COFFI - The international collaborative on fatigue following infection

[Utsikt]

Post Exertional Malaise - Silje Reme

Seems like they’ve had a seminar: The Coffi Consumer-researcher Online Seminar III

She get’s PEM kind of right, but claims it’s also present in FM and post-cancer so it doesn’t seem like she understands it properly.


She claims that we experience the «symptoms» we predict we will experience. It doesn’t seem like she’s even understood that in the false hand experiment the participants don’t experience pain when the false hand is stabbed - even though they expect to feel it because they think their hand is being stabbed. Which is effectively disproves her hypothesis.



There’s the usual babble that is presented as «new» or a «paradigm shift» like she said in a recent news article:


The last slide proposes a way to test her hypothesis. We’ve already done that in tens if not hundreds of trials. They have all failed to demonstrate any benefit. So the hypothesis is probably wrong.

But if Reme is anything like Flottorp, she has probably not heard of the null results…

 

[dave30th]

Trial By Error: Why is Professor Crawley Still on the COFFI Steering Committee? | Virology Blog

By David Tuller, DrPH Several years ago, the leaders of the biopsychosocial ideological brigades decided to create the Collaborative On Fatigue and related ...

virology.ws

 

[rvallee]

that the narrative of a broken battery and the need to manage energy is ungrounded and may be very unhelpful. We don't have any good reason to think it is a valid model

It was always just an analogy, not a model.

 

[Jonathan Edwards]

It was always just an analogy, not a model.

A lot of therapists and even the UK NICE Guideline have it as a model or an approved approach to treatment. It is deeply embedded in the BACME approach. No way do they see it as analogy!

 

[rvallee]

She claims that we experience the «symptoms» we predict we will experience. It doesn’t seem like she’s even understood that in the false hand experiment the participants don’t experience pain when the false hand is stabbed - even though they expect to feel it because they think their hand is being stabbed. Which is effectively disproves her hypothesis.

Everything I see here is baseless speculation about what we think and things we don't even do or say. Same as the old Wessely approach where they invent imaginary reasons and don't bother beyond that. The idea that we have expectations that doing things will kick our asses is completely detached from reality, they have no idea how any of us experience any of this.

 

[rvallee]

A lot of therapists and even the UK NICE Guideline have it as a model or an approved approach to treatment. It is deeply embedded in the BACME approach. No way do they see it as analogy!

Oh for sure, but almost all of us only ever said it as an analogy, though sometimes people lack the words to make that clear. Same with feeling 'poisoned', which is inaccurate but is simply used to convey the sickly feeling we have. None of us think we have arsenic, or whatever, coursing through our veins. They simply take what we say and reframe them to fit their model.