Self-Management of Chronic Fatigue Syndrome in Adolescents, 2020, Katherine Rowe et al

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https://www.intechopen.com/online-first/self-management-of-chronic-fatigue-syndrome-in-adolescents

Open access peer-reviewed chapter - ONLINE FIRST

Self-Management of Chronic Fatigue Syndrome in Adolescents
By Katherine Rowe, Amanda Apple and Fiona McDonald

Submitted: November 6th 2019Reviewed: January 29th 2020Published: February 28th 2020

DOI: 10.5772/intechopen.91413

Home > Books > Pediatric Neurology [Working Title]

Abstract
Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a condition of unknown aetiology that commonly follows an infection. There are no known predictors for recovery or established treatments. At the Royal Children’s Hospital (RCH) in Melbourne, Australia, the majority of young people with CFS are provided with symptom management and lifestyle guidance in an outpatient setting. However, for some, educational or social issues preclude progress and for those who request this assistance, since 2012, the Victorian Paediatric Rehabilitation Service has offered an Intensive Self-Management Program. For this program, participants engage in both group and individual sessions, attending 3 days per week for 4 weeks in small groups of 3–4. Interdisciplinary input is from Occupational Therapy, Physiotherapy, Education and Psychology to assist with goal setting and strategies. Outcome measures are obtained at initial assessment, 6 weeks and 6 months post-program. Support is offered for 12 months post-program. For both the outpatient program and the intensive program the outcomes and feedback from patient and family has influenced the approach and focus. This chapter outlines the current approach and how it has evolved over time.

Keywords
  • adolescent
  • chronic fatigue syndrome
  • management
  • rehabilitation
  • outcomes
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I've not read the whole thing -

Support is offered for 12 months post-program. For both the outpatient program and the intensive program the outcomes and feedback from patient and family has influenced the approach and focus.
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For the newly ill, you're still very much in a learning curve (adults at least). So things may temporarily seem to be improving but may not be sustainable. So you might find certain prioritization perfectly acceptable in the short term but as that rolls into years it may no longer feasible or acceptable.

We think there is a possibility that some youngsters will pretty much spontaneously recover. Those individuals might inflate the success rate of this intervention.

A year in the time frame of ME is nothing. Of young people who do recover there is anecdotal evidence that some relapse later in life. Possibly late 20s or early 30s. It would be of some benefit to monitor patients in the long term.

We can't discount the possibility that in the ambition to return to "normal" life we might be condemning some people to long terms and severe disability in later life. Again long term monitoring would provide some useful information.
 
This is an interesting read from a sympathetic clinician who has worked with young people with ME for many years.


It's good to see this acknowledged:
Anxiety and depression may also be present but when compared with population levels, were only mildly increased in prevalence, and generally did not precede the illness. They were understandably associated with diagnosis delay, not being believed or social isolation [8, 10].
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The clinic started in 1989.
In the early years of the clinic ... Irrespective of whether EBV was confirmed, it was assumed in some cases, that this was the cause of these symptoms. Alternative explanations that were entertained were depression, stress, school refusal or somatisation disorder or the possibility of undisclosed family difficulties. Parents who were anxious due to concern about the unexplained change in the young person were often considered to be contributing to their illness. Hence many who attended the clinic had experienced unsatisfying encounters with the medical profession.
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My son attended the clinic in 2014 - this was still the case in Melbourne at that time. I'd be surprised if attitudes in the medical profession have changed materially since then.

Nice also to see the acknowledgement that ME/CFS isn't just a cultural construct:
These symptoms were consistently reported even though at the time there was no access to this information in the public arena.
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The 'requirements' of the management plan (with social, academic and physical components) are fairly pragmatic:
Re the academic component:
Reduction in the school subject load to include subjects and teachers they liked, as well as subjects that are pre-requisites for what they want to do as a career is crucial. Trying to keep up with all subjects when only given minimal information is a source of unnecessary stress, and this rarely succeeds. ... If the symptoms are severe, the extent of ‘academic input’ may be reduced to reading about a hobby or reading a story that they are already familiar with.
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I want to note that I hadn't read the whole paper when I posted above. I have concerns about the rehabilitation program discussed in the second half of the paper with seems to involve CBT and exercise and was started in 2012. It seems to me that the selection of participants and the demanding nature of the program results in young people who are recovering being the ones who do the program. Given my experience with my daughter and her recovery, I suspect that most of the participants would have improved regardless.

From outpatients, it was noted that early referrals to the program were often not appropriate. Young people and their families needed time to understand the illness, develop some confidence that they could plan an appropriate schedule and sustain it, and have an opportunity to improve some of the more troublesome symptoms, such as sleep disturbance and headache.
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From the paper it sounds as though the program was most useful for young people who were recovering and needed some help to negotiate a return to the education system.

In essence those referred and reporting benefit from the program where (sic) those who needed more support in planning their self-management, more intensive assistance for their POTS but most importantly assistance with their education.
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My son wasn't offered the rehabilitation program, which was described to us as a residential program, as it was felt that he was coping well. He was given a prescription for melatonin and Ritalin and told to come back in 4 months. A letter for the school that he planned to attend the following year was provided, which was useful. My son decided it was all a waste of time and chose not to return to the service which was called the 'Fatigue Clinic' and was located in the mental health part of the Royal Childrens Hospital.
 
Oh, don't get me started LCL. :)
I think the thinking is - you're fatigued, so you need a stimulant. I'm not sure it's much better thinking than that.

My son does not and did not have symptoms of ADHD; Ritalin just seemed to be a standard thing that was handed out. I was appalled that it was prescribed along with a followup appointment in 4 months' time. 4 months, during which time my son was planning to change from homeschooled to full-time school... (needless to say, that didn't end well).

But anyway, my son tried the ritalin and decided he preferred coffee. I'm aware of the KPAX trial of ritalin and vitamins that had a null result.
 
This is a rehab, CBT, GET program. i wonder what happens with the children that cannot keep up with this regimen and who cannot achieve the goals despite doing all they can to reach them? Are they ostracized and are they punished by removing access to care and services?
 
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ladycatlover said:
Thanks @Hutan for your reply. I've never really "got" why Ritalin was a good idea for kids with ADHD - seems a bit counter intuitive. But what do I know! (Nothing, just to be really clear)
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ADD is caused by the "brake" part of the brain being underactive. Stimulating that part slows things down enough that attention can be better controlled.

There is no doubt that that ADHD is overdiagnosed. There is too much attention paid to the hyperactivity component; like us and fatigue hyperactivity has different causes and many people have attention deficit without traditional hyperactivity.

We were told my son could not have ADD because he could watch a TV programme, but ADD is a twofold disease in that not only does attention bounce about but when it is caught it can be hard to shift it again.

So the situation is like ME. Because the emphasis is on the wrong symptom people without the disease are said to have it and treated inappropriately while people who do have it are neglected by medicine because it is diagnosed wrongly. Got that of my chest :)

In ME, the feeling of fatigue may well be protective so anything that reduces it could lead to bad harm. Just think of a child who thinks they can attend school because of the medication but the disease is still there so they end up bed bound for years. Prescribing ritalin is a horrendous risk and show how ignorant so many medics are about the history and reality of ME.
 
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