Norway: 2026 Guidelines for chronic fatigue and ME/CFS - draft published

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.
 
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Kalliope said:
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.
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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.
She wants more emphasis on recovery and how to recover.
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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.
 
Kalliope said:
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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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.
 
Sean said:
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.
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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
 
Sean said:
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.
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It’s correct in Norwegian, the autotranslation messes it up
 
Lovely to see the position assumed out in the open defining itself at last

Quite possibly scoring an own goal while competing for contracts

I guess the objections are to:

1. PEM warranting exemption from the fringe rehab program which insists on treating 2 different cohorts, maximising its subsidy, so it must:

1a) get its Guideline to include both cohorts - then point out the incompatibilitiy of one program fixated on fringe rehab for both cohorts

1b) probably present the contrived nordic paper that PEM does not change outcomes in this rehab program - so no reason for exemption

I look forward to the quality control applied to evaluate the highly organised nordic PEM evidence. I guess the only marketable solution to this incompatible anomaly is:

- separate 2 Guidelines and 2 separate programs, removing the ME/CFS subsidy from the protesting fringe rehab program

2. I guess its 2nd objection is to the statement that this rehab program did not suit all patients - no one method or program suited all patients - so:

- this rehab program cannot keep its precious, highly treasured contract monopoly on the whole subsidy (needing expansion on post-pandemic scales to include for Long Covid). No more monopoly - tough heh

The same statement came out of Scotland - courtesy of Dr Janet Scott's top-level asessment: this rehab program does not suit some patients

The necessary ME/CFS program and the necessary fatigue program remain incompatible. There will be an arbiter because the fringe rehab program cannot tolerate losing its contract on ME/CFS. That is its case.
 
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Sean said:
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.
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They do also mention that «effort» can also be cognitive effort, not just physical.

Then again it’s buried under advice such as «enjoyable activities are more restorative (than non-enjoyable activities)», «find out what is most important to you», «set goals».

Of course your helpful health provider will help you find out what is enjoyable, important and would be a good goal to set.
 
This is from the section where they talk about the most severe. There is no mention about deaths.

These are back to back paragraphs. It feels like it’s written by two different people. Is this what compromise is supposed to look like?
A survey of patients with severe and very severe ME/CFS in Norway (Sommerfelt et al, 2023) reported fatigue as the most pronounced symptom, followed by muscle and joint pain, cognitive problems (brain fog), sleep disorders and sensory intolerance. Very seriously ill patients often had problems eating. A large proportion reported intolerance to light and sound. A very large number (approximately 70%) felt that they did not receive adequate health care, approximately half experienced adequate treatment for pain, sleep problems and stomach complaints. This supports the need for comprehensive, individually tailored follow-up.
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User experiences highlight that recovery from long-term fatigue and ME/CFS is possible through mental strategies, changed thought patterns and social support. Support from dedicated people to accompany them in the recovery process is highlighted as essential. Several describe that there have been periods of deterioration along the way, but that the right person at the right time contributed to hope and mental support. Similar experiences have been highlighted through qualitative interviews with people who have recovered (Bakken et al, 2023 and Krabbe et al, 2023). Other user experiences show that many have tried mental strategies, but several report a deterioration afterwards. Different experiences show that there is a need for more knowledge about what can contribute to a possible recovery.
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It is sounding pretty hopeless. I'm not sure what a willing GP or hospital doctor is supposed to take from those two paragraphs about people with severe ME/CFS.
Several describe that there have been periods of deterioration along the way, but that the right person at the right time contributed to hope and mental support.
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That looks like an incitement for medical professionals to push through with whatever programme they think is right, regardless of whether their patient is deteriorating.


It also sounds as though the rehabilitationists and GPs will ignore the guideline anyway.

What is the next step? Is there any real hope that feedback might improve the guideline? Even if it was made better, is it likely to influence care?
 
Hutan said:
What is the next step?
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There is a three month feedback period. I’m not sure how the associations intend to respond, and what they will put the most weight on.
Hutan said:
Is there any real hope that feedback might improve the guideline?
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I doubt it. The people involved from the department don’t seem to fully understand what they are doing. They seems to believe that «clinical experience» and «personal anecdotes» have real value when it comes to making recommendations about treatments (anything that’s intended to cause an improvement from the natural course).
Hutan said:
Even if it was made better, is it likely to influence care?
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The statements that use strong language have to be followed by law, but I haven’t gone through the document and actually found them. I suspect everyone will carry on as normal.
 
Midnattsol said:
...advice such as «enjoyable activities are more restorative (than non-enjoyable activities)», «find out what is most important to you», «set goals».
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How long have these "dedicated people" in their highly subsidised specialist clinics been "helping severely ill patients along the way", with mental strategy to discover hidden gratitude, goals and priorities

- hidden because if you ask them some patients say "I don't have any so please help me find my healing goal, my healing gratitude and my healing priority, please help me find out what I enjoy"

- or they say things which this program forbids - like: "I was wonderfully grateful for the medical exemption, income top-up, special diet and oral nutrition support so I can still nurse myself at home and stop crashing - please do not forbid it and take it away to force me onto your program"

I guess the fringe rehab program in question was already trialled for many years already, but had no validating clinical data to collect for the research it now begs for - since patient feedback is not proof either.

And "hope with mental support" was not recovery either. If this is the Department's vanity project it is still too anomalous and not sellable. Also it got stuck in a draft peppered with organised patient representation.

I see no statistics for all the ME/CFS patients it claims it recovered already. It has nothing to offer non-believers. It looks like an ideology

Maybe there is a marketable ME/CFS app coming on (like the one the stroke patients do appreciate). But even so, this "dedicated" life-coaching is not affordable - so its only a niche market.

Midnattsol said:
Of course your helpful health provider will help you find out what is enjoyable, important and would be a good goal to set.
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Harrumpoph I expect Guideline development to backfire on this fringe of rehab, and produce another exclusion (like Britain did with the GET exclusion).

Subsidised ME/CFS life-coaches for elaborate goal-setting might be it.

Which bit of this rehab proposal do Norwegians think is the 1st thing their combined Guidelines need to exclude for ME/CFS patients?

A fringe of rehab invoked academia to obtain subsidy for its glorified life-coaches. Getting people back to health, school, work is good. But it cannot be enforced on a condition like ME/CFS. Everyone knows this.

The time ran out for this ME/CFS rehab program to produce the clinical data for its own claim that it was working - all along - the "way"
 
Utsikt said:
It’s correct in Norwegian, the autotranslation messes it up
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Ah. Thanks.
Midnattsol said:
Then again it’s buried under advice such as «enjoyable activities are more restorative (than non-enjoyable activities)», «find out what is most important to you», «set goals».
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Usual trick, bury it deep and misrepresent the problem and solution anyway.
Midnattsol said:
Of course your helpful health provider will help you find out what is enjoyable, important and would be a good goal to set.
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These arseholes really think we are foolish flakes who just need to taken by a firm guiding hand and treated like moronic wayward 5 year olds.
bicentennial said:
I see no statistics for all the ME/CFS patients it claims it recovered already. It has nothing to offer non-believers. It looks like an ideology
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Indeed, but worse. I regard this stuff now as straight fraud of the worst kind.
bicentennial said:
....to obtain subsidy for its glorified life-coaches.
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There it is.

Plus protect itself from accountability for the last 40 years of failure and abuse of patients.
 
The Norwegian ME Association (TNMA) has published a statement of its first reactions to the guidelines draft. They say there are positive aspects with the new guidelines draft, but that is also has major shortcomings.

TNMA lists problematic aspects:

- Title and criteria
- Focus on fatigue and not the disease where fatigue are among the symptoms
- Under-report of the severity of ME
- the guidelines give misleading impression that prognosis is always positive
- lack of long-term/life-long follow-up
- don't include overlapping conditions
- PEM is not sufficiently emphasised
- No mapping of PEM early in assessment
- individual adaptations completely open for interpretation
- no information on ME and women's health
- not clearly communicated that there is no evidence for CBT and GET
- no references to the survey's that are used
- no emphasis on reviews from NICE or CDC


www.me-foreningen.no

Nye retningslinjer første reaksjon

www.me-foreningen.no www.me-foreningen.no

link to auto translated version:
www-me--foreningen-no.translate.goog

Nye retningslinjer første reaksjon

www-me--foreningen-no.translate.goog www-me--foreningen-no.translate.goog
 
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Kalliope said:
not clearly communicated that there is no evidence for CBT and GET
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They really need to understand and communicate that the data clearly demonstrates that CBT and GET is not effective.

That is different from saying there is a lack of evidence for it. We have clear evidence against it.

I hope they also go after the decision to not assess the quality of the individual studies. Nerli gets a few mentions, even though the data showed that they intervention is ineffective and they had the usual issues with blinding and subjective outcomes.
 
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