COFFI - The international collaborative on fatigue following infection

NelliePledge said:
Apologies for being flippant but Ive only just registered their logo. Coffee cup :whistle: :wtf: I thought they were supposed to be scared of coffee cups or are they doing group aversion therapy.
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Asking someone out for a cup of coffee is the strategy of two BPS supporters in Norway when they are criticised, and at least one of them is known to pester people with requests until they remove their criticism.
 
Spotted this on Twitter yesterday. An unlisted YouTube video from Coffi.

The presentation:
“Post-exertional malaise and setbacks in chronic fatigue conditions: Cutting-edge neuroscience approach” COFFI Consumer dialogues People with chronic fatigue conditions can experience recurrence of symptoms, often precipitated by physical, emotional or cognitive exertion.

Termed post-exertional malaise (PEM), this can pose a big challenge to full recovery. This seminar explores explanations and management approaches for post-exertional malaise and setbacks in chronic fatigue conditions in a dialogue between research scientists, clinicians and consumers. COFFI is a global research collaborative dedicated to research to help explain, treat and manage fatigue and persistent somatic symptoms following infection.

The COFFI Consumer Advisory Group advise on COFFI’s research portfolio, and promote constructive public narrative around helping patients, researchers and practitioners work together for managing and recovering from these conditions.

Professor Silje Reme is a clinical pain psychologist at Oslo University Hospital. Dr. Becca Kennedy. She used an evidence-based neuroscience approach to chronic conditions while working at Kaiser Permanente.

Rachel Whitfield developed long covid during the pandemic and has now fully recovered. She has since told her story multiple times to the BBC and ITV as well as a variety of podcasts.

Fiona Symington lived with M.E/CFS for 14 years, and chronic pain for 25 years before recovering completely using mind-body medicine five years ago.
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Haven't watched it, but saw that Phil Parker is also appearing in it.


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Ugh, I can't bear to watch it.

COFFI seem to be relying heavily on a very small number of people who recovered from Long Covid or ME as their patient advisory group, and they are leading COFFI by the nose into LP la la land. And of course COFFI are willingly following.

Funny, not funny, how eager COFFI are to listen to a very small group of 'recovered patients' and to deny the testimony of thousands harmed by GET, directive CBT and LP.

Rachel Whitfield developed long covid during the pandemic and has now fully recovered. She has since told her story multiple times to the BBC and ITV as well as a variety of podcasts.
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As has Paul Garner, their PAG leader.

Sadly the media love a recovery story, however harmful to others and unscientific the claims made are.
 
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.
 
InitialConditions said:
The Jake who asks a question near the end is Dr Jake Hollis who wrote the two confused Guardian letters recently.
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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.
 
ME/CFS Skeptic said:
Was scrolling through the YouTube video and saw this image, suggesting PEM is like Pavlov conditioning with dogs:

View attachment 24332
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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.
 
Jo said:
And that typically a predication error would help update the brain to understand that actually, you know, that these danger signals aren't warranted
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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?
 
Jonathan Edwards said:
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.
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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 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?'
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"How do we con them into believing this bullshit in the least obvious way?"
 
Peter Trewhitt said:
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.
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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.
 
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