Oslo Chronic Fatigue Network

Their website:

https://www.oslonetwork.no/about-us

 

What's alternative about it? It's been the predominant paradigm in official guidance and in the medical literature until very recently. Most governments' guidelines have until recently been oriented towards their viewpoints. Oodles of research funding has gone their way.

Wonder why no-one thought of that before. A singularly alternative view, isn't it?

This is actually quite puzzling.

Time to consider? Again, theirs has been the predominant paradigm until very recently. In the UK all official pre-2021 guidance - CG53, the RCP report from the 1990s - took the BPS view. Only recently has that begun to change.

This represents a fundamental misunderstanding of what is and what is not ethical. It is not remotely ethical to give a patient unevidenced explanations for their symptoms. Often their approach involves some level of implicit or explicit coercion (ranging from encouraging stimulus-challenge in a patient reporting adverse effects all the way through to sectioning & deliberately isolating patients). Some of their practices raise the most serious of ethical questions that there are in medicine.

And there are plenty of books, online stories, and more recently systematic promotion by researchers of precisely these narratives on sites like RN. In my opinion a further ethical problem arises when researchers deliberately promote stories claiming benefit and deliberately ignore stories of harm.

 

See Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium for further discussion of them.

 

Well, at least they give the strong impression that nobody ever believed in what they have been saying for 50 years (their first paper is dated 1977). The PACE trial never existed. Odd to pretend you never existed.

 

"
Affiliations
MindBodyLab, University of Oslo
EAPM European Association of Psychosomatic Medicine"

The website is a whole lot of fantasy (and not the readable kind)....

 

A lesson in sophism isn't it. Almost like a philosophy exam where you have to learn the different aspects of fallacial argument and reply like a reading comprehension to where they are.

Thanks for going through it so well.

Apalling that we have to do it.

I'm aware of free speech but this should come with a label of the 'ism' and propaganda that it is as a group, it's one thing holding a position as a theoretical academic and doing this sort of thing on the side (where it's a spectacle to watch a debate of) but I'm starting to think there should be questions about responsibility in public life that I think @NelliePledge mentioned on another thread, and safeguarding/spokesperson type issues if there are positions which directly great a power differential and a responsibility over others etc. - in a lot of people/sectors/situations these two things are normally separated.

 

Yes this is the perpetrators of something that did and continues to do harm directly via their treatments and directly via their spreading of misinformation believing that they can avoid apologising or acknowledging.

If they actually were responsible souls bothered about either the future of psychology or the patients having access to any of that side if and when it is relevant to some then they would have understood that their stepping aside and mea culpa was vital so that they ceased to tar those profession(s)/broader area.

I'm pretty sure that it would be a first if these individuals adopted an ethical approach or evidence that was sound and not based on bias (so it is informed consent rather than misled consent), so it is very naughty using the non-sequitur of 'it is crucial that' to infer they are concerned about it - past and future?

The irony of wording things to mislead even in the line about ethics. Says it all as a 'when people show you who they are' etc to me

I think once you've taken advantage of access to something that might influence someone's mind, and safety/life, and got it so wrong it probably potentially harmed - and carried it on for so many years without checking for harms - then the only honourable thing to do is realise you can't be near those people, nevermind have power over how they are perceived.

It is indeed coercion and all of those other undesirable and problematic inappropriate things that shouldn't be involved in a position of responsibility. Add a heighten aspect to it where 'mind' is involved.

 

Is this some kind of sick joke? “Defend discredited strategies for recovery to the last drop of blood” would be more accurate.

 

This is pretty much like a dictator in power for decades running an election attacking the current government, which they've been controlling for decades, and running as a new bold reform candidate while at the same time boasting about their numerous accomplishments. Which is a thing that happens in dysfunctional nations. It's basically a test of loyalty that everyone sees through but you have to play pretend.

The most impressive thing remains that almost no one in medicine calls it out, instead encourage and promote it. These people are so completely full of shit and yet everyone pretends like they're serious people. You could show this to most MDs and they'd see nothing wrong with it, even if you explain it step-by-step, even if they'd readily admit that this has been the paradigm for several decades. It's completely baffling. Speculative fantasy-based health care. Absurd.

This, especially:

They can? Such as? Because it's been out there for years. And no such insight has been put forward. It has been heard. While the vast majority of voices have been silenced. Including in the research of the people involved in this, which features it. It's all complete fiction. A "imagine a world where" that happens to describe the current reality in all its miserable failure, but none of it matters.

Frankly this needs to be taken into account on what mental illness is. It's fully delusional.

 

Opinion piece today on a Norwegian website for research and debate signed by the following board members of Oslo Chronic Fatigue Network:
Silje Endresen Reme
Helene Liira
Michael Sharpe
Markku Sainio
Trudie Chalder
Paul Garner
Charlotte Ulrikka Rask

Vi utfordrer oppfatningen om at kroniske utmattelsestilstander er uhelbredelig

google translation: We challenge the perception that chronic fatigue states are incurable

quote:

The Oslo Chronic Fatigue Network is a European network of researchers and clinicians, some of whom are also former patients. We recommend a holistic approach to people with chronic fatigue conditions such as "Long Covid", ME and burnout.

This understanding is based on recent research and offers hope to those who suffer from these conditions. These conditions can be serious, as they lead to many dropping out of school or work, causing great despair and significant societal costs, in addition to the suffering.

We believe it is possible to achieve significant improvement, and even full recovery, from conditions of long-term fatigue and associated symptoms.

 

Cool. Unfortunately my problems not long term fatigue, but an illness defined by PEM.

 

It's a bit like the man with the sandwich board in Golders Green High Street calling people to repent their sins and love Jesus (and yes, ours is a Jewish neighbourhood although I am a Celtic atheist).

 

Oslo Chronic Fatigue Network on CFS and CBT.

https://www.sciencenorway.no/chroni...-fatigue-conditions-are-not-incurable/2439883

 

We have years of studies showing that about half of people recover in a year without doing anything, which completely negates their entire framing. It's madness how little facts matter in health care sometimes. It's such an extreme level of reality denial.

Even politics is usually less dishonest because although you can get away with distorting the truth a lot, in most cases you can't actually piss on people's legs and have them fill questionnaires that it's actually raining. It takes decades of sustained propaganda and regulatory capture to even get a fraction of this, and all it takes is abusing authority they are clearly showing they never deserved.

 

Henrik Børsting Jacobsen and Silje Endresen Reme recently wrote an article about their Mind-Body Reprogramming Therapy (MBRT) as a new treatment for Long Covid for a journal for psychology.

Today they got an excellent reply from Gunhild Alvik Nyborg, Arne Søraas, Sofie Buer and Anders B. Nygaard. The authors walk us through several fallacies in this BPS approach and also touch upon mistakes done regarding ME.

I hope the automatic translation is readable.

Feilaktig fremstilling av kunnskapsgrunnlaget for post-covid condition (long covid)

translation:
Misrepresentation of the knowledge base for post-covid condition (long covid)

quote:

In an article in the Psykologtidsskriftet on December 2, Silje Reme and Henrik Jacobsen describe a new treatment program, Mind-Body Reprogramming Therapy (MBRT), which they have developed for patients with significantly reduced functional levels as a result of post-COVID condition (PCC), also called long covid ( Reme & Jacobsen, 2024 ). They claim that the program was developed “based on the existing knowledge base about long covid.”

Unfortunately, the authors fail to present this knowledge base. We therefore feel compelled to point out what we consider to be significant errors in several of the claims, and to highlight ethical concerns about the project that follows.

 

Great article and especially liked this section

Problematic ethics of MBRT

Despite faulty or missing documentation, the authors reason their hypothesis: The symptoms may be “reversible consequences of processes such as prolonged stress.” They believe that MBRT “given over four hours together with digital follow-up is effective enough to recover adults from long covid.”

The similarities between MBRT and the Lightning Process (LP) are striking. LP is a controversial treatment method that was discouraged for patients with ME/CFS by the National Institute for Health and Care Excellence (NICE) in 2021 (2024). The method is nevertheless used by non-healthcare professionals in Norway.

According to the authors, part 1 of MBRT aims to “update the brain’s expectations so that the alarm is turned off and symptoms are reduced and/or disappear”. This involves convincing the patient that there is no biological disease. The premise must then be that biological changes in PCC are so minimal (or absent) that it is reasonable to refrain from providing other treatment. Science does not support such a view. We believe it is ethically irresponsible to deliberately convey incorrect information to patients.

Part 2, like LP, consists of exercises aimed at stress regulation and “processing of symptom alarms”. Patients are instructed to carry out activities even if symptoms appear during activity, and even if they are experienced as frightening. However, it is ethically problematic not to screen patients for post-exertional symptom exacerbation (PESE, also called PEM), which some patients with PCC suffer from (Twomey et al., 2022), before such measures. The symptom has been presented as unimportant by members of the Oslo Chronic Fatigue Consortium, to which Reme belongs (Kristiansen, 2023; Oslo Chronic Fatigue et al., 2023; Oslo Chronic Fatigue Consortium), but patients with PESE have long experience that exceeding the tolerance limit can lead to long-term and serious worsening of the symptoms (Kristiansen, 2023). In 2015, the National Research Center for Complementary and Alternative Medicine (NAFKAM) reported that 15 out of 41 patients had an “unusual adverse outcome” after LP (Baumgarten-Austrheim et al., 2015). New knowledge finds that in PESE, activity that exceeds the patient’s tolerance limit can lead to muscle damage, possibly irreversible (Appelman et al., 2024).

 

I wonder how long this junk will continue to be treated like a favorite child who can't do no wrong despite being a thieving drug junjie who has never gotten anything done. It has zero basis in reality and has no scientific evidence, and still it's currently dominating as the fastest growing idea in health care. Will it just keep reducing in size as science solves independent parts, taking them off their hands one bit at a time? Sure looks like it.

At some point, one of the biggest issues that AI will face is people simply refusing to budge on ideological positions, and demanding that AIs acknowledge their worldview as the one Truth. This will apply mostly to political issues, especially wedge issues, problems that strongly divide people, as well as to odd beliefs like creationism. But it will apply even more here, because it will be the experts themselves who will be unwilling to accept that the thing that gets everything else right isn't wrong about that, and that, no, logical fallacies are not proper foundations for any theory, no matter how strongly they believe in its conclusions.

 

Opinion piece on stress and exhaustion disorder, in one of Sweden's largest newspapers, by a group of researchers including Elin Lindsäter and Mats Lekander.

”Sluta använda begreppet stress om allt och alla”
https://www.dn.se/debatt/sluta-anvanda-begreppet-stress-om-allt-och-alla/

 

The chairperson of RME and the chairperson of FSI are proudly and smilingly posing for a selfie together with Oslo CF Network member/BPS proponent/BPS researcher Elin Lindsäter and her collaborators, in a picture published by FSI after a meeting with Region Stockholm's Health and Medical Board yesterday.

What is going on?!

I stand with @MittEremltage and her thoughts on this:

Brist på kunskap – eller dåligt omdöme?
https://mitteremitage.wordpress.com/2025/01/18/brist-pa-kunskap-eller-daligt-omdome/

RME has not published anything on their website or social media about the meeting.

Janusinfo is a non-commercial website providing drug information to support healthcare professionals in their everyday work published by the Drug Therapeutic Committee and the Health and Medical Care Administration of the Region Stockholm, Sweden. It is sometimes used as, and referred to, as a kind of guideline.

Here's Janusinfo's news article from 2023, saying that there are no curative pharmacological treatments for ME/CFS and therefore there are no drug recommendations for ME/CFS, ‘Medication to relieve symptoms of depression, pain, insomnia and palpitations may be of value on an individual basis.’
https://janusinfo.se/nyheter/nyhete...idmecfssaknas.5.123ab49718aa56e7b9d5a5b0.html

Forum thread on Lindsäter's study:
https://www.s4me.info/threads/sweden-psychological-treatment-for-severe-fatigue-a-feasibility-study-lindsäter-et-al.39238/

Forum thread on the problematic changes to Region Stockholm's clinical ME/CFS guidelines:
https://www.s4me.info/threads/swede...to-region-stockholms-me-cfs-guidelines.39260/

There are lots of links with further info and sources, if you click through and scroll to the bottom of @MittEremltage's blog post.

 

RME Stockholm has written about the meeting in a post on their Facebook page today.

What I find the most interesting about this is that RME Stockholm are listing all the people who attended the meeting, but they have left out Elin Lindsäter's name(!). Why are RME Stockholm trying to hide this information, we have all seen the selfie already This is really, really weird... and definitely not okay

They have also closed the post for comments...

(Edited to add a screenshot.)

ETA: Archived version of the article on RME Stockholm's website: https://archive.is/DKWB1