Esther Crawley well to concentrate on the mothers and ignore the fathers as insurance for the future when she'll be needing to find someone else to blame when her "management" fails.


Senior Member
So it could be one uninformed well meaning desperate mother out of a hundred until she wakes up and sees it for what it is

Interesting view, @Large Donner.

I saw the singling out of "mothers" as feeding into the image of the neurotic, overbearing female, whose very behaviour was potentially enabling the child's "false illness beliefs". Nothing would make such an individual happier than to be acknowledged (and therefore validated) by a "specialist". That was my take on their wording.

Regardless, it made me uncomfortable - as if the whole of @Valentijn's excellent review of a BS paper wasn't unsettling enough . . .


Senior Member
"diagnosis and referral is valued by families.........specialist service recognising and acknowledging the childs condition"

exactly the same for adults if you are dealing with an employer or benefits you absolutely need a diagnosis - and having a referral to the hospital "specialist" service gives more weight to it.

That is all. What the specialist service does with you is of minimal or no interest to them they just want the rubber stamp that it is a kosher illness, and that you are following whatever "treatment" the NHS is offering. I asked my GP for a referral despite having read the patient surveys purely to be seen to do the right thing and i was reasonably confident about not being pushed into exercise. it was a tick box exercise on my part to keep my employer on side with reduced hours and very long phased return. unfortunately the other participants on my course hadnt even heard of AFME let alone any other more enlightened organisations. And of course if I was a parent I wouldnt have put a young person into that position deliberately knowing what I knew.


Senior Member
ok so it is all a fudge but NICE guidelines do actually say that GET should use heart rate monitors, this is only mentioned as an afterthought in the paper

Also I cant see anywhere that reflects as in NICE that GET is appropriate only for people with mild/moderate "CFS/ME".

This woman is fudgier than a fudge factory