News from Scandinavia

Dolphin said:
There is now an official version in English which may increase the impact it has:

Perspectives

Give patients their lives back​

Norwegian
Silje Endresen Reme, Live Landmark, Tarjei Asprusten, Christer Suvatne, Linn Breen Herner, Elin Drivenes, Ella Roksund Carlsson, Jonas Sharma-Bakkevig, Andreas Saxlund Pahle, Tomas Nordheim Alme, Trygve Skonnord, Randi Brendbekken, Dan-Mikael Ellingsen, Siv Elin Pignatiello, Hege Fundingsrud Novak, Hans Petter Fundingsrud, Trygve Fredrik Moe, Lene Aasdahl, Miriam Skjerven Gjærum, Vegard Bruun Bratholm Wyller, Hedda Bratholm Wyller, Nina Andresen Vinneng, Gisle Roksund, Turid Birgitte Boye, Ida Marie Laberg Aasli, Elias Myrstad Brodwall, Kjetil André Børhaug, Jonas Carsten Jeppesen, Tom Farmen Nerli, Jon Håvard Loge, Hilde Schei, Cathrine Abrahamsen, Reidar Hjermann, Ulrik Malt, Signe Agnes Flottorp, Henrik Vogt, Georg Espolin Johnson, Gunvor Launes, Anne Gunn Dahl Kirkebak, Else Rekstad, Reidar Due, Tone Skjerven, Henrik Børsting Jacobsen, Ingjerd Helene Jøssang, Anne Brækhus, Kathrine Bakke-Friedland, Geir Frivold, Ingrid Bugge, Ingrid B. Helland, Martin Skagseth, Bård Fossli Jensen, Lina Linnestad, Mathilde Myklebust, Hege Kristiansen, Charlotte Lunde, Felicia Skjerven Kristiansen, Hojjat Daniali, Torgeir Hoff Skavøy, Ståle Onsgård Sagabråten, Peter Solvoll Lyby, Marte Roa Syversen, Ingvild Gardum Damskog, Maria Pedersen
We have enough knowledge to help many more patients with persistent symptoms. Nevertheless, we are reluctant to offer hope out of fear of disappointing them. This can have a profound impact on many aspects of their life.

This article is a joint call to action from 63 researchers, clinicians and other healthcare professionals throughout Norway. We have clinical and research experience in persistent physical symptoms, including pain, fatigue, ‘brain fog’, dizziness and gastrointestinal symptoms, and have united around a shared message: new knowledge about how these symptoms develop and persist gives us much greater reason to hope for improvement than is currently conveyed to many patients.

Continues at:

tidsskriftet.no

Give patients their lives back

02.09.2026: Perspectives - We have enough knowledge to help many more patients with persistent symptoms.
tidsskriftet.no tidsskriftet.no

People can comment online on it. There are 10 comments in Norwegian there already.

FYI @dave30th
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This has gotten a new reply, as a new opinion piece. By people closely involved with the authors of the first piece. Claiming to add some more meat to the bone of the predictive coding mechanism by adding more holistic psychosocial views, so I guess predictive coding is too much bio by itself.

Humans are more than mechanisms

Consider a patient with chronic pain who has gradually stopped being physically active, participating socially, and going to work because it has previously worsened pain. Predictive processing can help explain how past experiences—from illness and injury to psychological and social stress—shape expectations of and interpretations of bodily signals.

But why these particular situations have become associated with danger, and what the symptoms mean for the patient, cannot be answered by studying neurobiological mechanisms alone. These are questions that a biopsychosocial case formulation, developed together with the patient and possibly other important people in the person's life, is better suited to answer (13) . The case formulation can contribute to a shared and comprehensive understanding of the patient's suffering and promote meaning, coherence and insight. At the same time, it can highlight factors that maintain the suffering. Predictive processing can be part of such a framework of understanding, but is not sufficient on its own.
...

Although the formulations can be understood as simplified descriptions of neurobiological processes, they have a downside: They can reduce the person's experiences, meaning-making, and possibilities for change to something that primarily takes place in the brain. This is not unique to predictive processing, but is a consistent feature of the popularization of neuroscientific explanatory models (3) .

When the common language mainly emphasizes neurobiological mechanisms, it becomes more difficult for the patient to understand and communicate how life experiences and life situations are related to the symptoms
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As usual an example that doesn't open up for the model being wrong, and ignoring how the people that use this model ignore the patients' life experiences.
 
Midnattsol said:
Humans are more than mechanisms
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It’s convenient that they open by demonstrating that this is about religious beliefs about humans having souls, not science.

They also demonstrate a lack of understanding of basic metaphysics.
In clinical practice and professional communication, it is useful to distinguish between three levels: a functional and behavioral level (actions and interactions with others), a psychological level (experiences, feelings, thoughts and meaning) and a biological level (mechanisms in the body) (3, 10, 11) . For example, a pain experience can be described as activity in the nervous system, as a subjective experience of threat and as behavior in interactions with others. If the understanding is reduced to one level, the picture becomes incomplete.
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Pain is not «activity» in the CNS, it’s when an experiencing unit receives input that it recognises as pain.

An unit might also receive input that it recognises as «this is threatening», but those are either separate experiences, or one unit receives an input that represents «this is painful and it’s threatening».

Importantly, all of those events happen at the same level.

How pain would be defined as behaviour in interaction with others, is beyond me.
 
Utsikt said:
It’s convenient that they open by demonstrating that this is about religious beliefs about humans having souls, not science.

They also demonstrate a lack of understanding of basic metaphysics.

Pain is not «activity» in the CNS, it’s when an experiencing unit receives input that it recognises as pain.

An unit might also receive input that it recognises as «this is threatening», but those are either separate experiences, or one unit receives an input that represents «this is painful and it’s threatening».

Importantly, all of those events happen at the same level.

How pain would be defined as behaviour in interaction with others, is beyond me.
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Obviously you're lacking the proper holistic biopsychosocial mindset.
 
Utsikt said:
If 0.5 % have ME/CFS, that’s 28 000 people. Relative to that, the turnout was great.
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The Reddit poster who started the thread got that right then.

Utsikt said:
Anders Behring Breivik is not allowed to see regular civilians or other prisoners. Prisoners in Norway are not infrequently subjected to human rights violations, including excessive solitary confinement of minors.
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It was another poster who observed that they themselves were more isolated by ME/CFS than the worst prisoner they had news of. Crying out for a standardised model of service (welfare, domestic, nursing, clinic, research)

Whether punitive or expedient, solitary confinement in prisons sounds cruel and inhuman. It is known to break the mind. So it must make a big difference knowing there is someone still nursing you (depending on who that is).

I think UK contracts applied isolation in some obscured residential hospital(s) for adults so severely handicapped they could not be categorically released for 'care in the community' since the NHS sold off its long-term hospital estate. A commercial hospital in Norfolk closed after deaths. The Report was shocked.

Utsikt said:
In a Norwegian context, I think it’s more fruitful to compare the care ME/CFS get to the care of those with cancer, MS, Parkinson or Huntington.
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Ah, yes, Huntingdon's. I read something somewhere about a comprehensive Nordic system of Homes for Huntingdon's. It came up when discussing where to go when unable to stay put at home. Can someone find that S4ME thread?

I think the comparison advised is a good lead to follow.
 
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Where the science leads
- to compare with a germinal ME/CFS approach:

Aside from an unproductive tradition researching scatter-gun theses, there is this germinal stage of preliminary research and development, but at this stage much of the ME/CFS research and clinic network is still missing (apparently displaced in Norway by around 60 clinicians propagating a weird model of their own internal and external interfaces, which they cannot comprehensively list).

There is considerable international convergence upon the classic notion that research into treatment is best derived from prior research into the illness, which is already being called a disease - maybe prematurely, but it was signified by preliminary indications of abnormal pathology. Upon which spun so much speculation it took flight without further grounds, turning into an ideology.

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This is where the science led clinical research into Huntingdon's disease:

Huntington's disease and neurodegenerative genomics [Pihlstrøm]
Department of Neurology, Clinical Neuroscience, Oslo University Hospital

Research projects and clinical studies

Pihlstrom leads this investigation, funded by:
- South-Eastern Norway Regional Health Authority
- Norwegian Health Association
- Dam Foundation
- Fox Foundation
- also linked to the global Parkinson's network
 
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A simulated Case Study (to compare):

https://www.physio-pedia.com/Huntington's_Disease_Case_Study

Obviously there are differences and similarities. IF the basal ganglia are involved in both conditions, that might explain some similarity. VanElzakker might clarify this one day. A lot could be compared. I wondered if anything like this is provided by the ME/CFS "rehab" therapists. It has elements I could use.

The evidentially recommended methods of therapy assessment (Huntingdon's) could have a use for me, but I'd need catching on a day when nerve and muscle fluency is staggered and movement is markedly slowed, silently creaky. Otherwise some of the testing would need to be prolonged or repeated to show problems.

These Huntingdon's therapy assessments are used to assess progress and - in its early stages - its good when therapy is barely effective because it means deterioration is not set in.

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The 4 therapy assessments recommended for Huntingdon's (to compare):

https://www.physio-pedia.com/Berg_Balance_Scale

https://www.physio-pedia.com/Timed_Up_and_Go_Test_(TUG)

In this simulated case study, the initial assessment methods are repeated to scale progress - if any - at the 6 month outcome and consider discharge

Physiotherapy is maintained for maintenance, In cerebral palsy such maintenance is crucial over the years but our NHS is shy of it.

I think the next initial assessments are not repeated for the outcome snapshot:

https://www.physio-pedia.com/Montreal_Cognitive_Assessment_(MoCA)

https://www.sralab.org/rehabilitation-measures/unified-huntingtons-disease-rating-scale-uhdrs-tm
 
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Midnattsol said:
As usual an example that doesn't open up for the model being wrong, and ignoring how the people that use this model ignore the patients' life experiences.
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And just clueless nonsense. Their obsession with this having anything to do with fear, or "danger", is so damn weird and fraudulent, they are just making shit up. Our entire behavior completely debunks this and they can't not see it, they just choose to pretend otherwise. They even talk about the normal chain of events as absurd, as past behavior leading to pain/consequences and how it should be ignored, when it's the whole damn point, but also they are completely reductive in making this simply about pain, because they never factor in how it makes everything in daily living more difficult. These people are so damn clueless.

There is not a single basis for this, no matter how much they want to make their shiny new predictive processing toy sound plausible.
 
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bicentennial said:
Ah, yes, Huntingdon's. I read something somewhere about a comprehensive Nordic system of Homes for Huntingdon's. It came up when discussing where to go when unable to stay put at home. Can someone find that S4ME thread?
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That’s very likely from me. It’s just Norway, but the other countries might have their own systems.

There are dedicated nursing home slots for people with HD, two specialised clinics that offer regular three weeks stays for e.g. monitoring of progression and identifying new needs, and a lot of groups working together to ensure they get the best care possible. There’s still room for improvement in certain areas, especially related to general benefits and rights, but if people with ME/CFS had their current level of care I would be mostly happy.

For reference, there are 3-400 people with active Huntington’s in Norway, and 40-50 dedicated spots for HD throughout Norway. Patients are actively encouraged by the HCPs to move there sooner rather than later in the more advanced stages. Info in Norwegian.

Similar proportions for us would cover all of the very severe and a few more.
 
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