News from Scandinavia

[Ravn]

Don't think this Icelandic conference has been posted?

Beyond the Diagnosis, Understanding Complex Chronic Illness
BRIDGE BETWEEN CONTINENTS

An open international conference will be held on 29. October, bringing together leading Icelandic and international experts in ME, Long COVID, Environmental illness and POTS to share the latest knowledge from research and clinical practice.
[...]
The conference is particularly relevant for doctors, nurses, physiotherapists, occupational therapists, psychologists, social workers and other healthcare professionals who wish to deepen their understanding of these complex and often misunderstood illnesses. It is also important for professionals working within government, municipalities and institutions in the fields of health and social services. The challenges faced by these patient groups will be discussed, along with ways to improve services and support.

Patients, family members and other interested individuals are warmly welcome. For them, the conference offers a unique opportunity to hear from leading international experts, access reliable information and learn about the latest research that is changing our understanding of these illnesses.

Registrations close 20 October. There's a free livestream. No idea if there'll be recordings

Programme and speakers at link. The international line up is the usual crowd and doesn't look to promise anything new. There are also a number of Icelandic names I don't recognise

 

[Kalliope]

The Norwegian broadcaster NRK is following a court case about a nurse who is suing the state because he believes he developed ME due to a vaccine (Astra Zeneca) against Covid.

Over 2500 have applied for compensation for being harmed by covid vaccination, and the results of this trial will be important for the outcome of these other cases as well.

Oct. 4th: Saksøker staten: "Jon" mener han fekk ME av covid-vaksine
google translation Suing the state: "Jon" believes he got ME from the Covid vaccine

Oct. 6th: Lege mener det er sannsynlig at covid-vaksinen kan gi kronisk utmattelse
googel translation Doctor believes it's likely that the Covid vaccine can cause chronic fatigue

 

[Liii]

Good media news from Norway.

Lena Kjempengren-Vold has written an opinion piece in the journal for Norwegian psychologists.

It seems sensible.

She argues against the foundation of the psychosomatic explanations.

Maybe the brain isn't wrong.​

What if the body has actually changed after the infection, and the brain is reacting to that? Then the goal should be to understand what has happened, and what the body is still reacting to, rather than teaching the brain that it is safe.

Therefore, I believe the leap from PRT for some forms of chronic pain to MBRT for post-infectious fatigue deserves far more attention than it receives.

A treatment model cannot simply be transferred from one condition to another because both involve the brain. The brain is involved in all disease.

And a metaphor about a "false alarm" does not become a documented disease mechanism because it is easy to understand, works well on TV, and gives hope that symptoms can be turned off again.

Tar hjernen egentlig feil om utmattelse?

En metafor om en «falsk alarm» blir ikke til en dokumentert sykdomsmekanisme bare fordi den er lett å forstå.

www-psykologtidsskriftet-no.translate.goog

 

[rvallee]

Article about Sweden abandoning people with Long Covid.

Jörgen, 54, har haft postcovid i mer än sex år

54-årige Jörgen Hassler visste att han förr eller senare skulle bli utkastad ur samhällets trygghetssystem. Men när det skedde blev han ändå förvånad.

www.aftonbladet.se

• Jörgen Hassler, who suffers from post-covid, lost his sick leave without a medical examination after being on sick leave for over five years.
• Jörgen is now without compensation and relies on his wife's income and own savings.
• His experience illustrates flaw in the security system. He advises others not to expect long-term protection from society.

Don’t expect society to protect you. It sounds hard, but in my experience, that's exactly how it is.

Oddly enough, this has been one of my main lessons out of this nightmare. I've often heard of stories of rich people whose only regret in their last days is how they neglected the people in their lives, how they should have made less money and spent more time with them instead. But when you get sick people leave you, abandon you, just as society does. I actually regret more not having worked harder to make more money, so that I would be able to protect myself, because we can't rely on other people to save us from something as common as this.

 

[Nightsong]

Don't think this has been posted anywhere:

Working group appointed by the Director of Health in Iceland
Healthcare services for ME/CFS, Post-COVID Syndrome, POTS and environmental illness
Key findings and recommendations
September 2026

https://akureyrarklinikin.is/wp-content/uploads/2026/10/Short-English-version.pdf

 

[Midnattsol]

The recommendation to involve the Nordic Council makes me think of the amount of discussion around the recommendation from the Nordic Council to include "no safe intake level of alcohol" in the new Nordic Nutrition guidelines. If we had the same level of participation in other health debates I think we would be a more health literate society..

 

[Jonathan Edwards]

Working group appointed by the Director of Health in Iceland
Healthcare services for ME/CFS, Post-COVID Syndrome, POTS and environmental illness
Key findings and recommendations
September 2026

Interesting to read. It seems eerily familiar. The general gist is on message - more services needed for ME/CFS. But the emphasis is on beefing up a rehabilitation unit and:

It is proposed that the Clinical Care Guide from Bateman Horne, USA for ME, Long COVID, and related illnesses be used to support the assessment and treatment of patients in Iceland.

That guide was full of inappropriate stuff.

 

[Midnattsol]

Interesting to read. It seems eerily familiar. The general gist is on message - more services needed for ME/CFS. But the emphasis is on beefing up a rehabilitation unit and:

It is proposed that the Clinical Care Guide from Bateman Horne, USA for ME, Long COVID, and related illnesses be used to support the assessment and treatment of patients in Iceland.

That guide was full of inappropriate stuff.

I don't know much about the icelandic ME community, but I've seen many in Norway highlight Bateman as good, and not necessarily able to see the problems.

 

[Kalliope]

Don't think this has been posted anywhere:

Working group appointed by the Director of Health in Iceland
Healthcare services for ME/CFS, Post-COVID Syndrome, POTS and environmental illness
Key findings and recommendations
September 2026

https://akureyrarklinikin.is/wp-content/uploads/2026/10/Short-English-version.pdf

Thank you for posting this. There's a news article also on this in English

• The report says services and insurance protection are inadequate relative to the burden carried by patients.
• It recommends strengthening Akureyri Clinic, formalising cooperation with Landspítali and establishing specialist rehabilitation.
• Other proposals cover home care, research, professional training and social-insurance changes; they are recommendations, not adopted policy.

Iceland Report Calls for Overhaul of ME and Long COVID Care

A new Icelandic report sets out 42 recommendations to improve care, research and social support for people with ME, long COVID and POTS.

www.icelandreview.com

 

[bicentennial]

Don't think this Icelandic conference has been posted?

...
The conference will be held in English

Registrations close 20 October.

The 20th was last Tuesday (grrrr this post was delayed a whole week).

There's a free livestream. No idea if there'll be recordings

"A link will be sent by email shortly before the event".

Programme and speakers at link. The international line up is the usual crowd and doesn't look to promise anything new. There are also a number of Icelandic names I don't recognise

The Speakers

The Program:

Speech at 15:20
What is the current status?
by Freyja Imsland, PhD
- ME patient,
- Vísinda- og fræðslunefnd
- Science and Information Committee of The ME Society of Iceland)
- Committees of The ME Society of Iceland

"Freyja developed ME during her PhD studies, 15 years ago, but in spite of the challenges of living with ME she defended her PhD in genetics from Uppsala University.

"Since then her condition has worsened, and she is no longer able to work. She has dedicated what little energy remains available to her to educate herself on the nuances of patient’s lived experiences, as well as keeping up with developments in ME research.

"Our sincere thanks to the sponsors of Bridge Between Continents for their generous support in making this conference possible."

Sponsors:
- Heilbrigdisraduneytid
- Obri rettindasamtok

I thought ...brigd... could mean "bridge, but it translates as "Health radio news". However, a radio is a bridge.

Obri rettindasamtok translates as "Obri accepted the right"??? No, the machine translator has changed its mind, it now translates as Obri Rights Association.

These generous sponsors might do some more bridging over the oceans between us. This brings me back to a video of gentle singing posted by @MountainRose when @bobbler asked for a bridging inspiration

Spoiler: Youtube video

 

[ahimsa]

Working group appointed by the Director of Health in Iceland
Healthcare services for ME/CFS, Post-COVID Syndrome, POTS and environmental illness
Key findings and recommendations
September 2026

https://akureyrarklinikin.is/wp-content/uploads/2026/10/Short-English-version.pdf

I saw a news article about this report:

"Iceland Report Calls for Overhaul of ME and Long COVID Care"

Iceland Report Calls for Overhaul of ME and Long COVID Care

A new Icelandic report sets out 42 recommendations to improve care, research and social support for people with ME, long COVID and POTS.

www.icelandreview.com

 

[bicentennial]

https://akureyrarklinikin.is/wp-content/uploads/2026/10/Short-English-version.pdf

206 pages

Iceland Report Calls for Overhaul of ME and Long COVID Care

Iceland reports that its available services do not reflect the gravity eg healthcare, social services, universities, insurance and public funding.

Care, Research and Social Support

Report: Services and insurance protection are inadequate to the patients' burden. It requires decisions across several ministries and public institutions to implement these Recommendations.

Recommendations to strengthen Akureyri Clinic, formalise cooperation with Landspítali, establish specialist rehabilitation, and build a research programme with a biobank.

Other Recommendations are for professional training, more home-based health-care, with changes to social insurance and financial support

Working Group Warns Against Dismissing Physical Illness

It was appointed in August 2025, then expanded to include environmental illness. It says these conditions should not be treated as psychological or social problems and calls for care to be based on bio-medical knowledge and patients’ physical limitations.

Iceland Review’s guide to the Icelandic healthcare system explains access to public care.

Sources: working-group report: English summary; full report; Vísir

 

[Liii]

Videos are up from ME/CFS and long COVID conference Oct 2026 from RME and Swedish Covid Association.

The people presenting seem to be mostly the usual suspects.

Konferens 2026

RME och Svenska Covidföreningen arrangerar en konferens i Uppsala 14 oktober om ME/CFS och postcovid. Tema: genetik, immunologi, behandlingsstudier och kliniska erfarenheter från Huddinge sjukhus. Plats: Uppsala universitet.

rme.nu

 

[Liii]

Akureyri Clinic

I like that they are calling it that.

Akureyri disease is my favourite name for ME/CFS.

I think it is a mistake to try to give a descriptive name to a complex condition which is not understood. The whole condition can never fit in one name. It would have been better to name it after a location or a person or something like that. And wouldn't it feel better to be a "person with Akureyri" instead of the silly and misleading "ME/CFS".

 

[Peter T]

I think it is a mistake to try to give a descriptive name to a complex condition which is not understood. The whole condition can never fit in one name. It would have been better to name it after a location or a person or something like that. And wouldn't it feel better to be a "person with Akureyri" instead of the silly and misleading "ME/CFS".

I agree, I think it helps to have a name where people have to ask what is that, rather than a name that people think they understand when in fact they don’t.

 

[rvallee]

 

[Midnattsol]

But I've seen nothing in the news (I haven't checked TV programs). That's not necessarily surprising, but still, it was said that at least the main national news channel would be there. Oh, and a tv program with BPS framing that's being filmed too.. I hope they didn't pester anyone.

 

[Utsikt]

Kamilla frykter for livet etter årelang kamp

Da hun kom til Røysumtunet, ble Kamilla beskrevet som «nærmest døende». Nå kan hun bli sendt hjem igjen.

www.dagsavisen.no

News article covering the case of Kamilla, my summary:

Kamilla was «nearly dying» when she got to Røysumtunet last year. She is still very severe, unable to speak, turn or eat.

The municipality has decided they don’t want to pay for her to stay there anymore, so she’s being forcefully moved back home without adequate support. The mother of another woman with very severe ME/CFS has to help her, and another patient has donated some of her much needed personal assistant hours to get her flat prepared as best as possible.

Her GP describes the help she gets at home as thoroughly inadequate. She was initially promised 70 hrs of assistance, but the municipality changed their mind. All appeals have been denied and she’s left with a large legal bill. She will have to move soon for financial reasons because the person she rented with will move out because of too many different people having to come and go all the time (instead of one or two dedicated assistants).

The national competency service is called out by the Norwegian ME Association for making things even worse for the patients in the more than a decade they’ve existed. The leader of the service, Helland, agree that fee get the help they need, but of course do not specify what she believes is proper help. She als claims they follow both the BPS and the biomed research. Yet this is a quote from their website:

The National Competence Service has a bio-psycho-social understanding of the disease. A view that helps explain the complexity of the disease picture.

They have some tokenistic references to biomed research, but all papers on prognosis are BPS and their section on pacing describes pacing up.

 

[bicentennial]

Using the old model of municipal economy to save a life, showed how it can be done, but then in fear not daring to open the floodgates. This appears mean. Maybe economic models need reasonable adjustment (local, national & global).

The reddit page said tons of people turned up in Norway with national TV and remote attendance by 500 on livestream, 200 in online conference. Altogether I am told that is a lot for a small population. Many happy and weepy thankyous were sent via reddit from across the world.

Some redditeers report that Norway helps people everywhere across the world, just not people with ME/CFS at home. Also it gives more social contact in prison to one lonely, protesting, captured terrorist, more than severe symptoms allow.

 

[Utsikt]

The reddit page said tons of people turned up in Norway with national TV and remote attendance by 500 on livestream, 200 in online conference. Altogether I am told that is a lot for a small population. Many happy and weepy thankyous were sent via reddit from across the world.

If 0.5 % have ME/CFS, that’s 28 000 people. Relative to that, the turnout was great.

Some redditeers report that Norway helps people everywhere across the world, just not people with ME/CFS at home. Also it gives more social contact in prison to one lonely, protesting, captured terrorist, more than severe symptoms allow.

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.

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.