Opinion Post-exertional malaise – A functional brain aberration?, 2024, Wyller

@SNT Gatchaman had in the lying flat thread (page 3) a way better suggestion for a real functional function of the need to lie flat: to protect the brain.
PEM as brain protection? That's a very functional way of thinking. Functional as used by normal people, not an aberration at all.

Maybe Garner and Wyller need a very long time of lying flat to be able to understand this idea. Accepting it will take them ...?
 
SNT Gatchaman said:
However, if PEM is a consequence of too dominant a priori-expectations,
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A wild speculation by someone who haven't got a foggiest idea what PEM is. If he asked MECFS patients in early stage why they describe PEM as happening "with no rhyme or reason", he wouldn't have made this kind of speculation. That is not an unusual description of PEM when the patient doesn't have experience with PEM or pacing. Or ask someone with lots of experience like me who keeps pushing the envelope and still can't predict accurately when PEM will or will not happen.
 
I know that this is unsubstantiated but I find this a very concerning move by the BPS advocates. At the moment PEM is what protects patients from being subjected to GET.

If they get their claws onto PEM in this way and start citing each other there is a real risk of the current progress being undermined or even reversed. A.very scary prospect and a reminder how tenuous our gains are.
 
People get PEM from environmental exposures, right? Like fragrances? I wonder if they could do a blinded controlled trial where a person is exposed to a chemical they know gives them PEM, or a placebo, but in a form where the person couldn't detect which. Maybe ingested in a capsule. (Would have to make sure it doesn't cause detectable side effects dissimilar from placebo.)

If a person reliably gets PEM from only the active chemical, without even knowing whether they were exposed or not, that'd falsify this "consequence of too dominant a priori-expectations" idea, right?
 
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Mij said:
But PEM is from exertion. I'm assuming you mean immediate PEM-type symptoms?
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I don't know. I thought the reaction to fragrances in some people is delayed like regular PEM, but I could be wrong. I haven't read very many anecdotes about it. Maybe it is a form of exertion, like the body uses energy to process and eliminate the chemical.

I was trying to think of some form of the above blinded PEM test with regular exertion, but I can't think of a way to make someone use their brain or muscles without them knowing.
 
Even if PEM were in a sense “made up by the brain”. It would **not** be advised to push through it.

If these doctors ever listened to patient experiences. They’d realise PEM and the threshold for triggering tends to get lower the more you trigger it.

Now if PEM was made up by the brain, you still wouldn’t want the problem to get worse. There’s a limit to what you can force your body to push through and if that limit gets smaller the more you create PEM. No matter if PEM have a functional nature. It would be foolish to exacerbate the problem.
 
This isn't specific to this article thread but I've thought of it having seen that word 'insight' again.

And I think it's a point that needs to be threaded through when trying to articulate issues going on to cause what we are all trapped in.

To good scientists, such as eg Oliver Sacks is one who does it well in his books etc, patient insight is a very important source of information from which to understand what might be going on and unpick a condition and its mechanism.


To bad/certain areas of pscyh too many have a belief that all patients have no insight is the issue. No insight at all. That is almost the one fundamental, universal 'given' of all who they 'treat'.

To the extent that should a patient, rationally and sensibly try and describe their symptoms to a medical person - just as anyone who broke their ankle who had a new cough that came at certain times would - they assume it is to be dismissed other than to write about as if it is a delusion. A 'symptom' only in the sense of 'patients present with stories about'. Whilst they get on with the business of ... well goodness knows what some of them think they are doing.


That mindset and skillset I'm not sure even has a place for mental health anymore. The people who take someone's story and tweak it to turn it into a 'fascinating mystery' for a book to encourage laypersons to wonder on 'the mind'. It's as medieval to me as the old astrology stories and fiction films where you had circus acts or sooth sayers.

But noone wants to call them out. Or this 'belief system' out.

I mean this is just a misogynist rant, this paper. It's about labelling mad and pushing new terms for it.

Desperately trying to use the pseudo-term 'brain abberation' instead of 'delusion'. Why is noone calling that out for being clear as day!?

I didn't realise how badly diseased with this misognyny the health system is until I watch all of this and people panting queuing up for their turn at the gravy train removing others' basic rights, and yes it is certainly just as many women happily doing it and men are getting impacted too.


Anyway, this point about insight is really important because the healthcare system seems to be forced to move forward currently to start having to genuinely (although I see begrudging) include patient voice.

And yet all I am seeing for ME/CFS is campaigns and initiatives that keep silencing us from accessing that right. UNless controlled by them 'who' and 'how' to limited circumstnaces eg PROMS and the BACME 3 pet patients etc.

ANd of course they would - because they don't want us to experience that change either.


Even those with conditions that are entirely mental health will have this right and input, yet because of this delusion from too many in the health service (it isn't us, and I'm often astounded when I sit there sane looking at some people tie themselves in knots with their delusions they've been fed by layering one false belief on top of the other - then trying to work out how it was us that must be the reason for that confusion or that idea - not plain old misogyny) I see this panting rallying-round to find a way to silence us again.

I think it is because there is a huge amount of budget and resource going to these people in total, who are twiddling their thumbs in cushy numbers. And the type of people they tend to be. How they sell their needing to be in those fake roles. 'you don't want to have to deal with them if they were allowed into any service for any rights or reason'. But noone is saying there isn't actually anything particular about us, just these BS rumours spread at such a rate we get avalanched

It really is not OK. And needs some sort of law or protection. This isn't 'research' or 'science'.
 
bobbler said:
o wow they are determined to get their money's worth out of that same old material

This is basically just trying to say PEM is a false belief

maybe with adding in that real nonsense theory about 'the expectation effect'.

Of course I think that the perfect paper that debunks the suggestions of the expectation effect is actually that same old one that has Knoop as part of it, Heins et al (2013):
The process of cognitive behaviour therapy for chronic fatigue syndrome: Which changes in perpetuating cognitions and behaviour are related to a reduction in fatigue? - ScienceDirect
Thread here: The process of CBT for CFS: Which changes in perpetuating cognitions and behaviour are related to a reduction in fatigue?, 2013, Knoop et al. | Science for ME (s4me.info)

The thread initially focuses on the part of the paper where there are graphs showing the objective activity and perceived activity.

Basically the various pseudophil ramblings in this try and put some spiel around people think that CBT 'made them less fatigue' based on it making them think they'd done more, when they hadn't. So they were surprised they weren't as tired - but only because they'd metaphorically actually only walked 1 mile and not 2, and thought this CBT must have therefore solved some specific type of fatigue 'response' to the 2miles.

But the graphs (and it gets a bit more complicated than this, as they have 'fast responders and slow responders' to the CBT separated out) show that everyone ended up at the same place with objective activity. No amount of thinking your way around it over the 4 time periods. Which are in essence measuring the 'ME/CFS' impact of this ie the fact you can't just 'increase' activity and still feel OK. Putting aside the PEM in between that may or may not have happened.

I'll underline that's them conning the medical profession, funders and patients into pretending they've fixed something when they instead brainwashed people into losing their calibration of what they'd done, to their advantage.

I can't help but emphasise that this same 'school' ie biopsychosocial then moved to decide to remove reporting any of the objective measures anymore. Papers since came up with every weak excuse under the sun as to why they chose poor subjective measures in unblinded trials (when that would be one of the only ways to make it near triangulated to be accurate), but really this shows that it is because there is no objective effect.

I can only assume because they found they could use this 'CBT tool' to programme in discrepancies in what people subjectively report (because they've been misled into thinking they've done more) instead, because they've brainwashed them or used social pressure/bias so that is higher than reality/objective measures.

It's basically fraudulent isn't it? except they get away with it because they are using the patient sample as the 'vessel' through which to insert this lie into their research - and you can't blame the patients for the fraud because they've been brainwashed/coerced/conned.

I also note that the patients targeted and situations created have always begun with those most vulnerable, and indeed the biggest power differential - hence the coercion being solidly involved. It hardly ever escapes me that the two areas of ME, where people have been actively campaigned against to be maligned, and soldiers who once enlisted are under more control than other citizens must be two of the most obviously vulnerable groups, and noone is picking up on it being sus/weird and that those who are attracted to such groups need to be viewed with extra oversight given other historical things we now look back and on and realise 'how did we not see that the wrong types would be attracted to places where vulnerable x, y, z are'. It is a potential huge ethical scandal to me so I'm always shocked outsiders don't pick up on this.


I knew that post-guideline certain individuals would try and attack the concept of PEM. And this new article is just the same blather with an 'insert a different word' really. I can't believe they'll use this and try and pretend it isn't just fancy words for 'hysterical woman/drama queen/hypochondriac' ie their attitude problem disguised, a sociology paper in them expounding what is behind the bigotry/mis-thinking rather than some sort of medical or scientific observation. Pure propaganda by literally hooking tropes together in sequence and one big claim, but it is all non-sequitur?
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1) I thought that GWS does not show 2nd day worsening on 2 day CPET so any exertion intolerance in GWS should not ab initio be equated to PEM among 2 day CPET worseners.
2) Don't the measures on 2 day CPET show peripheral problems which are being correctly perceived as fatigue? I suppose that does not "exclude "overperception" and an initial "overperception" of fatigue could then drive a peripheral shut down which would then be correctly perceived as fatigue, but is any of that any more than theory?
 
Are the quotes posted in the first page the whole story or is the commentary even worse? (I don't have access)

Eleanor said:
It's extremely Dunning-Kruger.
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I presume you mean in the ironic way since the Dunning Kruger effect is a statistical artefact, as an example of experts overestimating their flawed knowledge. (the same graphs can be produced from random noise due to self-correlation combined with floor and ceiling effects)
 
Snow Leopard said:
I presume you mean in the ironic way since the Dunning Kruger effect is a statistical artefact, as an example of experts overestimating their flawed knowledge. (the same graphs can be produced from random noise due to self-correlation combined with floor and ceiling effects)
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I actually have thoughts on this whole subject which I would love to put into a few coherent paragraphs, but my brain is not co-operating :rofl: so I'll just say "yeah."
 
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