News from Scandinavia

[Midnattsol]

It is strange, given the general societal concerns over issues of "health and safety", that there should be such an absence of concern and lack of safety protocols to protect those who seem harmed by treatments. Some might consider it negligent.

EDIT Others might consider it deliberate.

The way everyone is taught that exercise is good for all ailments might have something to do with this.

 

[cassava7]

Article in the Norwegian broadcasting cooperation NRK.

I's about ME sufferer Elisabeth who had been ill for 12 years when she applied for disability benefits. It was rejected and she was told to try CBT, GET and a class in learning and mastery in health. She deteriorated so much from the graded exercise that her physiotherapist chose to stop the treatment. The Labour and Welfare Administration however says she stopped too soon, and might have gotten better if she carried through with the treatment.

Specialist Dag Gundersen Storla has worked with ME patients for 15 years. He confirms that ME patients deteriorate if they do too much. He says there is one study that shows GET/CBT may better the quality of life for some ME patients, but that it doesn't improve the energy level or the ability to work. It may even cause longer time to get well.

A spokesperson from the Labour and Welfare administration says that each case must be viewed individually, and that it's therefore wrong to claim CBT is a systematic approach. He also doesn't know of any medical consensus about CBT making ME patients deteriorate.

A spokesperson from the Norwegian Directorate of Health on the other hand is clear that these treatments may have a negative effect. They treatment should not be systematically applied to this patient group.

NRK: ME-spesialist: Nav har misforstått forskningen
google translation: ME-specialist: The Labour and Welfare Administration has misunderstood the research

The stupidity of the contradiction between these 2 spokesperson really stands out. From the Google translation of the article, bolding mine:

Refers to the Directorate of Health

Acting Performance Director [of Nav / Labour and Welfare Department] Bjørn Lien in Nav writes in an email to NRK that the requirements for Herbro came because she has had a variation in symptoms over the years and that it cannot be ruled out that she will improve with these treatments. Lien also refers to the Directorate of Health of CFS / ME. He also writes that Nav knows of no "medical-professional consensus that cognitive therapy can make ME patients sicker".
[...]
However, Department Director Morten Græsli in the Directorate of Health is clear that these treatments can have a negative effect. He believes it can be unfortunate if ME sufferers are systematically subjected to this treatment.

 

[Kalliope]

Article in the Norwegian broadcasting cooperation NRK.

I's about ME sufferer Elisabeth who had been ill for 12 years when she applied for disability benefits. It was rejected and she was told to try CBT, GET and a class in learning and mastery in health. She deteriorated so much from the graded exercise that her physiotherapist chose to stop the treatment. The Labour and Welfare Administration however says she stopped too soon, and might have gotten better if she carried through with the treatment.

Specialist Dag Gundersen Storla has worked with ME patients for 15 years. He confirms that ME patients deteriorate if they do too much. He says there is one study that shows GET/CBT may better the quality of life for some ME patients, but that it doesn't improve the energy level or the ability to work. It may even cause longer time to get well.

A spokesperson from the Labour and Welfare administration says that each case must be viewed individually, and that it's therefore wrong to claim CBT is a systematic approach. He also doesn't know of any medical consensus about CBT making ME patients deteriorate.

A spokesperson from the Norwegian Directorate of Health on the other hand is clear that these treatments may have a negative effect. They treatment should not be systematically applied to this patient group.

NRK: ME-spesialist: Nav har misforstått forskningen
google translation: ME-specialist: The Labour and Welfare Administration has misunderstood the research

A follow up article in the newspaper Dagsavisen Fremtiden.

Apparently there is a directive in the Labour and Welfare Administration saying all ME patients must undergo rehabilitation, CBT and GET before disability benefits can be granted. An exception may be made with severe/very severe ME.

Former general secretary in the Norwegian ME Association, Anette Gilje says:
The Labour and Welfare Administration is threatening very ill people to push themselves far beyond their limits, just in order to make sure they really are as sick as they claim to be. This leads to fatal and long lasting results with deterioration for ME patients who already have a very low level of functioning.

Dagsavisen Fremtiden: Strenge krav til ME-syke
google translation: Strict requirements for ME patients

 

[Esther12]

A follow up article in the newspaper Dagsavisen Fremtiden.

Apparently there is a directive in the Labour and Welfare Administration saying all ME patients must undergo rehabilitation, CBT and GET before disability benefits can be granted. An exception may be made with severe/very severe ME.

Former general secretary in the Norwegian ME Association, Anette Gilje says:
The Labour and Welfare Administration is threatening very ill people to push themselves far beyond their limits, just in order to make sure they really are as sick as they claim to be. This leads to fatal and long lasting results with deterioration for ME patients who already have a very low level of functioning.

Dagsavisen Fremtiden: Strenge krav til ME-syke
google translation: Strict requirements for ME patients

Even just via google translate, that seemed pretty damning, along with their failure to respond.

Would we be able to get a translation of this image from the article?

 

[rvallee]

Apparently there is a directive in the Labour and Welfare Administration saying all ME patients must undergo rehabilitation, CBT and GET before disability benefits can be granted.

By far the thing I hate the most is how facts don't matter and justifications are made up. No excuse for it, this is plain malfeasance.

From the PACE economics analysis, which somehow supports the IAPT model of rehabilitation by... uh... costing more for worse results:

 

[cassava7]

Even just via google translate, that seemed pretty damning, along with their failure to respond.

Would we be able to get a translation of this image from the article?

From Yandex Translate, slightly corrected:

Submitted: Thursday 7. March 2019 09.49
To:
Topic: Mapping of ME before disability benefits
Attachment: 1. Mapping ME. docx

Hello!

I have spoken to NAY regarding ME patients and disability benefits and have been sent a write that is a summarizing from the Directorate of Health, to and subject managers at NAY. (see attachment)

In general, this applies in disability applications where the person has ME:
The person must have tried:

• Multidisciplinary rehabilitation stay
• Coping strategies (cognitive therapy, coping courses)
• Graduated exercise therapy

Furthermore, it does not apply to severe or very severe degree of ME where there is evidence that the severe degree has been long lasting, everyone with ME must have been in action.
If treatment / exercise has not been attempted, a medical justification for this must be provided by a doctor, but this is a strict assessment.
The degree of ME must be documented.

 

[mango]

Opinion piece "A healthcare scandal"

https://www.vn.se/article/en-vardskandal/

 

[Kalliope]

An annoying opinion piece about ME in a local newspaper. It's written by Gisle Roksund, previous leader of the Norwegian Association for General Practice and a popular and well respected voice.

It doesn't seem that he's very up to date regarding ME (but when did that ever stop anyone to write opinion pieces on the subject?) and he seems highly influenced by the biopsychosocial approach.

I believe he aimed to write a diplomatic text searching for common ground, but ends up accusing patients for not submitting to his preferred explanatory model.

En ulykkelig konflikt
google translation: An unfortunate conflict

 

[Snow Leopard]

An annoying opinion piece about ME in a local newspaper. It's written by Gisle Roksund, previous leader of the Norwegian Association for General Practice and a popular and well respected voice.

It doesn't seem that he's very up to date regarding ME (but when did that ever stop anyone to write opinion pieces on the subject?) and he seems highly influenced by the biopsychosocial approach.

I believe he aimed to write a diplomatic text searching for common ground, but ends up accusing patients for not submitting to his preferred explanatory model.

En ulykkelig konflikt
google translation: An unfortunate conflict

The same old dualism bullshit. Anyone who invokes this argument clearly does not listen to the actual opinion of patients and chooses to mischaracterise our views again and again, sigh.

There is certainly quite a lot we do not yet know about some ME sufferers, their ailments and causes. Maybe there is a group of the sickest who have a condition that we do not yet understand. Well, she can. Therefore, of course, it is important to research further. It is e.g. quite striking and strange that in Norway we have approx. ten times as many with the diagnosis of ME as in our neighboring countries.

Wow, thinly veiled... How do we know the true prevalence when there are no population based epidemiological studies? The most likely explanation for the diagnosis differences is biases in medical practise - I suspect the prevalence is the same, but the medical system certainly is not.

 

[Esther12]

That article is a concise example of the lazy way some people in medicine engage in the controversy around ME. So infuriating. The smug, the smug!

 

[Snowdrop]

The conflation of chronic fatigue and this illness has been effective in creating confusion so profound that it is requiring extraordinary measures to get us out of this twisted lie.

I can well imagine Norway having a higher incidence if the people tasked with measuring include all chronic fatigue and possibly other illnesses such as depression.

It has become very disheartening to watch as medical people who are usually thoughtful and considered in their approach fall prey to and are persuaded by this insidious nonsense.

 

[rvallee]

Opinion piece "A healthcare scandal"

https://www.vn.se/article/en-vardskandal/

Good one. It opens saying there is a scandal in the country, but in truth it is in every country, a global disaster, and it is not many people who are discriminated, but nearly all. Even when you soberly present the basic facts they understate the scale and gravity of just how disastrous the whole thing has been and continues to be.

Otherwise a good account of the broad picture, from someone with personal perspective of being a relative to a pwME.

 

[rvallee]

An annoying opinion piece about ME in a local newspaper. It's written by Gisle Roksund, previous leader of the Norwegian Association for General Practice and a popular and well respected voice.

It doesn't seem that he's very up to date regarding ME (but when did that ever stop anyone to write opinion pieces on the subject?) and he seems highly influenced by the biopsychosocial approach.

I believe he aimed to write a diplomatic text searching for common ground, but ends up accusing patients for not submitting to his preferred explanatory model.

En ulykkelig konflikt
google translation: An unfortunate conflict

Reads a bit... bad opener... clearly misinformed...

Spirit and matter (psyche and soma) are not two separate substances

OK thanks I'm out. Thought-terminating clichés have no place when discussing the lives of millions of disabled people, who are denied basic help and support because of people who value a good philosophical conundrum over literally millions of lives.

Firefighters do not spend hours or days discussing what is the origin of a fire while people are stuck inside. Anyone who brings this stupid "split" is immediately disqualified from the discussion. Very notable that the only people who argue that there isn't such a split are the ones pushing for that split and that nobody but them cares about this imaginary problem.

 

[mango]

Dr Per Julin writes about the differences between ME and stress-induced fatigue/burnout ("utmattningssyndrom", literally "exhaustion syndrome", which is a separate diagnosis in Sweden), in the latest issue of the medical journal Medicinsk Tidskrift:

Nyfiken på Trötthet
https://ki.se/forskning/nyfiken-pa-trotthet

Curious About Fatigue
[...]ME/CFS, formerly called chronic fatigue syndrome, is a disease that in many ways resembles burnout syndrome. This poses a certain risk of uncertain diagnostics, says Per Julin, chief physician at the neurological rehabilitation clinic Stora Sköndal and researcher at the Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.

- There have been several rounds of diagnostic criteria for ME/CFS and some of those who have been diagnosed with older variants, where fatigue was the main criterion, may in fact have had stress-induced fatigue syndrome, burnout. This gives uncertainty about older studies, where it is unclear what diagnosis the included patients actually had. But research becomes better and safer as the right people are included in the studies, says Per Julin.

There are several clear differences between the illnesses. For example, the ME/CFS disease often occurs after an acute infection, such as glandular fever, tick borne infection or influenza.

Another difference is that people with ME/CFS get worse by any kind of exertion. Physical and mental activity can cause flu-like symptoms, some even cause fever. This symptom, called post-exertional malaise, PEM, is central to the disease. This means that all activity can be exhausting, even such as the patient previously experienced as recovering, such as pleasant socializing or a walk. It also means that people with ME/CFS cannot use physical activity as part of their treatment in the same way as patients with stress-induced fatigue syndrome burnout.

- Actually, the typical patient is fairly easy to diagnose. The sad thing is that they are often the most misunderstood, says Per Julin.

He collaborates with researchers at Karolinska Institutet and Uppsala, among others, in search of biomarkers and treatments relevant to ME/CFS. And from a research perspective, Per Julin is hopeful for the future.

- Current research increasingly points to autoimmune mechanisms, inflammation of the nervous system and impact on the cells' energy production capacity. In recent years there have been many new drugs in the fields of cancer and immunology, aimed at specific mechanisms of action in the immune system. I think that if we only get a little further in biomarker research around ME/CFS, so that we can better dial in the mechanisms that are affected, then I think the step may be short for more drug or treatment trials,” says Per Julin.

 

[rvallee]

Dr Per Julin writes about the differences between ME and stress-induced fatigue/burnout ("utmattningssyndrom", literally "exhaustion syndrome", which is a separate diagnosis in Sweden), in the latest issue of the medical journal Medicinsk Tidskrift:

Nyfiken på Trötthet
https://ki.se/forskning/nyfiken-pa-trotthet

This is worth highlighting one time or a few thousand:

Actually, the typical patient is fairly easy to diagnose. The sad thing is that they are often the most misunderstood, says Per Julin.

And at this point it is 99% the fault of the deniers. Early on, sure, difficult, but there is never an excuse for long-term willful ignorance. We see the same dynamic with climate change, even though the science is way more settled, the damage evident and the costs enormous and still, denial runs deep.

Which is why in science it is critical to prevent ideologies from gaining acceptance in the first place, as you then have to fight both the real problem and the new, entirely superfluous, problem whose very goal is to prevent the problem from being solved at all.

 

[mango]

Trigger warning: suicide.

Expressen: Diagnosen förstör Karins liv – Lotte blev helt frisk

https://www.expressen.se/nyheter/krim/diagnosen-forstor-karins-liv-lotte-blev-helt-frisk/

The diagnosis destroys Karin's life - Lotte recovered completely

Karin, 64, has application paper for the death clinic ready.

She suffers from ME: The diagnosis of the parents in Bjärred indicated as a murder motive and which drove Richard Lundgren from Nordingrå to kill his wife.

The disease splits the medical profession - and some patients testify to recovery with controversial methods.

- We are accused of not having "real ME", says Lotte, 35.

Lotte is Norwegian, says that she was cured by the Lightning Process. Article links to and quotes Recovery Norway too, mentions Live Landmark, Crawley's SMILE study, suicide, physician assisted suicide etc. Has short quotes by a Swedish patient organisation representative, an unfortunate quote by Jonas Bergquist ("The problem is not an unwillingness to understand, but that we know so little"), mentions Bragées speculations about neck injuries, etc.

It's one of those articles that, to readers who don't know better, gives the false impression of "showing both sides of a story". Not a recommendation

Behind a paywall.

 

[Sly Saint]

It's one of those articles that, to readers who don't know better, gives the false impression of "showing both sides of a story". Not a recommendation

haven't read it but I don't suppose they mention people comitting suicide after doing LP (?)

 

[Kalliope]

A follow up article in the newspaper Dagsavisen Fremtiden.

Apparently there is a directive in the Labour and Welfare Administration saying all ME patients must undergo rehabilitation, CBT and GET before disability benefits can be granted. An exception may be made with severe/very severe ME.

Former general secretary in the Norwegian ME Association, Anette Gilje says:
The Labour and Welfare Administration is threatening very ill people to push themselves far beyond their limits, just in order to make sure they really are as sick as they claim to be. This leads to fatal and long lasting results with deterioration for ME patients who already have a very low level of functioning.

Dagsavisen Fremtiden: Strenge krav til ME-syke
google translation: Strict requirements for ME patients

Another good followup article.
Two lawyers talk about their experiences with ME patients being forced to undergo unhelpful treatments before they can apply for and receive health benefits.
There seem to be different interpretations of the national guidelines for CFS/ME by the Directorate of Health; concerning whether or not CBT/GET should be considered as documented treatment approaches.

Cesilie Aasen from the Directorate of Health confirms that the guidelines does mention different kinds of assessments and treatments but as as examples only. There are no clear recommendations given from them, as there are no clear evidence for any treatments of this heterogeneous patient group.

Dagsavisen Fremtiden: Advokatens råd: - Ikke få ME!
google translation: Lawyer's advice: - Don't get ME!

 

[Sean]

ME patients being forced to undergo unhelpful treatments before they can apply for and receive health benefits.

The Australian government uses this excuse to deny ME patients eligibility for our increasingly fucked up National Disability Insurance Scheme.

The same government that has recently accepted that ME is a physical disorder.

 

[Esther12]

Another good followup article.
Two lawyers talk about their experiences with ME patients being forced to undergo unhelpful treatments before they can apply for and receive health benefits.
There seem to be different interpretations of the national guidelines for CFS/ME by the Directorate of Health; concerning whether or not CBT/GET should be considered as documented treatment approaches.

Cesilie Aasen from the Directorate of Health confirms that the guidelines does mention different kinds of assessments and treatments but as as examples only. There are no clear recommendations given from them, as there are no clear evidence for any treatments of this heterogeneous patient group.

Dagsavisen Fremtiden: Advokatens råd: - Ikke få ME!
google translation: Lawyer's advice: - Don't get ME!

via google translate:

Chief Executive Officer of Nav Bjørn Lien, via email, denies that Nav requires ME patients to undergo special treatment. He writes that they relate to ME as to other diseases, that each case is treated individually and that Nav adheres to guidelines and recommendations prepared by the Directorate of Health and the National Center for Competence for CFS / ME.

He believes that cognitive therapy is among the few treatment options that may be relevant for this group, and in turn refers to the national supervisor from the Directorate of Health.

- In some cases, cognitive therapy may be a measure that may be appropriate to try out, to see if this can help improve income performance, writes Lien, who attaches the following excerpt from the supervisor:

"Cognitive therapy that has been shown to have particularly good treatment effects in anxiety and depression may be a useful adjunct to medical and multidisciplinary treatment and coping measures also for some patients with CFS / ME. A recent randomized controlled trial suggests that adolescents may have positive effects of cognitive behavioral therapy in terms of both school attendance, degree of fatigue and physical functioning »

The benefits director points out that in order to determine a permanent reduction in earning capacity, all appropriate treatment must be attempted exhaustively. It is sufficient that there is a certain possibility that the treatment will improve the earning capacity.

Lien does not agree that Nav places particularly stringent requirements on ME sufferers in terms of duration.

That Helland again?

Weren't Vogt's Recovery Norge group praising themselves for the great talk they gave to Norway's disability welfare (sorry- I've forgotten the name) department?