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

Paul Garner has just made a closed post of this paper.
https://twitter.com/user/status/1840037361821863991

 

@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 ...?

 

Bookmarked.

 

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?

 

But PEM is from exertion. I'm assuming you mean immediate PEM-type symptoms?

 

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.

 

I have a terrible reaction to fragrances, it's immediate, in fact I get reactions even before I smell it.

 

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'.

 

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?