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

So this invalidates both the B&B assumption, which never had an inkling of evidence and was always just assumed to be true, and the deconditioning hypothesis, with findings that most ME patients are highly sedentary but not at all to the point of being deconditioned. There are, in fact, perfectly healthy people who are even less active than many of us are.

See also: cats. Who sleep 20h a day. Not deconditioned. It takes a lot to actually be deconditioned. And deconditioning does not fluctuate or progress within hours, it's not how any of this works.

Those were hypotheses presented as fact for 30 years and this is the first time someone actually puts them to the test. And it showed both were invalid. In effect invalidating all research based on those assumptions, including PACE.

Which I doubt will be the conclusion moving forward and yet this was always self-evident from patient testimony and reported activity pattern. Even in PACE they admitted that their participants were moderately active so it never stopped them from pretending otherwise.

Frankly, I'm all up for more research on this. With careful supervision and complete transparency, of course. Have them test their hypotheses. Go all the way, test them objectively and precisely. We all know what it will show. Not sure it will have an impact but no one else would do such useless research anyway.
 
Trish said:
And with only 3 or even 7 days of useful data from not much more than half the trial participants, they really wouldn't be expecting to find any boom and bust pattern anyway. That would require wearing the actometer consistently every day all the time for a month or more, I think.
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I think that is the difference in when patients talk about crashing, as a once in a while thing, and these researchers talking about 'boom-bust'

Remember GETSET Julie?

https://spoonseeker.com/2017/07/03/spotlight-on-getset-julie/

She just needed to reschedule her week, sleep less and do more, almost back to normal! (irony)

If you're convinced the 'bom-bust' is a day-to-day change in pattern, it should be evident also in 3-7 days data.

But it would not be enough to see the pattern in patients actual behaviour, if they just had listened to and taken into account how patients really describe their lifes.
 
inox said:
I think that is the difference in when patients talk about crashing, as a once in a while thing, and these researchers talking about 'boom-bust'

Remember GETSET Julie?

https://spoonseeker.com/2017/07/03/spotlight-on-getset-julie/

She just needed to reschedule her week, sleep less and do more, almost back to normal! (irony)

If you're convinced the 'bom-bust' is a day-to-day change in pattern, it should be evident also in 3-7 days data.

But it would not be enough to see the pattern in patients actual behaviour, if they just had listened to and taken into account how patients really describe their lifes.
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I saw a discussion on Twitter a while ago. Can't remember the exact details but someone (either a therapist or clinical psychologist) was talking about something like the mechanism of MUS and how to communicate that information to the patient in order to reassure them. Maybe I'm mistaken on the details but it was something like that, the point still stands.

That someone sort of said the quiet part loud: that it is not meant to be true, it is simply held to be "axiomatically true" for the purpose and only in the context of the therapy, not because it is true but because it is convincing and may be beneficial for the patient. It's the precise way in which they described the act of pretending something is "axiomatically true" whether it's true or not that bugged me.

And it really made it clear that much of those assumptions and conjectures that are presented as fact are not actually believed, they are merely said to be true because it is useful to do so, that it does not really matter whether it's true or not as long as it can nudge someone a tiny bit better. And the belief is that if it is untrue, than no harm done anyway (since you can't measure and no process exists to record it).

So I don't think they believe any of this. To them lying is just one more tool as long as it's convincing, that it does not matter what the expert is saying, as long as it is said with confidence by an expert that is all that you need for good therapy. In some cases anyway, where we do fit in.

It's basically throwing every bit and piece of placebo effect at the wall until something sticks. Even if they can't actually tell what works, they just assume that eventually something will and that is what a good therapist is all about. Then use basically random questionnaires that have no precision to cherry-pick what they want to see and call it evidence-based medicine.

Just imagining if all the money spent on this nonsense was allocated to research and the actual impact it would have makes me nauseous. Of all the consequences of the psychologisation of chronic illness, the opportunity cost of not funding research is absolutely monstrous.
 
rvallee said:
I saw a discussion on Twitter a while ago. Can't remember the exact details but someone (either a therapist or clinical psychologist) was talking about something like the mechanism of MUS and how to communicate that information to the patient in order to reassure them. Maybe I'm mistaken on the details but it was something like that, the point still stands.

That someone sort of said the quiet part loud: that it is not meant to be true, it is simply held to be "axiomatically true" for the purpose and only in the context of the therapy, not because it is true but because it is convincing and may be beneficial for the patient. It's the precise way in which they described the act of pretending something is "axiomatically true" whether it's true or not that bugged me.

And it really made it clear that much of those assumptions and conjectures that are presented as fact are not actually believed, they are merely said to be true because it is useful to do so, that it does not really matter whether it's true or not as long as it can nudge someone a tiny bit better. And the belief is that if it is untrue, than no harm done anyway (since you can't measure and no process exists to record it).

So I don't think they believe any of this. To them lying is just one more tool as long as it's convincing, that it does not matter what the expert is saying, as long as it is said with confidence by an expert that is all that you need for good therapy. In some cases anyway, where we do fit in.

It's basically throwing every bit and piece of placebo effect at the wall until something sticks. Even if they can't actually tell what works, they just assume that eventually something will and that is what a good therapist is all about. Then use basically random questionnaires that have no precision to cherry-pick what they want to see and call it evidence-based medicine.

Just imagining if all the money spent on this nonsense was allocated to research and the actual impact it would have makes me nauseous. Of all the consequences of the psychologisation of chronic illness, the opportunity cost of not funding research is absolutely monstrous.
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Oh, I agree, that's how I percive much of the MUS arguments/way of thinking/treating.

But - why then do a study to check if your assumptions are right...?

Either Crawley isn't very populare now in the MUS-community proving herself/MUS-theory wrong, or, they actually were so confident in their assumptions the thought of the study failing never occured.

I'm ruling out actual science and the need for knowledge, as then this is the type of study should have been one of the very first to conduct, before hypothesis-making, and suggesting treatments.
 
They just see it as a white lie for our benefit. Unlike the white lies and distractions I used when communicating with my parent who had severe dementia this is not compassionate in the interest of the other person. It is prioritising their own unhelpful beliefs over and above the lived experience of their patients.
 
rvallee said:
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.
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Hey Richard--can you tell me where in the trial meeting notes this is? I'm trying to write a post about the actometer issue. I see some of the references in the trial meeting notes but didn't see that point being made. The main issue raised as I saw was that the failure to demonstrate any changes in one of the Dutch studies indicated that it wasn't a good measure after all.
 
Andy said:
I will acknowledge that and amend my statement accordingly. :)

Boom and bust as a concept is just so insulting to our the intelligence of any patient that it's applied to, it's infuriating.
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Yes, it is hugely insulting to me as a person with low back pain! Actually the video is worse than I thought as it brings in deconditioning and also says that finding a baseline will allow you do all the usual activities of daily livingeven on a bad day. On bad days I cannot cook/eat/think/string a sentence together.
Her tone is v patronising...

They also use the boom and bust idea with depression....
 
dave30th said:
Hey Richard--can you tell me where in the trial meeting notes this is? I'm trying to write a post about the actometer issue. I see some of the references in the trial meeting notes but didn't see that point being made. The main issue raised as I saw was that the failure to demonstrate any changes in one of the Dutch studies indicated that it wasn't a good measure after all.
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Fortunately I had it handy! Oh, wait, that's the one you had in mind. But it does say the reasonably active part I remembered.

It's pretty remarkable that they completely contradict the very model they proposed for why GET is worth testing. They clearly know their model is BS and just the least worst plausible BS they could put forward since they expect nobody to be bothered by it.

I do like that they posit a possible explanation about a difference with pervasively passive patients, whatever that means, but then don't bother testing that hypothesis while in the midst of the largest trial of its kind, funded precisely to be the definitive test of this treatment model. They just leave that hanging, a critical difference right at the core of their model, and... whatever.

TMG_12_p3_actigraphy.png
It's been a while but did anyone notice if "later next year" actually happened? It's a bummer that the document isn't OCRed, makes going through it harder than it should.
 
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It's been a while but did anyone notice if "later next year" actually happened? It's a bummer that the document isn't OCRed, makes going through it harder than it should.[/QUOTE]

The issue does not seem to have come up in the rest of the minutes that I could see. Lucibee also mentioned that in her blog post on this issue, which I just looked at. So it seems they didn't get back to it, at least according to the documentation, and just let it drop.
 
dave30th said:
View attachment 7680
It's been a while but did anyone notice if "later next year" actually happened? It's a bummer that the document isn't OCRed, makes going through it harder than it should.

The issue does not seem to have come up in the rest of the minutes that I could see. Lucibee also mentioned that in her blog post on this issue, which I just looked at. So it seems they didn't get back to it, at least according to the documentation, and just let it drop.
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Ah, the good old "if we don't write it down, we can't be held accountable for it" tactic, a solid move in the "what if we we don't care about things we don't like?" strategy. I don't think that approach is covered in the scientific method. Or maybe it is, possibly in its unwritten parts. Sneaky sneaky.

I do think I vaguely remember 1-2 tweets by Sharpe and Wessely respectively on this, but I can't search since I'm blocked. It wasn't particularly clarifying but I think it mostly consisted of just that, that most participants are reasonably active anyway so it's not a big deal (even though level of activity was the endpoint, but what do I know? I'm not a regius professor of psychiatry at KCL).
 
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