Esther Crawley (2019) Physical activity patterns among children and adolescents with mild-to-moderate CFS / ME [baseline accelerometer MAGENTA data]

Can't actually find this paper, but the abstract has been posted at Bath and I thought it might be of interest, even though they don't really say much:

https://researchportal.bath.ac.uk/e...tterns-among-children-and-adolescents-with-mi

 

Wow, that seems like they are desperate for data if that is their minimum requirement. Also means they can potentially miss the effect of any crash if they are selective of which three days (or more) that they use from the patients.

And what's the betting they will conclude that greater activity means better outcomes so GET, as always, is the answer, rather than being less ill means greater activity? Given it's Crawley and co I guess that's actually a certainty.

 

I think this is problematic because on crash days the daily routines break down and only the minimum necessary is done. That could well exclude not wearing actometers.

Although she doesn't seem to say anything about activity patterns, only levels.

Edit: what I'm trying to say here is that it sounds like participants were often not wearing the device and that is bad because the data isn't going to be missing at random, it will be missing for the bad days.

 

It all seems pretty meaningless until someone invents a time machine to enable participants to be fitted with the device before they become ill.

 

This.

It is so disappointing to see a title that should go with a really interesting paper and then see nothing of interest. Measuring how much activity tells us nothing useful except that some PWME are worse than others in terms of what they can do. Duh. What continuous actometry (and it needs to be every day all day) could tell us is what the abnormal activity pattern actually is. That might begin to tell us what abnormality of physiology we are looking for. This ought tone especially useful in children because children will be less likely to overlay the primary physiological deficit with deliberate pacing routines that might mask this.

 

It is also telling that the metric given for activity is the government recommendation. Rather than defining in physiological terms the problem is defined in terms of what children ought to be doing.

 

I wonder what an invalid weekday is.

 

From the MAGENTA protocol:

 

My Google skills aren't strong enough to find it, which I would guess probably means it's only accepted at the moment and is yet to be published. Perhaps they are saving it for ME Awareness Week??

 

Well, it does seem to say that some ME/CFS patients had normal activity levels. So ME/CFS is unlikely to be due to low activity levels.

 

And Esther Crawley is on the Editorial Board: https://bmjpaedsopen.bmj.com/pages/editorial-board/

 

A cogent point.

 

Why did the reviewers not send the paper back and insist on the full 7 days being analysed? Or will that appear in a different paper?

 

I have the feeling the accelerometer component of this study is Crawley trying to see if she can use actometers to support her claims of treatment efficacy. Either in this study, or future ones. She probably knows about the Dutch studies that obtained null results.

An accelerometer study by McCully did initially report improvement with an exercise program. Only when the data was re-analyzed did it become clear that patients began deteriorating after a while (credit to the authors for reporting this!). There are so many possible ways in how accelerometers are used, at which points in time, for how long, with what instructions to participants, how missing data is handled and so on that there could well be enough room for false positive results.

 

What a wasted opportunity. So much that could have been captured and analysed .

This seems a halfhearted attempt to publish something rather than setting out to find something meaningful.

No doubt there will be a follow up which will swallow more funding.
It is a potentially good subject in the hands of someone who knows what they are doing- from this abstract it seems to highlight that it is not this team.

How big was MAGENTA cohort re amount of data captured?

 

A reasonable person would notice that this is the kind of thing that should have been checked before promoting, literally for decades, physical activity as a "treatment" for this condition.

"These people need exercise because they don't do enough physical activities"
"Wait, what do we know about their physical activities?"
"Very little"
"..."

Of course that's what happens when the "cure" is the starting point, rather than the conclusion of careful research, but then that's something any amateur scientist understands and would avoid.

Wow, that is money well-spent by real, serious, world-class scientists. True leading lights of research, much professional and competent.

 

This was actually noted in the PACE trial meeting notes as the justification for why actography was not needed, that most participants were moderately active, sedentary rather than deconditioned.

There are perfectly healthy people who are less active than I am, I have no doubt about this. I make every effort to move throughout the day (slowly, but surely). The deconditioning hypothesis has been thoroughly debunked and they know this, hasn't stopped them from making a claim they know is blatantly false.

 

Yes it is strange, isn't it? The whole fear avoidance theory doesn't really work without the deconditioning part. But because this is an element of the theory that can actually be tested and debunked, they try to avoid talking about it directly. They just talk about how fear avoidance was an important mediator in the PACE-trial or how their questionnaires show that ME/CFS patients have more fear-avoidance beliefs than controls. IMO, that doesn't really matter if there is no proof of deconditioning.

It is hard to believe patients are sick because they have an irregular activity pattern (boom and bust) or because they misinterpret normal bodily sensations (catastrophizing). These elements of the theory only make sense if they lead to less activity and severe deconditioning. It's hard to think of a reason why graded exercise therapy would be able to reverse ME/CFS unless you believe the symptoms of this syndrome are caused by deconditioning.

So deconditioning is the whole basis of the BPS view, but they act as if it doesn't matter. As if results, like this one by Crawley, do not speak against their hypothesis.