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
:
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 ...
