Utsikt
Senior Member (Voting Rights)
Where have we seen that before..?
I hope they give a prompt and public response where they explain why. I also hope that any adjustments made in this period will be documented.
2025-2026 Norwegian chronic fatigue guidelines - draft published
- Thread starter Lena Kjempengren
- Start date
I hope they give a prompt and public response where they explain why. I also hope that any adjustments made in this period will be documented.
Something I hadn't seen is that patient organisations have shared the name of the new guideline, and apparently "CFS/ME" has been changed to "ME/CFS" if we can go by the name used in their blog posts 
Edit to clarify: When I say "shared" I don't mean they have shared "this is the new name of the guideline", but that in blogposts their quoted name of the guideline uses ME/CFS.
Edit to clarify: When I say "shared" I don't mean they have shared "this is the new name of the guideline", but that in blogposts their quoted name of the guideline uses ME/CFS.
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Kalliope
Senior Member (Voting Rights)
The draft of the new guidelines were supposed to be published last week for public review, but got postponed. Today the Norwegian ME Association shared the following message on Facebook (auto translated):
Regarding the postponement of the publication of the consultation draft for new guidelines: The Norwegian Directorate of Health has informed us that the postponement is due to some members of the advisory group dissenting. They hope to be able to send out the document, along with the reasons for dissent, within the next week.
At present, we do not know who or how many have dissented, or what the reasons are.
As mentioned, this information will come next week as planned.
Regarding the postponement of the publication of the consultation draft for new guidelines: The Norwegian Directorate of Health has informed us that the postponement is due to some members of the advisory group dissenting. They hope to be able to send out the document, along with the reasons for dissent, within the next week.
At present, we do not know who or how many have dissented, or what the reasons are.
As mentioned, this information will come next week as planned.
Utsikt
Senior Member (Voting Rights)
Unless the ME/CFS and LC associations have completely blindsided the patients and not told anyone that they are dissenting, the only other option is that it’s the BPS folks. That would be good news.
Edit: if they don’t know how it is, it can’t be the ME association.
This info should have been communicated alongside the notice of delay.
bicentennial
Senior Member (Voting Rights)
Although its only at the draft stage, it was ready to publish. So this dissent seems to have bided its time, then signalled its dissent only at the last minute, in a cliff-hanger, when all else failed - or to exert more leverage. I doubt it just happened.
Whichever side of the divide dissented, I suspect incompatibility since psycho-social theory insists that ME/CFS is a manifestation of the mind, failed to gather clinical evidence for its unaccountable, highly subsidised method, and resorted to coercion.
.
Or else all sides dissented with some inevitably frustrated, unrealistic compromise.
In the past, at a final stage, this kind of cliff-hanger signalled a highly organised, highly publicised and persistent rebellion in the ranks of public service, unwilling to apply differential diagnosis in:
- adult and child protection aka (safeguarding), police and justice services
- state and estate insurance, social housing and other social services
- education, training, employment, publishing, health and research services
It is all a question of standardising due procedure, allowing front-line authorities to exercise some discretion, but only within well-defined limits,
Some services do seem unwilling to serve, preferring to rule. We shall see if the draft was worth objecting to, or if the objection is theoretically confused
Sadly the pandemic scale has produced 2 conflicting expedients, but I gather that Germany is insisting on a united and continent progress one would not want to be left out of
Whichever side of the divide dissented, I suspect incompatibility since psycho-social theory insists that ME/CFS is a manifestation of the mind, failed to gather clinical evidence for its unaccountable, highly subsidised method, and resorted to coercion.
.
Or else all sides dissented with some inevitably frustrated, unrealistic compromise.
In the past, at a final stage, this kind of cliff-hanger signalled a highly organised, highly publicised and persistent rebellion in the ranks of public service, unwilling to apply differential diagnosis in:
- adult and child protection aka (safeguarding), police and justice services
- state and estate insurance, social housing and other social services
- education, training, employment, publishing, health and research services
It is all a question of standardising due procedure, allowing front-line authorities to exercise some discretion, but only within well-defined limits,
Some services do seem unwilling to serve, preferring to rule. We shall see if the draft was worth objecting to, or if the objection is theoretically confused
Sadly the pandemic scale has produced 2 conflicting expedients, but I gather that Germany is insisting on a united and continent progress one would not want to be left out of
This is nerve wracking.
Sly Saint
Senior Member (Voting Rights)
hmm deja vu
bicentennial
Senior Member (Voting Rights)
Norway's continental research representative, so far one confirmed speaker from Norway:
Continental incentives for compatible continental Guidelines, including new extensions of the Research Register, updates and reviews, to help Norway search for literature:
The inspiration highlighted was for fundraising, but for now I left out the fundraising as its this convergence I want to highlight here, now extending to Norway and Iceland, and very compatible.
This news was from Gernany's charitable research foundation, organising across continents
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Utsikt
Senior Member (Voting Rights)
In a new update (by the association) the health department say that they have needed more time to finalise the draft and preparing the publication of the public hearing.
They also say that a small group (presumably two or more) have withdrawn from the working group (the working group made no decisions, and only provided input).
It is also mentioned that «many in the group» would like to make «large changes» to the draft, and that disagreement in expected in a process like this.
———
My personal speculation is that Recovery Norway have withdrawn because LP/brain-retraining hasn’t been recommended or might even be warned against.
They also say that a small group (presumably two or more) have withdrawn from the working group (the working group made no decisions, and only provided input).
It is also mentioned that «many in the group» would like to make «large changes» to the draft, and that disagreement in expected in a process like this.
———
My personal speculation is that Recovery Norway have withdrawn because LP/brain-retraining hasn’t been recommended or might even be warned against.
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NelliePledge
Senior Member (Voting Rights)
Well as @Sly Saint said up thread Deja vu
Kalliope
Senior Member (Voting Rights)
The draft has now been published online.
www.helsedirektoratet.no
Utmattelse – langvarig utmattelse, inkl. ME/CFS HØRINGSUTKAST
www.helsedirektoratet.no
Kalliope
Senior Member (Voting Rights)
4 people from the working group have taken dissent. Their statements with their reasoning are published in full in the first chapter of the draft.
Tom Farmen Nerli is specialist in rehabilitation and says the guidelines will have a nocebo effect, encourages avoidance and removes hope of recovery.
Psychologist Linn Breen Herner says the message is too far apart from the fundament that she and her colleagues are building their practice upon at Oslo University Hospital. She point to advice and activity and that patients are advised to decrease and stabilise with deterioration. She wants more emphasis on recovery and how to recover.
Ingjerd Helene Jøssang is a GP and represents the Norwegian Association for GPs. She says there is too much emphasis on avoiding activity, and that they have evidence and experience that this causes more harm than good. The rehabilitation perspective on improvement and recovery is too small.
Peter Prydz is a GP and represents the Norwegian Association for GPs and has the same text as Jøssang.
However, this is an auto translation from the first chapter on background, method and process of the guidelines. If they are unhappy with this, I do wonder what could have been written..:
As with other long-term conditions, fatigue is seen in a biopsychosocial perspective, where health and symptoms are influenced by an interaction between biological, psychological and social factors. A comprehensive understanding of the individual patient's challenges is necessary to provide tailored health care that can contribute to recovery and increased quality of life. The patient group covered by the guideline is very heterogeneous and there is great variation in symptom patterns, functional level and life situation. Individual challenges and needs must therefore be identified in the assessment, and addressed in treatment and follow-up. What works for one patient is not necessarily useful for another. The recommendations have been prepared in a longitudinal perspective with the aim of addressing the need for an individual approach.
The guideline does not initially distinguish between recommendations for patients with long-term fatigue and patients with ME/CFS. Many patients with ME/CFS describe exercise-induced exacerbations (PEM) as a symptom that contributes to exacerbation if it is not taken into account. PEM may also be present in other patients, for example in late sequelae of COVID-19. The recommendations emphasize adapting healthcare to the patient's symptoms, which also includes PEM. The Directorate of Health has therefore chosen to mention PEM where relevant.
Tom Farmen Nerli is specialist in rehabilitation and says the guidelines will have a nocebo effect, encourages avoidance and removes hope of recovery.
Psychologist Linn Breen Herner says the message is too far apart from the fundament that she and her colleagues are building their practice upon at Oslo University Hospital. She point to advice and activity and that patients are advised to decrease and stabilise with deterioration. She wants more emphasis on recovery and how to recover.
Ingjerd Helene Jøssang is a GP and represents the Norwegian Association for GPs. She says there is too much emphasis on avoiding activity, and that they have evidence and experience that this causes more harm than good. The rehabilitation perspective on improvement and recovery is too small.
Peter Prydz is a GP and represents the Norwegian Association for GPs and has the same text as Jøssang.
However, this is an auto translation from the first chapter on background, method and process of the guidelines. If they are unhappy with this, I do wonder what could have been written..:
As with other long-term conditions, fatigue is seen in a biopsychosocial perspective, where health and symptoms are influenced by an interaction between biological, psychological and social factors. A comprehensive understanding of the individual patient's challenges is necessary to provide tailored health care that can contribute to recovery and increased quality of life. The patient group covered by the guideline is very heterogeneous and there is great variation in symptom patterns, functional level and life situation. Individual challenges and needs must therefore be identified in the assessment, and addressed in treatment and follow-up. What works for one patient is not necessarily useful for another. The recommendations have been prepared in a longitudinal perspective with the aim of addressing the need for an individual approach.
The guideline does not initially distinguish between recommendations for patients with long-term fatigue and patients with ME/CFS. Many patients with ME/CFS describe exercise-induced exacerbations (PEM) as a symptom that contributes to exacerbation if it is not taken into account. PEM may also be present in other patients, for example in late sequelae of COVID-19. The recommendations emphasize adapting healthcare to the patient's symptoms, which also includes PEM. The Directorate of Health has therefore chosen to mention PEM where relevant.
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rvallee
Senior Member (Voting Rights)
This is just embarrassing. I cannot wrap my head around the idea of insisting so strongly on being wrong while inflicting so much harm and misery. They are explicitly demanding false information, lies and bullshit, really, even as a middle ground has already diluted things in their favor to the point of ending up useless. It's beyond clear that without a biological understanding, health care does more harm than good, so anything that isn't all about solving this is pointless, entirely because of this oppositional defiance rooted in "Imagine a world"-based medicine.
Well, someone's gotta do the work on that, buddy. It hasn't been done, because of junk like that.
When you look at the history of scientific breakthroughs, more often than not, the people who worked on them were pariahs, treated with hostility by the vast majority of their peers. And in most cases, when they describe their work, they almost always say things like "I just knew, I never gave up, I knew I was right and I just kept pushing", but so do the people who got it all wrong. They are just as certain and relentless in their pursuit of being wrong.
Meanwhile, not a single breakthrough has ever been achieved using the methods pushed by biopsychosocial ideologues, the reasons they gave for dissent here. Not a single one. But they still push and push, no matter how much misery they inflict. Human judgment is just damn awful for the most part, and should never be relied upon.
Imagine doing worse than a freaking LLM when LLMs aren't even reliable yet. I can't process this much wrong, it conflicts with everything that makes me who I am.
And as usual the dietitian’s association is not on the list of organisations they ask for input. This of course doesn’t mean the association can’t write something, but it says something it is not seen as important.
And as I have mentioned before, this guideline is for fatigue which is a symptom for many diseases. For disease specific guidance look at the disease-specific guidelines. So we don't have a disease apparently, only symtoms.
exercise-induced exacerbations (PEM)
It is not exercise induced, it is effort induced. These are fundamentally different.
The distinction matters because some want to keep the focus on physical exercise and hence the understanding limited to deconditioning type interpretations, not on the broader phenomenon of all effort being a problem.
Indeed … and thereby separate cognitive exertion from eg long admin conversations being labelled as not due to something related to exhaustion and illness but ‘a cognitive dysfunction’ type misdirection
Utsikt
Senior Member (Voting Rights)
It’s correct in Norwegian, the autotranslation messes it up