Oslo Chronic Fatigue Network

The past few weeks following the Stockholm region's meeting regarding care for ME patients have been turbulent.

I have had significant difficulties obtaining documents related to the meeting. The region claims, for example, that no minutes were taken.
Link to blog:
https://mitteremitage-wordpress-com...l=auto&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

I have also tried to learn more about the collaboration with the health center where Lindsäter works. I have attempted to obtain a contract and decision regarding the additional assignment they claim to have. However, it turns out that there is no contract.
Link to blog:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

After being passed around the region for several weeks, I was suddenly contacted by the manager of the health center again. She informs me that they have declined the assignment.
Link to blog:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
 
So the BPS lobby preemptively claimed that they had gotten a formal assignment with regards to ME/CFS, but all they had was a proposal from themselves? And they ended up pulling out of it on their own?

I’m not up to speed on the roles, so I might have gotten things wrong?
 
 
MittEremltage said:
I have tried to summarize what has happened in Sweden since the consortium's secret meeting took place in Oslo 2022.

Google translated blog post:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
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You are doing a brilliant job of documenting all this, @MittEremltage.

Perhaps I should stop being shocked by the unscientific and harmful actions of this group. It is after all just a continuation of 35 years gaslighting sick people. It's very distressing to hear it's still going on, and affecting people in Sweden and elsewhere.
 
Trish said:
I should stop being shocked
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Thank you @Trish (and @Peter Trewhitt )! I feel the same way, that I shouldn't be shocked, but I still am. And above all, I am so frustrated that there is no public discussion about this beyond what I write and publish. The media acts as megaphones without any fact-checking. Consortium members are doing things in the name of Karolinska Institute, Stockholm University, and Region Stockholm, and people believe it.

I am doing what I can to document what is happening, thinking that at least there will be a record for when people wake up and try to understand what has happened."
 
Eight members of this group met with the Norwegian Directorate of Health to talk about ME in february, as found out by and FOI request by a Norwegian patient advocate, more can be read here (in Norwegian).

I'm just translating what Sissel shared as the main points of their presentation, I haven't been up to reading through it myself yet:
  • The Guidelines should not create artificial separation between patient groups without scientific backing (for example PEM vs non-PEM)
  • CBT and GET are well documented, safe and effective for this patient group and this should be made clear in the guidelines
  • A singular biomedical focus can be dangerous
 
OPINION:

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I have yet to read a single study from the Oslo Chronic Fatigue Consortium without finding something that seems off, writes board member of the Norwegian Covid Association Marit Stafseth (pictured).

(Foto: Jarle / Aasland Stavanger Aftenblad)

To the Oslo Chronic Fatigue Consortium:
Enough is enough
DEBATE: I question what the actual purpose of this research is.

Marit Stafseth BOARD MEMBER OF THE NORWEGIAN COVID ASSOCIATION
https://www.sciencenorway.no/covid1...c-fatigue-consortium-enough-is-enough/2503517
 
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https://www.sciencenorway.no/covid1...is-neither-psychological-nor-physical/2503062

OPINION:

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Responding to criticism: Modern brain research provides new insights into long-term symptoms and explains how symptoms can arise both with and without signals from the body, writes Silje Endresen Reme (pictured)

(Photo: Universtity of Oslo)
Long Covid is neither psychological nor physical
OPINION: We don’t believe there is one single way out of Long Covid – we believe there are several.
Silje Endresen Reme
PROFESSOR AT THE UNIVERSITY OF OSLO AND CHAIR OF THE BOARD, OSLO CHRONIC FATIGUE CONSORTIUM (OCFC)
 
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Dolphin said:
https://www.sciencenorway.no/covid1...is-neither-psychological-nor-physical/2503062

OPINION:

2498925.webp

Responding to criticism: Modern brain research provides new insights into long-term symptoms and explains how symptoms can arise both with and without signals from the body, writes Silje Endresen Reme (pictured)

(Photo: Universtity of Oslo)
Long Covid is neither psychological nor physical
OPINION: We don’t believe there is one single way out of Long Covid – we believe there are several.
Silje Endresen Reme
PROFESSOR AT THE UNIVERSITY OF OSLO AND CHAIR OF THE BOARD, OSLO CHRONIC FATIGUE CONSORTIUM (OCFC)
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Their explanations are so banale:
Symptoms and the brain – a new understanding
We all recognise that patients’ symptoms – whether pain, fatigue, or nausea – are real and often disabling. Modern neuroscience provides a powerful lens for seeing how these symptoms can emerge and persist, even when no overt tissue damage or active disease process is present.

At the heart of this insight is the theory of predictive processing, a biologically grounded model of brain function. Far from merely repackaging old psychosomatic thinking, predictive processing is supported by a growing body of experimental and clinical evidence.

It describes how the brain continuously generates predictions about incoming sensory information – and how mismatches between expectation and reality can give rise to conscious sensations and, ultimately, symptoms.

Consider phantom limb pain, where an amputee still experiences 'pain' in a missing limb because the brain continues to expect signals from that area. Or the rubber hand illusion, which shows how the brain can be tricked into feeling touch or temperature in a prosthetic hand.

Even everyday experiences like conditioned nausea – where the sight or smell of food that once caused food poisoning triggers nausea weeks or months later – demonstrate how past experience shapes present sensations.

When the alarm freezes
A similar process may underlie persistent fatigue. In one study, researchers paired a neutral sound with intense mental exhaustion following a challenging cognitive task. After repeated pairings, simply hearing the sound alone was enough to induce genuine fatigue – no further exertion required.

These examples illustrate how the brain’s 'alarm system' – designed to protect us – can become hypersensitive and remain activated long after any real danger has passed. Just as a fire alarm reacts as loudly to a waft of steam as to actual flames, the brain can generate very real symptoms even when the body is no longer under threat.
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Reme also has this comment on LOTECA and SIPCOV:
Clarifying key studies
Two recent Norwegian investigations have been cited in ways that risk confusion:

1) The Loteca study tracked 382 young people after Covid-19 infection alongside 85 never-infected controls for six months. At follow-up, 49 per cent of the Covid group and 47 per cent of controls had symptoms that met WHO’s criteria for Long Covid – virtually the same proportion.

A narrower diagnosis of post-infectious fatigue syndrome (PIFS) was slightly more common in the Covid group (14 per cent vs. 8 per cent) but did not reach statistical significance. No biological marker reliably predicted who developed persistent symptoms; factors such as low baseline physical activity and loneliness stood out as important predictors.

2) The SIPCOV study enrolled 310 patients with Long Covid to compare a brief (2–8 hour) interdisciplinary intervention against standard care. Patients in the intervention arm were twice as likely to be classified as recovered – and these gains held steady at the one-year follow-up.
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With the finishing touch of:
Moving forward, we urgently need open dialogue, informed by respect for patients’ experiences and a commitment to rigorous science.

We welcome dialogue with all who share this commitment.
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