Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

Not sure how relevant this is, it's just something I came across randomly while looking for something else. One of the authors is Mats Lekander (member of the Oslo Consortium). The sickness response hypothesis is big among Swedish BPS proponents including Jonsjö, Andreasson and Olsson.

Lipopolysaccharide-induced changes in the kynurenine pathway and symptoms of sickness behavior in humans
https://www.sciencedirect.com/science/article/pii/S0306453023000884
 
According to an announcement by the Swedish Research Council yesterday, Oslo Consortium member Elin Lindsäter is being awarded two grants, 5 million SEK in total (approx 370 000 GBP, 423 000 EUR or 445 000 USD), for her research project Fatigue as a transdiagnostic symptom dimension: Identification and treatment in primary care (Original project title: Utmattning som transdiagnostisk symtomdimension: Identifikation och behandling i primärvård).

Research competence within primary care
https://www.vr.se/english/applying-...-research-competence-within-primary-care.html

Forskningskompetens inom primärvården 2023
https://www.vr.se/soka-finansiering...rskningskompetens-inom-primarvarden-2023.html
 
Translation of the email from the above post:

Taking part in the work of revising the national guideline for long-lasting fatigue of unknown origin, including CFS/ME

We, as part of the Oslo Chronic Fatigue Network, an international professional network of 51 dedicated clinicians and researchers establised in october 2022, are aware there has been send out invitations to user organisations. We wish with this to register our interest to be included in the working group that will revise the national guideline for long-lasting fatigue of unknown origin, including CFS/ME.

Our group represent a unique combination of professionals that diagnose, treat and research long-lasting fatigue of unknown origin, including CFS/ME. With our knowledge of chronic fatigue, in addition to our work with the Oslo-declaration about chronic fatigue syndrome in september 2023, we are very motivated to contribute to the revision of the guideline.

We are fully aware and recognize the importance of including perspectives from different health conditions that can overlap with long lasting tiredness, especially among cancer patients where the prevalence of long lasting tiredness is documented to be substantial. It is estimated that 20-30% of cancer patients experience long lasting tiredness, and the causes remain unclear or not understood. This underscore the need to include relevant organizations that represent this patient group in discussions about user representation in the working group.

Our expertise goes from practical clinical work to strong involvement with research, and we wish to contribute with our experience- and research-founded knowledge to secure that the guidelines reflect both patients and clinicians need in an optimal way, at the same time as we secure a solid science foundation for the guideline.

We ask for the opportunity to engage in this important work and wish to be allowed to contribute with our competence in the external working group. If needed we will be able to send more detailed information about our proposed representatives and their contributions to the revision work.
For Birgitte Boye and Silje Reme:
Birgitte Boye

Birgitte Boye
Manager, professor, senior physician PhD MHA
Unit of psychosomatisation/CL (consultation-liaison psychiatry)
Clinic for mental health and dependence*
Adress

*Not sure what the correct translation would be for the clinic name, "dependence" here is drug dependence.
 
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Do we know why Norway is choosing to create guidelines for fatigue in general rather than for specific conditions? It rather feels that this is already well down the BPS psychogenic rabbit hole, where instead of developing condition specific solutions there is ever greater lumping together of diverse and unrelated conditions to justify irrelevant generic responses.

It is on a par with suggesting a general limping therapy for all conditions with leg and hip involvement, regardless of aetiology.
 
I suspect it saves money.
Hopefully we will have some numbers on the cost of lack of care of pwME in Norway soon, I think part of the Tjenesten and MEg project has looked into this (patients reduce work and thus taxes ~three years prior to diagnosis, have increased health care use and not least there is the substantial care burden from family that I seem to remember was mentioned as something to look at).
 
What a weird letter. Mostly overlooks their past, uh, "work", makes much about cancer fatigue, for some reason, and a mockery of talking about representing some groups of patients, which they do not. As if writing a widely condemned letter filled with nonsense is notable work.

Obviously these people should never come anywhere near anything related to fatigue, or frankly about anything related to health, even remotely, but I suspect they will be welcome. We haven't had decades of abject failure without the failure being well-represented.
 
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The "motivated' bit is a red flag too.

I have no doubt they are dedicated and motivated. Just not to serving the interests of patients.
But they are fully aware of and recognize the importance of including this perspective :thumbup:

@rvallee There was that study on using the lightning process on teens with cancer related fatigue from some of the members of the consortium, we have a thread on it here: Does the Lightning Process Training Programme Reduce Chronic Fatigue in Adolescents and Young Adult Cancer Survivors? 2021, Fauske, Reme et al
 
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Mark Vink's response to this was rejected by the journal and so has been posted as a pre-print.



Decade old approach, relabelled as a new one by the Oslo Chronic Fatigue Consortium, is harmful and does not lead to objective improvement in ME/CFS or long Covid

Abstract
The article by the Oslo Chronic Fatigue Consortium led by Alme, does not provide any scientific evidence for their "alternative narrative" which in reality has been dominating the field of ME/CFS and post infectious diseases for the last 35 years. Additionally, they ignore the overwhelming amount of evidence that ME/CFS and long Covid are physical diseases. Moreover, their own studies show that gradually increasing exercise/activities does not lead to objective improvements and has a negative instead of a positive effect on work and illness benefit status. Additionally, NICE concluded in October 2021 that gradually increasing
exercise/activity is harmful and should not be used. If the medical profession had taken post infectious diseases seriously as we should have, instead of psychologising them for decades, then by now we would have had many different effective pharmacological treatments for long Covid and ME/CFS and the world would not be clutching at straws on how to treat the estimated 65 million patients with long Covid.

https://osf.io/preprints/osf/xe82n
 
Mark Vink's response to this was rejected by the journal and so has been posted as a pre-print.



Decade old approach, relabelled as a new one by the Oslo Chronic Fatigue Consortium, is harmful and does not lead to objective improvement in ME/CFS or long Covid

Abstract
The article by the Oslo Chronic Fatigue Consortium led by Alme, does not provide any scientific evidence for their "alternative narrative" which in reality has been dominating the field of ME/CFS and post infectious diseases for the last 35 years. Additionally, they ignore the overwhelming amount of evidence that ME/CFS and long Covid are physical diseases. Moreover, their own studies show that gradually increasing exercise/activities does not lead to objective improvements and has a negative instead of a positive effect on work and illness benefit status. Additionally, NICE concluded in October 2021 that gradually increasing
exercise/activity is harmful and should not be used. If the medical profession had taken post infectious diseases seriously as we should have, instead of psychologising them for decades, then by now we would have had many different effective pharmacological treatments for long Covid and ME/CFS and the world would not be clutching at straws on how to treat the estimated 65 million patients with long Covid.

https://osf.io/preprints/osf/xe82n

An excellent article.

I was struck by the irony of this article being rejected in the context of the following statement in the Abstract to the Oslo Consortium article: “Finally, we call for a much more open and constructive dialogue about these conditions. This dialogue should include a wider range of views, including those of patients who have recovered from them.”

Does this then mean ‘a wider range of views as long as they agree with us’?
 
Opinion piece by Lekander and others, published today in the journal of the Swedish Medical Association:

Cartesiansk dualism i ohälsans otjänst – nytt steg efterlyses
Vi behöver bli bättre på att kommunicera kring kropp och »själ«
https://lakartidningen.se/klinik-oc...lism-i-ohalsans-otjanst-nytt-steg-efterlyses/

Google translate, English
Auto-translate said:
Cartesian dualism in the service of ill health - new step called for
We need to be better at communicating about body and "soul"

Key messages

Although everything that happens in the body is biological, we express ourselves as if bodily and mental processes are separate.

Such dualistic language seems to have implications for how we think about health and the care we provide.

We need a medical language that does not suggest outdated models of the human being. [...]

In some cases, a dualistic approach seems to have had particularly unfortunate consequences. In the 1980s it was claimed that ME (myalgic encephalomyelitis, later ME/chronic fatigue syndrome or ME/CFS) was psychological in nature. This led to strong reactions from some sufferers. In other words, the problem was psychosomatic, functional, somatoform and psychogenic and was therefore only in the head and was one's own fault?

We all recognise these unfortunate notions that separate physical from mental processes. Surely problems with the former should be dealt with by a doctor and the latter by oneself? Understandably, sufferers protested against this devaluation, which perhaps also reduced the chances of funding research into the 'true cause' of the condition.

In the field of ME/CFS, a trench warfare began between individuals who wanted to see an explanation at a primarily biomedical level and others who wanted to involve the brain and behaviour to a greater extent. These conflicts have contributed to the harassment of researchers who ask the question of whether physical exercise or psychological treatment can be useful as an additional treatment [3].

A recent interdisciplinary meeting one of us attended was kept secret for security reasons and had to be guarded by guards. One of the researchers declined an interview because of all the concerns that were expected to follow publication; another attended because the damage activists can inflict "can't get any worse".

The point here is not to take a position on the cause of the condition or how best to treat it, but to point out the negative consequences of maintaining an artificial distinction between models and treatments that are entirely biomedical and those that involve behaviour.

With regard to conditions where severe fatigue is a key symptom, the situation varies markedly between countries, and this affects what is focused on as disease mechanisms. In the UK and Norway, the infection hypothesis (ME/CFS) gets a lot of attention; in Finland, there is a lot of debate about 'sick houses' (chemical sensitivity); in Sweden, the negative consequences of stress, often prolonged work stress (exhaustion disorder), are discussed.

The problems of multifactorial conditions that overlap at the level of symptoms seem to highlight the importance of explanatory models and the consequences for treatment, sick leave and societal interventions - and the individual's hope for recovery [4] - these have. [...]

References
3. Hawkes N. Dangers of research into chronic fatigue syndrome. BMJ. 2011;342:d3780
4. Oslo Chronic Fatigue Consortium; Alme TN, Andreasson A, Asprusten TT, et al. Chronic fatigue syndromes: real illnesses that people can recover from. Scand J Prim Health Care. 2023;41(4):372-6.
 
Oh, by free speech they mean that they speak and you're free to listen. Easy confusion. They've always worked to censor and silence us, and have been very effective at it.

Then several of them will keep on harping about free speech and censorship, as they have for years while they do everything in their power to make us disappear, to make sure no one hears us and that our very lives are not even recorded accurately.

For this journal it's a really bad look, but they expect zero consequences for it and they're right about it. That's the privilege of holding power. They don't have to be honorable about it when the intent is just to win. With power comes the need for grace, to be above pettiness and to withhold from abusing that position. But without that abuse, none of this stands up. Abuse and lies are all they've ever had.
 
Opinion piece by Lekander and others, published today in the journal of the Swedish Medical Association:

Cartesiansk dualism i ohälsans otjänst – nytt steg efterlyses
Vi behöver bli bättre på att kommunicera kring kropp och »själ«
https://lakartidningen.se/klinik-oc...lism-i-ohalsans-otjanst-nytt-steg-efterlyses/

Google translate, English
A "new" step. That is the old step. Their step, and only that. Always. They can't even define or name what that step is, because it's always the same step, back well over a century. Talking against dualism and about body and soul. Or body and mind, if it's just lost in translation.

And they speak of a conflict between biological and psychospiritual, but in reality it was always a conflict between an accurate description, and an inaccurate one. It's not even about models, the split begins at its very description, and several ways at that. But to bring out the old debunked tropes about harassment, even the fake concerns over their meeting and need to have "guards" out of concern is ridiculous.

This nonsense has been going on for decades and all they have is bullying and acting without honor, even speaking without honor, misrepresenting both what they do and the criticism it receives.

Ironically, the mention of how it's defined culturally differently in different countries actually highlights how they are the problem, since it's not patients who describe those problems this way but the professionals, with their biases and preferences. Even though the problems are largely similar as reported by patients, they have very different definitions because those definitions come from the preferred alternative causes that professionals assign on them. We define the illness according to how it's experienced and reported, they define it according to alternative models that ignore most of it.

This is like how many religious ideologies have invented myths about the same phenomena of nature. Even though nature is the same everywhere. The difference is not between nature here, and nature there. It's in the myths.

And really you have to marvel at the Orwellian peak of this:
The point here is not to take a position on the cause of the condition or how best to treat it, but to point out the negative consequences of maintaining an artificial distinction between models and treatments that are entirely biomedical and those that involve behaviour.
You won't find purer irony than this anywhere. It has no traces of impurity.
 
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