Sleep Quality in Adolescents With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) 2017 Josev et al

Cheshire · Oct 23, 2017

Elisha K. Josev; Melinda L. Jackson, Bei Bei, John Trinder, Adrienne Harvey, Cathriona Clarke, Kelli Snodgrass, MD
Adam Scheinberg, MMed (Clin Epi)
Sarah J. Knight, PhD

Journal of Clinical Sleep Medicine

Study Objectives
Little is known about the type and severity of sleep disturbances in the pediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) population, compared with healthy adolescents. Using a range of objective and subjective measures, the aim of this study was to investigate sleep quality, the relationship between objective and subjective measures of sleep quality, and their associations with anxiety in adolescents with CFS/ME compared with healthy controls.

Methods
Twenty-one adolescents with CFS/ME aged 13 to 18 years (mean age 15.57 ± 1.40), and 145 healthy adolescents aged 13 to 18 years (mean age 16.2 ± 1.00) wore actigraphy watches continuously for 2 weeks to collect a number of objective sleep variables. The Pittsburgh Sleep Quality Index was used to obtain a subjective measure of sleep quality. Anxiety was measured by the Spence Children's Anxiety scale.

Results
On average over the 2-week period, adolescents with CFS/ME were found to have (1) significantly longer objective sleep onset latency, time in bed, total sleep time, and a later rise time (all P < .005), and (2) significantly poorer subjective sleep quality (P < .001), compared with healthy adolescents. The CFS/ME patient group displayed higher levels of anxiety (P < .05), and in both groups, higher levels of anxiety were significantly related to poorer subjective sleep quality (P < .001).

Conclusions
This study provides objective and subjective evidence of sleep disturbance in adolescents with CFS/ME compared with healthy adolescent controls.
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http://jcsm.aasm.org/ViewAbstract.aspx?pid=31079

(Not available yet on Scihub)

Article in Cosmos about this study:
Chronic fatigue syndrome symptoms confirmed
https://cosmosmagazine.com/biology/chronic-fatigue-syndrome-symptoms-confirmed

Andy · Dec 13, 2017

Article in Sleep Review Magazine

Chronic fatigue syndrome (CFS), also called myalgic encephalomeyelitis (ME), is a chronic illness that affects up to 2.5 million Americans and is characterized by extreme fatigue that doesn’t improve with rest.

A recent study published in the Journal of Clinical Sleep Medicine has found that teens with chronic fatigue syndrome experience more sleep disturbances than those in a healthy control group, which could lead to poorer quality of life and impaired development. Other studies have shown the illness to also be linked to obesity, eating difficulties, and chronic widespread pain.

“Pediatric CFS/ME is a debilitating and poorly understood condition that can cause an adverse functional impact during a critical phase of development, typically adolescence between 10 and 19 years,” says Elisha Josev, lead author of the study. “The consequences of this condition can be different in adolescents compared to adults, including impacts on school functioning and school attendance, socializing, and vocational prospects.”
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http://www.sleepreviewmag.com/2017/12/adolescents-chronic-fatigue-syndrome-sleep-disturbances/

Hutan · Sep 25, 2024

An old study, but still influential I think, driving recommendations for sleep hygiene including forcing a particular sleep onset time and reducing sleep hours in young people with ME/CFS.

From the Cosmos magazine article linked above:

Chronic fatigue syndrome symptoms confirmed

Sleep problems reported by young people with chronic fatigue syndrome (CFS) have been confirmed by electronic monitoring, opening the way for more accurate diagnosis of the condition.

Researchers at the Murdoch Children’s Research Institute in Melbourne, Australia, enrolled a small group of teenagers with CFS and kitted each of them out with an actigraphy watch – a device that monitors motor activity and sleep patterns.

During a two week trial, the data showed that the volunteers took longer to fall asleep than unaffected adolescents. They also slept longer and rose later. The electronic findings correlated with the participants’ self-reports, which also indicated poor sleep quality.

The objective measures achieved through using the actigraphy sensors are important because CFS diagnosis based on GP assessment is often an unreliable affair.

....

The Murdoch study – published in The Journal of Sleep Medicine – will assist in establishing better objective measures for identifying CFS.

In Australia, the condition affects one in 1000 children and adolescents, and its onset can produce long term problems.

“The onset of CFS in adolescence occurs at an important time of brain maturation, and academic, social and physical development,” says lead researcher Elisha Josev.

“Treating sleep disturbance and promoting good sleep hygiene, such as avoiding caffeine close to bedtime and maintaining a regular sleep schedule, may not only be important for adolescents’ development, but may also have the benefit of reducing exacerbation of their other CFS symptoms.”
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I don't think identifying that a young person sleeps longer hours than normal or has a delayed sleep onset diagnoses ME/CFS. I suspect that there were biases in the selection of the young people for the control arm - I doubt that the parents of a child with an unusual sleep pattern would sign their child up to be a healthy control in a sleep study, nor do I think that the researchers would have selected them.

We know the child with ME/CFS is ill because their function is affected. This study doesn't answer a more useful question - does their sleep pattern differ from young people with other chronic debilitating illnesses that often prevent school attendance?

Some of these researchers have been involved in a number of other psychopathology-ish studies; they help prop up psycho-behavioural interventions at the Royal Children's Hospital in Melbourne and beyond.

I don't have time to read the paper now, but it could be useful to examine the paper closely.

rvallee · Sep 26, 2024

I had huge problems with falling asleep since the age of 7. It's not as bad now as it used to be, but it used to take me 4+ hours to fall asleep, sometimes even more, especially when I was a teenager. I also had chronic fatigue during that time. Not CFS. Fatigue, chronically. I was still able to function for the most part, just tended to sleep very late on the week-ends and be tired most of the time, but I was still active, did lots of sports and activities.

But I most definitely did not have anything remotely like ME/CFS. In fact I probably had what is the typical model of what the biopsychosocial model of chronic fatigue tries, and fails miserably, to account for. I actually did ask my GP. It was definitely abnormal. But it never interfered much with my life beyond sleep, although I was very (normal) tired at school and didn't study much at home (in part) because of it.

The level of understanding for those issues isn't much more advanced than what the ancient Egyptians knew about the cosmos. There are lights when you look up at the sky at night. They twinkle. Some move fast. Some move slowly. Some move very slowly. Some of those movements are regular. There are different colors. There is the Moon, and there is the Sun. And that's about the gist of what they knew. It can fit in a reasonably-sized paragraph, one page tops. Which is about as substantial as modern medical knowledge about all those chronic health issues. What a waste.

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