Patterns of daytime physical activity in patients with chronic fatigue syndrome, 2020, Chalder, Sharpe, White et al

[Andy]

Not sure if this deserves it's own thread or should be folded into the PACE thread as it's based on PACE trial data.

Objectives
To classify patients with chronic fatigue syndrome (CFS) by pattern of physical activity and determine the clinical associations of each type.

Methods
579 out of 641 participants with CFS from the PACE (Pacing, graded Activity, Cognitive behavioural therapy: a randomised Evaluation) trial wore an Actiwatch (accelerometer) for between 3 and 7 days before any trial treatments, which provided a measure of physical activity. Participants' activity was categorised into one of four patterns (pervasively inactive, pervasively active, boom and bust, or indeterminate) using a priori definitions of activity. Clinical associations were sought with each group using an exploratory binomial regression with the indeterminate activity group being the reference group.

Results
124 (21%) of the participants were classified as pervasively inactive, 65 (11%) as pervasively active, 172 (30%) showed a ‘boom and bust’ pattern of activity, and 218 (38%) had an indeterminate pattern. Pervasively inactive patients were more physically disabled, those in the pervasively active group were more anxious, and those in the boom and bust group had more sleep disturbance.

Conclusion
We were able to classify patients with CFS into groups by their daytime activity pattern. The different patterns of activity were associated with important clinical variables, suggesting that they might be helpful in determining prognosis and targeting treatments. These associations need replication.

Paywall, https://www.sciencedirect.com/science/article/abs/pii/S0022399919310323
Sci hub, https://sci-hub.tw/10.1016/j.jpsychores.2020.110154

 

[MSEsperanza]

So the biggest group (38%) showed an "indeterminate pattern".

Couldn't they have done something useful with accelerometer data, e.g. if they had let particpants wear the devices at some time points during and after treatment?

Or if they at least had included PEM as a hypothesis in their analysis instead of "boom-bust"?

 

[MEMarge]

Something to flick thro later and make me angry.

This type of trash increase my energy to fight against the BPSers.

"We used the mean of the entire sample to define the reference value and regarded any daily activity score falling below this as relatively inactive. We defined a participant as being pervasively inactive if their daily mean activity score fell below the reference value on every day, since Journal Pre-proof Journal Pre-proof we only recorded actigraphy for up to 7 days, rather than the 12 days of the previous study"

"Pervasively Active (PA): Participants were defined as being pervasively active if their mean daily activity level was above the mean reference value on every day"

Then for BOOM and BUST:
"1. Lowest activity levels on the first complete day – The participant had come to the hospital to have their Actiwatch fitted on the previous day making this a high activity day. A participant showing a boom and bust pattern of activity might follow this by a day of low activity, making the first completed day of actigraphy data particularly low.

2. Range larger than average – Because these participants were likely to exhibit more extreme activity levels, the range between their highest and lowest days of activity were likely to be higher than average.

3. Most active day followed by least active day – This assumed that if a BB participant had a day of high activity, the following day the participant would be inactive as they had exhausted their energy.

4. Most active day followed by day of <50% that activity – This simply assumes that following a day of highest activity, a BB participant’s activity levels would drop dramatically."

They are trying to psychologise any activity levels it seems!

 

[Trish]

Couldn't they have done something useful with accelerometer data, e.g. if they had let particpants wear the devices at some time points during and after treatment?

They were supposed to wear them again at the end of the trial, but the researchers made up nonsensical reasons not to do this (too much of a burden for patients). It seems pretty clear they changed their minds when they saw from other trials that step counts didn't improve.

 

[Hoopoe]

They measure steps per day for "up to 7 days" and talk about activity patterns. This is far too short.

 

[Tom Kindlon]

There is no control group.

Here are some research studies that found no difference in variations in activity patterns when a control group was used:
"The heterogeneity in the physical activity pattern between subjects within the CFS and control group did not differ." https://pubmed.ncbi.nlm.nih.gov/21843746/

"There is no difference in variation of physical activity levels between patients with chronic fatigue syndrome and healthy control subjects" https://pubmed.ncbi.nlm.nih.gov/20943713/

"No between-group differences were found in the pattern or amount of sleep, activity, or cortisol secretion."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3079947/

"the present study was not able to confirm the hypothesis of a more fluctuating activity pattern in patients with CFS, nor during the day, nor during the registration period." https://www.sciencedirect.com/science/article/abs/pii/S0003999311004175

"there were no significant group, gender or interaction effects for the number of absolute large or relatively large day-to-day fluctuations (Table 2 and Table 3)." https://pubmed.ncbi.nlm.nih.gov/11164063/

 

[rvallee]

Selective reporting of data is not an acceptable practice. The plan was to measure activity at the beginning and end of the trial, not do some BS analysis trying to cherry-pick random correlations from only one initial measure. This is infantile in its incompetence. Mythbusters were more rigorous in their experiments.

So why is it accepted here? Why the exemptions that allow BPS research to violate all rules and norms? Why do the editors play favorites with this ideology?

All of this on the backside of having invented the most BS excuse possible, that it was too much of a burden. Clearly not. I guess that excuse really needs to be revisited since it is such BS that they actually completed an initial record. On top of the absurdity of claiming wearing a small device is too much of a burden in an experiment that aims to get people to do as much physical activity as they possibly can. This is Soviet-level of political BS and the fact that it is defended, actually defended, in medical research is absolutely bonkers.

The different patterns of activity were associated with important clinical variables

But they literally weren't. This is complete BS, wishful thinking.

As the aetiology and pathophysiology of the condition are not yet understood

Coming from the people who have been selling for decades their belief system in which they "explain" the aetiology. Literally most of their "treatments" consists of "explaining" the aetiology. Which they admit here is BS. How is that acceptable??!

Researchers and clinicians have used the term ‘boom and bust’ to describe this pattern and, whilst it has been observed clinically, it has not been empirically validated.

Chalder has been selling that particular BS for years. She constantly refers to it as being validated and here, again, they admit it's completely made up. How are these people allowed to spew complete BS unopposed, even elevated by the very gatekeepers of science who simply choose not to do their job for inexplicable reasons?

We hypothesised that a significant minority of patients would be pervasively inactive, and a smaller minority would be pervasively active, this being a replication of van der Werf and colleagues’ study

Based on the experiment's entry criterion of an SF-36 below 65 this is literally contradictory. It's like an experiment of very tall people where some are hypothesized to actually be short. Makes zero sense.

The "patterns of activity" are completely arbitrary, they just hacked square pegs so a few of them would fit in round holes. The definition of "boom and bust" is just laughable. Whoever approves and publishes this is an embarrassment to science..

 

[Snowdrop]

Is this the final paper to be expected from this trial (i have a dim memory of FoI requests being denied because further papers were still to be written on the trial)?

Was this paper expected or have the authors decided to publish all out of the blue?

 

[Snow Leopard]

Or if they at least had included PEM as a hypothesis in their analysis instead of "boom-bust"?

They think PEM is Boom-bust!

Also note the boom-bust categorisation was post-hoc.

 

[Dolphin]

Is this the final paper to be expected from this trial (i have a dim memory of FoI requests being denied because further papers were still to be written on the trial)?

Was this paper expected or have the authors decided to publish all out of the blue?

One thing they mentioned they planned doing was a predictors paper where they looked at how baseline factors influenced outcomes. This doesn’t do that. So it's unclear whether that paper will ever come out and if it doesn’t, whether that was because the results didn’t suit them (we have no idea whether they do or not; they still consider CBT and GET worked based mainly on subjective measures at 6 and 12 months).

 

[MSEsperanza]

Whoever approves and publishes this is an embarrassment to science..

Two of the authors (Sharpe & White) are on the journal's editorial board:

https://www.sciencedirect.com/journal/journal-of-psychosomatic-research/about/editorial-board

 

[Cheshire]

Sharpe et al. are pervasively unsurprising...

 

[dave30th]

They think PEM is Boom-bust!

Also note the boom-bust categorisation was post-hoc.

Exactly right. They interpret the payback people experience after activity in psychological terms that fit their hypothesis.

 

[Barry]

It has also been suggested that patients with CFS have exercise intolerance rather than reduced fitness.

Furthermore, the effect of therapies such as graded exercise therapy (GET) is probably mediated by improved exercise tolerance rather than by improved fitness [20, 21].

GET aims to stabilise and then gradually increase the level of the patient’s physical activity[20-22], by reducing deconditioning, exercise intolerance and fear avoidance beliefs[20, 21].

Yes it is well understood that pwME's physiology responds abnormally to exercise. And yet even as these folk now feel they need to embrace the notion of exercise intolerance, is it just me, or does the above phraseology make it almost sound like mere laziness, rather than a physical intolerance?

And this very post hoc claim that GET aims to reduce exercise intolerance ... who is kidding who here? It never aimed to do anything of the sort before, so why suddenly invent a new claim retrospectively for it? Surely not some desperate attempt to legitimise the illegitimate?

 

[Saz94]

I thought Sharpe had retired from me research...

 

[Ravn]

And this very post hoc claim that GET aims to reduce exercise intolerance ... who is kidding who here? It never aimed to do anything of the sort before, so why suddenly invent a new claim retrospectively for it? Surely not some desperate attempt to legitimise the illegitimate?

There've been some who have likened our exercise intolerance to the sort of allergy that you treat with desensitisation therapy - so GET would be a sort of desensitisation therapy for us. Once again I can't remember who said that - can somebody please give me my memory back! - but likely it was someone who subscribes to the central sensitisation idea.
Just another case of it doesn't matter what the problem is, the answer's always GET.

 

[Obermann]

Doesn't this undermine the cognitive behavioural model for ME/CFS? The model proposes that inactivity is part of the problem, and the PACE authors have also sometimes claimed that "boom and bust" is part of the problem. If many different kinds of activity patterns can be identified in the patient group, it seems implausible that the illness can be reversed by adhering to a specific activity pattern.

 

[EzzieD]

There've been some who have likened our exercise intolerance to the sort of allergy that you treat with desensitisation therapy - so GET would be a sort of desensitisation therapy for us. Once again I can't remember who said that - can somebody please give me my memory back! - but likely it was someone who subscribes to the central sensitisation idea.
Just another case of it doesn't matter what the problem is, the answer's always GET.

It was the Mayo Clinic https://www.mayoclinic.org/diseases...gue-syndrome/diagnosis-treatment/drc-20360510

Graded exercise. A physical therapist can help determine what exercises are best for you. Inactive people often begin with range-of-motion and stretching exercises for just a few minutes a day. Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen.

That whole page is just dreadful.

 

[Barry]

It was the Mayo Clinic https://www.mayoclinic.org/diseases...gue-syndrome/diagnosis-treatment/drc-20360510

Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person's hypersensitivity to a particular allergen.

[my bold]

Don't these truth-weavers love their use of the word 'may'. Like, a miracle may happen tomorrow. Seems to be a much-favoured get-out-jail-free word for them. (Basically covering themselves in that they may be talking a lot of bullocks, but did not make a definitive statement on it!).

 

[EzzieD]

[my bold]

Don't these truth-weavers love their use of the word 'may'. Like, a miracle may happen tomorrow. Seems to be a much-favoured get-out-jail-free word for them. (Basically covering themselves in that they may be talking a lot of bullocks, but did not make a definitive statement on it!).

Yes, BPS folks really LOVE 'may', and also 'suggests', 'it is assumed', 'it is thought', and other words/phrases along those lines, to make the results suit their own biases/personal beliefs. Science and, y'know, actual evidence, are unnecessary!