COFFI - The international collaborative on fatigue following infection

Spotted this on Twitter yesterday. An unlisted YouTube video from Coffi.

The presentation:

Haven't watched it, but saw that Phil Parker is also appearing in it.

 

Was scrolling through the YouTube video and saw this image, suggesting PEM is like Pavlov conditioning with dogs:

 

Jason Busse also makes an appearance.

His question was: 'How do we in in in an effective and appropriate way engage people in this idea that they can try this approach which seems entirely counterintuitive to their experiences, to what they are hearing online, to all of the information in their environment?'

More about Busse here:
https://www.s4me.info/threads/patie...scription-study-2023-hasan-busse-et-al.29762/

and here:
https://www.s4me.info/threads/bmj-r...and-members-of-the-grade-working-group.19317/

 

I suspect the behaviour of the BPS advocates seeing psychological/psychogenic explanations everywhere is closer to simple Classical Conditioning than the PEM experience of people with ME or Long Covid. Have these people ever communicated with people experiencing PEM?

Do they have any understanding of Classical Conditioning? Pavlov’s dogs salivated immediately not twenty fours later, their salivation did not continue for days or weeks when no food appeared, salivation was a normal modality specific food related response and the bell failed to trigger other unrelated autonomic responses. Please go away and study psychology 101 and actually ask patients about their experience.

 

The Jake who asks a question near the end is Dr Jake Hollis who wrote the two confused Guardian letters recently.

 

Timestamp: he actually asks the question Jo asks —

"I understand this idea that our expectations, or our brain's expectations, can override signals from the body. And that typically a predication error would help update the brain to understand that actually, you know, that these danger signals aren't warranted. So why do you think that that does not happen with these conditions? Why is the prediction error not sufficient to kind of re-regulate, recreate homeostasis?"

Much waffling proceeds in an attempt to answer. "Better safe than sorry." "Better that the alarm signal goes off one time too much". "Hundreds of years ago that might have secured their survival." Yep, really. Then some drivel about the "perfect storm" of the Covid pandemic. I didn't feel the need to continue on to listen to PP's contribution.

 

Evolutionary adaptation is just something that happened to other people...

 

I sometimes wonder, is this crap still actual? As in, do people really still believe this is some form of conditioning? And not the simple fact that dogs are smart enough to learn associations and if you're enough of a jerk to make them learn that if you ring a bell and feed them, you can also yank their chain and ring the bell without feeding them. You know, like a jerk.

Because humans behave the same. We have all been at school, run by clocks deciding when it's lunch time. This is not some complex brainwashing, it's just learning, which even a snail can probably handle.

 

But they're not danger signals, so the entire concept is pointless. I don't know why they keep insisting so, other than that it's necessary for their ideology. But symptoms do not signal anything, they are something, and it's not danger, it's illness. I have never once felt 'threatened' in any way by symptoms, or been on the lookout for danger, or any of this weird nonsense. This is simply not how humans behave.

This is all so silly and completely unnatural framing of natural sensations. They just need to turn them unnatural because it's literally where their whole concept resides.

 

There seems to be a deep lack of common sense in psychological theorisation that pops up in all these ideas.

We are told that a pathological state is explained by some normal regulatory process - like Pavlovian conditioning or predictive coding. Yet these processes lead to normality. So there has to be a second half to the theory that says why normality does not apply.

In fact it is only the missing second half that would explain pathology.

It is exactly the same as the 'molecular mimicry' theory in immunology. If molecular mimicry is explained by normal immune mechanisms why does it only occur very occasionally - less than once in a lifetime on average?

 

I would like to see an on-the-spot demonstration of this idea that people can create their own symptoms with their minds. I'd like to see a proponent of this idea stand in front of me and make him/herself faint

 

"How do we con them into believing this bullshit in the least obvious way?"

 

Without hyperventilating. Just thinking. Since the mind is so all-powerful...

 

Yep and it is always underlined that with conditioning the immediacy is the most important thing (followed by strength which isn't nearly as important) otherwise.. it just doesn't work at all.