Activity measurement in pediatric chronic fatigue syndrome, 2020, Jason et al

[Andy]

Objectives
Individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) experience debilitating symptoms, including post-exertional malaise, an intensification of symptoms after physical or cognitive exertion. Previous studies found differences in the activity levels and patterns of activity among individuals with ME and CFS, compared to healthy controls; however, limited research exists on the activity levels of pediatric patients. The objective of this study was to examine differences in activity between healthy children and youth with ME and CFS.

Methods
The present study examines the objective (i.e., ActiGraphy) and self-reported levels of activity among children (ages 5 to 17) enrolled in a community-based study of pediatric CFS.

Results
Children with ME and CFS evidenced lower activity levels than healthy control children. Moreover, participants with ME and CFS evidenced increased nighttime activity and delayed initiation of daytime activity. Participants’ self-reported activity data significantly correlated with their ActiGraph data, suggesting that children with ME and CFS are able to accurately describe their activity level.

Discussion
This study highlights differences in activity level and diurnal/nocturnal activity patterns between healthy children and those with ME and CFS. These differences should be considered in identifying appropriate supports and accommodations for children with ME and CFS.

Paywall, https://journals.sagepub.com/doi/10.1177/1742395320949613
Sci hub, https://sci-hub.tw/10.1177/1742395320949613

 

[ME/CFS Skeptic]

It would be easier if the data was presented in the abstract.

individuals who met the Fukuda et al. CFS criteria5 (M = 315,716, SD = 150,215) were significantly less active than healthy controls (M = 447,806, SD = 301,683).

There was a significant correlation between ActiGraph data and the MAQ, r = .521, p < .001, n = 50, but the correlation between ActiGraph data and FSS score was not significant, r = .181, p = .212, n = 50.

Interesting that fatigue severity didn't correlate well with the actigraphy, in contrast to an activity questionnaire. That seems to suggest that it isn't so much fatigue that determines patients' activity level and supports moving away from this symptom as the central feature of the illness.

 

[Hoopoe]

In my opinion the fatigue severity scale poorly measures absolute fatigue. Measuring daily activity is probably much more accurate, especially if other reasons for low activity level are controlled for.

Anyway I think exertion intolerance is the key feature, not fatigue.

 

[Hutan]

From Leonard Jason's group.

Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) affect over one million persons in the United States.

I find this separation a bit odd - I don't think there's enough evidence to differentiate two conditions.

Analyses examined whether ActiGraph data could differentiate the activity levels of children diagnosed with CFS (diagnosed by the Fukuda et al. CFS criteria, the most commonly-used diagnostic criteria for the illness that requires severe fatigue and at least four additional symptoms; the term “CFS” is used to describe this group, as “CFS” is the illness name utilized in the Fukuda et al. CFS case definition) from the activity levels of healthy control children.

. It's not clear if people who met the requirement for both CFS and ME are included in this study.

35 children who met the Fukuda criteria and 15 healthy controls.

Some bias in the samples I think:
Patients: Male 42.9%; Female 57.1%
Controls: Male 60%; Female 40%
I know there's lots of variation, but I think in most Western cultures, female 13 year olds tend to be less active than males.

Also the time of the year worn:
Patients: During the school term 45.7%; school holiday 54.2%
Controls During the school term 33.3%; school holiday 66.7%
The controls were wearing the activity monitor for much more time in the holidays compared to the patients. Normal patterns of activity during school and holidays are different.

 

[Hutan]

Figure 1 suggests that children with CFS have delayed onset of day- time activity and somewhat more nighttime activity than controls, potentially indicative of sleep disruption.

Certainly that's what I would expect. But I'm not sure that Figure 1 really shows a lot of night-time activity. Neither group is doing much between 10 pm and 6 am.



The activity monitor was only worn for one day by each participant. This is acknowledged as a limitation by the authors - behaviour might easily change for a day when the participant knows their activity is being analysed. This could easily be a reason why the activity and fatigue levels didn't correlate.

Correlational analyses suggest that children and adolescents can accurately report upon their activity level when using self-report questionnaires (specifically, the MAQ)

I don't think this finding can be extrapolated beyond this study. Here, the participants had no particular incentive or pressure to report a particular level of activity. That will probably not be the case with most unblinded intervention studies. This paper should not be used to justify self-reporting of activity levels in such studies. If you are going to spend a lot doing a study, spend a bit more to do it properly by using activity monitors (and use them for a lot longer than a day).

 

[Andy]

I find this separation a bit odd - I don't think there's enough evidence to differentiate two conditions.

My bolding

Analyses examined whether ActiGraph data could differentiate the activity levels of children diagnosed with CFS (diagnosed by the Fukuda et al. CFS criteria, the most commonly-used diagnostic criteria for the illness that requires severe fatigue and at least four additional symptoms; the term “CFS” is used to describe this group, as “CFS” is the illness name utilized in the Fukuda et al. CFS case definition) from the activity levels of healthy control children

Children aged 5 to 17 were recruited by calling Chicagoland households. During this phone call, parents (or guardians) were asked to answer questions regarding their children’s health. Children who screened positive (i.e., endorsed symptoms of ME and CFS that were not explained by other illnesses or conditions), as well as age- and gender-matched participants who screened negative (i.e., healthy control children) were invited to phase two of the study.

Phase two consisted of a medical exam and psychological evaluation; children and parents also completed self-report questionnaires. At the end of the appointment, children were asked to wear an ActiGraph monitor for 24 hours. Children and their parents were compensated $150 for their participation ($75 for the parent and $75 for the child).

Following the appointment, an independent panel of physicians reviewed the results of the medical exam, psychological assessment, and self-report measures scores in order to determine whether participants met criteria for ME or CFS.

The current Loiacono et al. 3 study includes children who met the Fukuda et al. (1994) case definition (n=35) and healthy control children (n=15) who agreed to wear an ActiGraph.

Not sure why they are talking about ME though, given that.

 

[Hutan]

Do they note where the participants wore their actigraphs?

They were worn around the waist.

Not sure why they are talking about ME though, given that.

Yeah, it isn't clear from the text if the selection was only of children who met the Fukuda definition but not a definition that they equate with ME. (Fukuda compliance but not CCC compliance) or (Fukuda compliance but not IOM compliance) is potentially quite different to (Fukuda compliance but not excluding those who also met more demanding criteria).

I suspect, given the effort the researchers went to to diagnose against various criteria and apply different labels of CFS and ME, the cohort is (Fukuda compliance but not compliance with a criteria that requires PEM). But the way the Fukuda criteria works, some of the cohort still might have had PEM.

It's not clear. It seems as though they are making their research less useful by trying to work within the confines of a criteria that doesn't mean much. I don't understand why good researchers still use Fukuda.

 

[dreampop]

The activity monitor was only worn for one day by each participant. This is acknowledged as a limitation by the authors - behaviour might easily change for a day when the participant knows their activity is being analysed. This could easily be a reason why the activity and fatigue levels didn't correlate.

It makes no sense to me to do an actigraph over 24-hours.

Alone we know they got $75. Maybe some had fatigue but went out to spend it. Some tucked it away. Already the study messes up the first day of it's results

But also, maybe one just wanted to do more that day regardless of the study. Some days I do more despite having a lot of fatigue! It makes me angry and I go walk or something. I've had days where I've done a great deal, where I've had to, or simply wanted to in spite of my symptoms. I've even had weeks like that, but eventually it shows.

It would look like the second day, the ones with fatigue are increasingly doing less than the controls.

 

[Snow Leopard]

This paper should not be used to justify self-reporting of activity levels in such studies. If you are going to spend a lot doing a study, spend a bit more to do it properly by using activity monitors (and use them for a lot longer than a day).

Given that it was for a single day, I doubt it is generalisable. It's easy to report accurately for a day, but it might become tiresome after the 40th day.

I wonder also whether children are going to suffer from greater social-desirability biases (including greater diligence in activity reporting)?

 

[Dolphin]

I can’t imagine they would have thrown away loads of data. If they had used a cohort that solely satisfied Fukuda but didn’t satisfy other criteria, there would have been a lot of other patients (i.e. who satisfy Fukuda and other criteria) excluded. So I suspect these were all of those who satisfied the Fukuda criteria.

Also Leonard Jason likes to use “ME and CFS” language when he can.

 

[Hutan]

Sure, but why would an experienced ME/CFS researcher who understands the consequences of the various criteria use a potentially mixed cohort? Some of the Fukuda sample may not have PEM.

 

[Andy]

Also Leonard Jason likes to use “ME and CFS” language when he can.

Well, I for one would prefer he didn't.

 

[Dolphin]

Also Leonard Jason likes to use “ME and CFS” language when he can.

Well, I for one would prefer he didn't.

I tend to mainly use ME/CFS myself for the sorts of reasons given by @Michiel Tack in this post

 

[Amw66]

Given that it was for a single day, I doubt it is generalisable. It's easy to report accurately for a day, but it might become tiresome after the 40th day.

I wonder also whether children are going to suffer from greater social-desirability biases (including greater diligence in activity reporting)?

I know of some children ( not all ME) who told the authority figure what they thought they wanted to hear, either to make them go away ( psychology and teachers seen to score high in this , bit may be age dependent ) , or to please
In an asymmetric power balance it is not uncommon.