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

The real :star: is @JohnTheJack for obtaining them in the first place.

 

Why isn't there a star emoji???

 

Well I guess the Sun is a star!

 

@Lucibee, @JohnTheJack, @Graham ... Everyone who contributes to the demise of the BPS fallacy is a star. We are on the way to a whole Galaxy.

 

More specifically it literally contradicts the very model used in PACE for the GET arm. They contradict their own words. Not someone else's words or general principles but the very hypothesis they presented and claimed to be testing. They say it plainly that it's BS, merely a convenient lie.

That's really something that should matter and the fact that it doesn't, even when it's pointed out, is ridiculous.

 

Pretty sure that's the one.

 

What a strange comment. "Truly objective outcomes don't exist. The key finding is DIFFERENCE between arms". Seems like a curve ball. Sentence 2 is in no way a corollary from sentence 1, completely unrelated in fact.

And as for "that is how the illness is defined" ... well only because it is the BPS crew that have defined it that way, largely it seems because it fits with the outcomes they prefer to use.

 

He's suggesting that the 'pacing' arm was an active control group that magically controlled all of the possible biases, despite lack of blinding. He also hypothesises that patients had a more positive view of 'pacing' compared to CBT or GET that would translate into greater bias. Of course we know that the underlying bias in the 'pacing' arm over the course of the trial was in fact the opposite of this hypothesis - patients were made more aware of the fact that they were not improving since their activity patterns, symptoms etc were recorded and did not show signs of improvement. Secondly, there are participation biases - patients who have negatively made up their mind about CBT or GET are in no way going to participate in a trial of these therapies.

 

Yes, I fully understand the principle of control arms and measuring differences, so that common mode effects get cancelled out. And that the PACE notion of control was flawed, to the point they stopped calling it a controlled trial. I was really just observing that MS seemed to be suggesting that because they were measuring differences, then it was all OK, no matter what they were actually measuring. It's the Crap In, Crap Out principle, but they never seem to realise it.

 

My comment on this paper has no been published as a rapid response on the website: https://bmjpaedsopen.bmj.com/content/3/1/e000425.responses

 

Social media summary:

The first results of the MAGENTA trial have been published; the trail that aims to test graded exercise therapy and activity management in children with ME/CFS. The results are baseline data about the physical activity pattern of participants.

I’ve submitted a rapid response with two questions.

1) The authors wrote that no ‘boom-bust’ activity pattern emerged from the data. Yet in the protocol, treatments explicitly state they aim to change the boom-bust pattern of participants. Does that mean patients were instructed to correct illness behavior they did not display?

2) The data also showed that 9,4% of participants met government recommended levels for physical activity. Approximately half the healthy population does not meet this target. One of the interventions in the MAGENTA trial aims for a gradual increase in physical activity. Does this mean that the 9,4% were instructed to push their physical activity to even higher levels?

I’m interested in reading the authors’ answer to these questions. I hope they will respond.

 

Thanks for all your work Michiel.

 

Nice .

 

The whole "boom-bust" thing intrigues me... so I tried to track it back through the papers (as I guess you did too, Michiel), that Solomon-Moore et al cited. And promptly fell down another rabbit hole...

Stulemeijer et al.'s study of "passive" and "active" patients seems very light on detail about how their passive and active patients were defined. The refer to Prins et al.'s 2001 Lancet study, but Prins used three different categories: generally passive (90% or more beneath the reference score), moderately active, and generally active (90% or more above the reference score). They cite van de Werf's actigraphy study. This provides a bit more clarification: "pervasively passive patients had to be less active compared to other CFS patients for at least 90% of the total observation period. Subsequently, pervasively passive patients were defined as those subjects whose average daily physical activity scores stayed below the reference score in at least 11 of the 12 assessment days." Presumably the reference score in Stulemeijer and Prins is the same one determined by van de Werf?

Stulemeijer also state: "Adolescents with a relatively active physical activity pattern alternate between periods of activity and periods of rest." citing Bliejenberg's chapter on CBT in Jason's "Handbook on CFS". This book contains pretty much the same statement, but cites FITNET as the reference.

Why do they have to make it all so opaque? All this information comes from the same research group. They could just provide a single reference for these data.

eta: Another quote from van der Werf: "Compared to healthy controls, no indication was found that the CFS patients as a group were characterised by a high number of large day-to-day fluctuations in activity. However, this finding does not exclude that there are individuals who have such a pattern."

eta2: I'm aware I'm merely repeating what Michiel has already said - I'm just trying to make sense of it all in my own little way!

 

They go into the active versus passive group in this publication: Bazelmans E, Prins J, Bleijenberg G. Cognitive Behavior Therapy for Relatively Active and for Passive Chronic Fatigue Syndrome Patients. Cogn Behav Pract. 2006;13(2):157-166.

I think it is so opaque because it doesn't make sense. The questions I've asked could have applied to the group of Bleijenberg and Knoop as well, so many years back. The objective actigraphy data they collected (van der Werf et al. 2000) also showed little indication of a boom-bust pattern and a substantial proportion of participants had normal levels of physical activity. That strongly speaks against their cognitive-behavioral theory of CFS.

 

Whenever did objective evidence get in the way of a well reinforced poorly defined construct....particularly one with an asymmetric power balance and a sprinkling of messiah complex

 

Esther Crawley
https://www.s4me.info/threads/esther-crawley-what-drives-her-plus-quotes.1139/

eta: this quote was from a while ago.........maybe now she'd just look at her leg and say 'stop'(?)

 

Ye you took them through a car crash too!!