News from Scandinavia

@Rick Sanchez the article says that this is about illnesses we don't yet understand. Is this really the position of the health authorities? If they really see them as of yet unexplained illnesses, they would have to draw up plans to research them. Or is this just empty rhetoric to mislead patients into accepting bad healthcare and/or concealing a psychogenic diagnosis?

 

To “celebrate” the release of the new Danish recommendation, here are several more Danish articles to raise your blood pressure further.

All start out reasonable enough. Patients really are ill. They are not imagining things. They shouldn't be bounced from doctor to doctor. Etc etc - all fair enough.

Start to get worried at this point: Patients need to be viewed holistically. Nothing wrong with holistic as such but this is Per Fink's idea of holistic which translates into: GET and CBT work well for these patients.

Though the patient cited for proof isn't very convincing. Headline: “After 16 years with unexplained pain Louise has found a treatment that works”. In the article it turns out she has learned that “it's ok to be in pain”.

https://videnskab.dk/en/node/23347 (rerun from January 2017)

https://www.dr.dk/nyheder/indland/av-av-av-nu-skal-laeger-goere-noget-ved-skraldespands-diagnoser

https://www.dr.dk/nyheder/indland/region-syd-paa-vej-med-center-til-funktionelle-lidelser

https://www.dr.dk/nyheder/indland/e...r-har-louise-faaet-en-behandling-der-hjaelper

 

ME/CFS: Bragée ME-Center får nytt uppdrag
Nytt avtal med spännande utmaningar till ME-vården i Stockholm
https://www.bragee.se/bragee-me-center-far-nytt-uppdrag

"ME/CFS: Bragée ME-Center gets a new assignment. New contract with exciting challenges for ME healthcare providers in Stockholm"

Google Translate, English

 

According to their website they accept patients from abroad. But I couldn't find anything about what treatments they are offering?

 

No, it doesn't say anything about what kind of treatments...

 

Here's a document that gives formal details about the new contract. [EDITED TO ADD: However, it's not the final version. The final version, which was signed yesterday, might be different.]

https://www.sll.se/globalassets/5.-...falomyelitchronic-fatique-syndrome-mecfs-.pdf

ETA:

ETA: Some more info about the contract here, including how to apply if you're a healthcare provider who would like to start a new ME center:
http://www.vardgivarguiden.se/avtaluppdrag/avtalsinformation/vardval-stockholm/mecfs/

Currently there are two ME centers in Stockholm: Stora Sköndal and Bragée.

Yet again, ETA: Sorry, I mistook the draft version of the contract for the final verson. The document I linked in this post is from last month. The details in the final version might be different. So sorry, my mistake (brainfog).

 

Oh oh.

 

After 2 years of processing, the Norwegian Board of Health Supervision has concluded that off label treatment of ME with Rituximab at the private clinic Kolibri in Sandnes, Norway, is unjustifiable and that the doctor providing the treatment must change his ways.

Not sure what the consequences will be for the doctor, but seems very likely the treatment of ME with Rituximab at this clinic now will come to an end.

Stavanger Aftenblad: "Ditt valg av behandling virker tilfeldig og i liten grad medisinsk begrunnet" (Your choice of treatments seem random and in little degree based on medical reasoning)
Article is paywalled.

 

The Swedish news magazine Fokus with a good and well researched article about ME and the situation in Sweden.

They've interviewed senior doctor Per Julin at the ME ward at Stora Sköndal, write about how it is difficult to get financial support in Sweden with an ME diagnosis, mentions late Anne Örtegren's fight for the ME cause, the IOM-report, a bit of history, and professor Jonas Blomberg talks about recent research.

Fokus: Hopplös diagnos
google translation: Hopeless diagnosis

 

The Danish newspaper Politiken has an article today about protests from different patient organisations (including the Danish ME Association) against the term functional disorder and the new recommendations from the health authorities.
Politiken: Patienter med uforklarlige og uhelbredelige smerter frygter nye puslespilsdiagnoser
google translation: Patients with inexplicable and incurable pain fear new jigsaw diagnoses

But the health authorities doesn't seem keen on taking the patients protests into consideration:
"Common to the functional disorders is that the causes are not mapped and that both biological, psychological and social conditions can play a role in the development and worsening of the disorders. Therefore, we recommend that functional disorders be seen, understood and treated by a bio-psycho-social approach, with focus on both mental, physical and social factors. A purely physical focus will entail the risk of overlooking important aspects of the disorders, "says Astrid Nørgaard from the National Board of Health.

 

After several great articles in Norway lately in connection to 12th of May and a great ME documentary on national television, it is time for someone trying to set the record straight again. Here is Lightning Process coach Live Landmark with a letter to the editor on how ME patients deserve documented treatments. The argumentation is so twisted it makes me dizzy, but I guess there are still people who'll find this sensible.

ME-pasienter fortjener dokumentert behandling
ME patients deserve documented treatment

The argument is that ME patients get sicker by cognitive therapy and gradual exercise . However, the argument lacks scientific evidence and is therefore just an assertion.That does not mean that I do not know that there are people who are disappointed and tired when one does not have an effect of either treatment, but it is important to be able to distinguish claims about disease deterioration from solid scientific documentation.

 

This reminds me of guidelines about how to tell patients that they have a psychosomatic/psychological disorder: Tell them you take them seriously, that their symptoms aren't imagined. Then explain them what's going on ("Feelings and thoughts can have a substantial impact on your body" blah blah) and what they can do to help themselves.

Sounds like a sale talk; pure manipulation.

 

An update on the ongoing ME debate in the local newspaper Stavanger Aftenblad after several articles about the off label Rituximab treatment of ME in the region.

ME patient Nina E. Steinkopf started with a letter to the editor called:
Er Dagfinn Øgreid en grådig, kynisk lege som skader pasientene sine?
google translation: Is Dagfinn Øgreid a greedy, cynical doctor who is harming his patients?

This was followed by the letter to the editor by LP-coach Live Landmark (links are on top of this post)

Then professor emeritus Ulrik Fredrik Malt, a psychiatrist with psychosomatic medicine as his field (and known for a biopsychosomatic approach to ME) enters the debate with:
Uenighet i sak må ikke bli til angrep på andres personlige integritet
google translation: Disagreement in a matter must not turn into a violation of others' integrity

And the latest addition is from another ME patient
Benedikte Monrad-Krohn: ME: Rett behandling til rett pasient
google translation: ME: Correct treatments to the correct patients

 

The Danish newspaper Politiken has asked readers to send in questions to the health authorities regarding the new decision they've made transforming several diagnoses (also ME) into "functional disorder" with GET, cognitive behavioural therapy, anti depressants etc as treatments.

The health authorities have answered and the newspaper has shared questions and answers in these two parts. Quite a few of the questions were concerning ME.

Sundhedsstyrelsen svarer Politikens læsere, del 1
google translation: The National Board of Health responds to the readers of Politiken, part 1

Sundhedsstyrelsen svarer Politikens læsere, del 2
google translation: The National Board of Health responds to the readers of Politiken, part 2

Here are five of the questions and their answers:

How can Søren Brostrøm, Director of the National Board of Health, say that WHO's distinction between psychology and somatics is irrelevant?
"In society there is a deep distinction between bodily (somatic) and mental (mental) disorders. But that understanding is very unupported. In most diseases and conditions, a sharp distinction between body and psyche is not meaningful, because body and soul are connected. The interaction between body, psyche, society and culture in relieving, sustaining and healing disease is complex, and it also applies to functional disorders.

Therefore, we also recommend that functional disorders are seen, understood and treated by a so-called bio-psycho-social approach, with focus on both mental, physical and social factors. "

At the end of 2011, Søren Brostrøm said that "... Denmark is following WHO when it comes to lists of diseases." This disease list includes Chronic Fatigue Syndrome / ME (G93.3) and Fibromyalgia (M79.7). But Søren Brostrøm would prefer to have his own terms such as 'chronic fatigue' instead of ME.
He also believes that patients should instead receive a functional disorder diagnosis that is not on the WHO disease list.
What has changed since you no longer follow your disease list?
"Diagnosis is primarily a tool for health communication, documentation and research. In Denmark, we usually use the diagnostic codes, as stated in the WHO diagnostic system, the so-called ICD-10. But there are exceptions, both additions and deviations that are relevant in a Danish context. This applies, for example, to the code of transcendence in the psychiatric chapter of ICD-10, which you no longer use in Denmark.

We are investigating whether it is possible to introduce a neutral and non-stigmatizing code for functional disorders as we believe that this may contribute to better handling of functional disorders for the benefit of patients. However, you will still be able to use the ICD-10 diagnoses. "

»ME / CFS may get worse after people with the disease try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM) «.
How the heck can the National Board of Health then stand up to treat chronic fatigue syndrome / ME patients with just graduated exercise when CDC directly warns against it?
"There is a big difference between graduated training targeted people with chronic fatigue syndrome, and the National Board of Health's general recommendations for physical activity. We do not recommend that people with chronic fatigue syndrome should exercise according to the general recommendations for physical activity, but on the other hand, the training should be adapted to the individual.

People who are disabled by chronic fatigue syndrome are very ill, not just going to the fitness center. They need an interdisciplinary group of doctors and therapists to investigate them as quickly as possible. And they must be offered research-based treatment based on an individual overall view that takes into account, among other things, the individual's needs, resources and wishes for the content of physical training. And of course in dialogue - treatment is always an offer you talk to with your doctor.

CDC does not require graduated training, but points out that it is possible to use graduated training adapted to the individual patient with chronic fatigue syndrome.

The National Board of Health maintains that graduated exercise is beneficial for chronic fatigue syndrome / ME patients and refers to research studies strongly criticized by researchers around the world.Among other things, the PACE study, which changed the criteria for 'healing' in the middle of the study, and where some patients who got worse from treatment were declared fast. In addition, no one with heavy ME participated in the studies.
How does the National Board of Health relate to the dubious evidence of its motion recommendation to patients with ME?
"We have undergone the evidence-based basis for physical training for Chronic Fatigue Syndrome and thus also the PACE study, which has been exposed to criticism, a criticism to which the researchers in the study relate.

There are scientific studies showing that physical exercise has a positive effect in people with chronic fatigue syndrome, but it does not have a healing effect.

The reason that one should train is that it can prevent a decrease in physical ability and thus further fatigue. Work can be done with all forms of physical exercise, starting with caution. The training should be based on the patient's condition, needs, resources and wishes, and it should be followed by guidance and support in the situations where it is needed.

It is important that we offer this opportunity to patients, possibly together with other treatment options.

We also hear that some patients experience a deterioration in fatigue after training and that they can not just train like everyone else - so it must be an individual offer of a customized form of exercise.

Chronic fatigue syndrome covers a variety of conditions, and it is important that all treatment offered by the patient is individually adjusted. "

I appeal to the National Board of Health to take the criticism of a health system that works far from working optimally seriously. In order for me and other chronic fatigue syndrome / ME patients to be treated, it is highly important from the political side to make a national treatment strategy based on chronic fatigue syndrome / ME as a physical - NOT functional disorder - why do not you?
"We recognize that we are not doing well in health care today for people with functional disorders. And we agree that the healthcare system is not organized optimally when it comes to offering people with functional disorders the help they need. It was in the light of the recognition that we set up a working group in which both regions, professionals and municipalities participated in order to make recommendations for how we can better organize health care services to ensure better people with functional disorders.

We recommend that people with functional disorders, including chronic fatigue syndrome, be treated with a bio-psycho-social approach, with focus on both mental, physical and social factors.

It is our clear perception that all people with functional disorders - including people with symptoms that can be categorized as chronic fatigue syndrome - can benefit from our recommendations. One of our recommendations is that the specialized teams must work research-based and be research-active.

This will allow for studies of different treatment strategies in people with functional disorders - including people with chronic fatigue syndrome. This will help us to know what treatments are effective. "

 

The Danish Health Authority is officially crazy...

I'm so angry

It's actually so insane to see The Danish Health Authority support this functional disorder nonsense.

This bit is particularly bizarre.

So we are to understand that the Danish Health Authority is working on getting the 'functional disorder' diagnosis approved by WHO?

 

It is completely and utterly surreal. We struggle here too, but my heart goes out to the Danish patients.

 

Politiken has an article about a Danish ambassador son with ME. Even with access to resources and the best doctors, he is left with no help from the health care system

Politiken: Carl-Johan lider av kronisk træthedssyndrom: "Jeg er ikke træt - jeg er som en mobil med defekte batterier uden strøm"
google translation: Carl-Johan suffers from chronic fatigue syndrome: "I am not tired, I'm like a mobile phone with defective batteries without power"

Many of the doctors I have met have trivialized how sick I am. Yes, the hell can all be tired and have a little bad. But when I lay in my bed the day long and do not have the power to crawl out of it, you are seriously ill. If only there was evidence of how bad I got it, "he says.
...
"When my blood tests and tests came back negative, I was told that I should eat less liver paste. It was a struggle to get a medical certificate when I was ill for a jura exam. My doctor simply meant I was malingering, "he says.

 

Me too.

We need to work internationally. We need to combine.

 

You can count me in!

 

This morning I received an email notification of the upcoming publication of a Danish book with the very suspicious title : “Rehabiliteringspsykologi” (edited book, long list of contributors unknown to me).

https://unipress.dk/udgivelser/r/rehabiliteringspsykologi/

There is no way to preview the book to see whether the focus is on supportive or directive rehab therapies. Intrigued by the “use of animals”. Will Danes with chronic illness get doggy visits? Or will they be told to get a dog and take it for a walk (new version of GET)?
Anyway, book description from the website (Google translated):

There was one comment (Google-translated) below the book description. The comment writer clearly is highly allergic to the “functional illness” approach in Denmark.