News from Scandinavia

[rvallee]

They really seem to think that writing things differently than how they are makes those imaginary things happen and is the same as actually doing something for real. This is insane cult mentality.

 

[Midnattsol]

An account by Trude Schei from the ME Association of a court meeting for a severe pwME applying for disablity but NAV/Norwegian welfare argues against it as they claim most recover and it's all about motivation and other, uh, interesting takes.

Court case regarding disability benefits for severe ME (Google translate)

Some quotes:

She [NAV's consulting physician] talked a lot about “motivation,” and that a lack of faith in treatment would cause it to not work. I took it as meaning that the family and Kolbjørn lacked motivation, which was why he was still sick.

She [Signe Flottorp] also believed that it was important for recovery to read stories on Recovery's pages about people who have recovered, but that the ME Association's user surveys could not be trusted, they were probably manipulated to show the results the association wanted.

She also claimed that "many are recovering."

He [NAVs lawyer] ]said that NAV did not need to deal with the Civil Ombudsman's statement because NAV assumed that all treatment provided by the Norwegian health service was reasonable, and that one could therefore not get sicker from it. PEM was only a few hours of discomfort.

On the plus side, I do look forward to the research Anne Kielland mentioned they had not published on how patients in the NAV system do not become able to have an income/work. Kielland is one of the researchers behind the Tjenesten and MEg project that has its own thread here, where they among other things have used registry data to follow patients in the NAV system and see if they manage to return to work or not.

 

[Liie]

While formally claiming to have separated ME from functional disorders, access to documents shows that the practice is quite the opposite. At one center (Center for Functional Disorders), 41 out of 44 patients with an ME diagnosis have been recoded as functional disorders. Since 2019, four centers have had zero patients registered with an ME diagnosis and have not made the diagnosis themselves.

This sounds remarkably similar to what has been going on at the "ME clinic" in Göteborg in Sweden: https://www.s4me.info/threads/swede...e-to-avoid-the-diagnosis-me.45927/post-674111

I'm not at all surprised if this is not a coincidence. The functionalist lobby in Sweden has expressed admiration for Per Fink and Denmark.

Also related to this thread: https://s4me.info/threads/the-disappearance-of-me-cfs.38068/

 

[SNT Gatchaman]

A brief summary of the ongoing court case about disability benefits for a patient with ME/CFS that has been ill since the age of 4.

An account by Trude Schei from the ME Association of a court meeting for a severe pwME applying for disablity but NAV/Norwegian welfare argues against it as they claim most recover and it's all about motivation and other, uh, interesting takes.

Reddit thread here and worth copying.

NAV (Norways welfare administration) denied claiming ME/CFS is something you can recover from/get better with faith, hope and motivation. Nav’s lawyer yelled at Kolbjørn “are you aware there has been many other patients much worse than you, who have completely recovered? What do you think about that?”

Kolbjørn was helped into court in a wheelchair with a mask over his eyes for severe light sensitivity. He spoke in a low voice the whole time, trying the best he can to use simple short words to describe his day to day life. He explained he is mostly bedbound and that there is nothing he wishes more than to be healthy.

Navs lawyer went to great lengths to insinuate that the low level of functioning was due to the family's focus on activity adaptation, and the family beliefs that ME was a biomedical disease. According to navs lawyer, this is a view shared only by a small, peculiar group, and contrary to "general opinion" who all agrees that it is psychosomatic. There the family did not seek documented effective treatment in the public health system such as GET, CBT, LP etc. Instead the family seeked "alternative" practitioners who treat it as a biomedical illness. Further claiming people who believe in the biomedical model are just waiting for a pill, he claimed, and they are not open to other approaches, or motivated to try. "If they continue as they are now, he will never recover!”

Nav claims he has not gone through these treatments (CBT, GET etc.), which according to them will help him recover - therefore they cannot grant him disability benefits.

 

[Utsikt]

A bit of layman’s context:

Our welfare laws only require us to have tried any treatments or measures that are reasonable/appropriate (hensiktsmessig) in terms of their ability to increase your ability to work.

NAV claim that CBT, GET, LP etc. are effective treatments. They also often claim that patients that have been sick for years have to wait and see if they experience spontaneous recovery.

They obviously have no proof that any treatments work. And their wait and see requirement is not part of the laws.

———

I wonder what is possible in terms of taking legal actions against NAV. They are ignoring previous rulings when assessing new cases, a parliamentary decision that told them to stop discriminating against ME/CFS, and binding instructions from the ombud about not overruling physicians without clear cause.

It’s a witch hunt of pwME/CFS, seemingly given more fuel by the chief physician, Marit Hermansen. For context, she’s the former president of the Norwegian Medical Association, and former leader of the ethics committee of the Worlds Medical Association.

She attended Reme’s secret seminar that lead to the Oslo-manifest, but she didn’t sign it herself.

The only positive is that she’s turning 62 this year so she might not stay in the position for too many more years.