General thread on functional disorders in Denmark

[Snowdrop]

from the google translation of 'Endocrinologists . . .'

Despite several inquiries, no one has been able to tell neither the patient association nor the endocrinologists who made the decision that the pool (the five million kroner) should be linked to the Center for Functional Disorders.

I think I might make a good guess at who orchestrated this.

 

[Kalliope]

Ugeavisen: ME-centre placeres ved årskiftet
google translation: ME centers will be located by new year

The National Board of Health expects that around the New Year it will be clarified which regions will have the new highly specialized centers for the treatment of patients with functional disorders such as ME.

 

[Kalliope]

Psychologist Peter la Cour who used to work as a leader of a Knowledge center for functional disorders in Denmark, critisises the Danish Health Authority for not following up the Danish parliament's decision to remove ME from the list over functional disorders.

Ugeavisen Esbjerg Sundhedspsykolog siger fra: Jeg forstår ikke, at der ikke er røget hoveder
google translation: Health psychologist reacts: I don't understand how no heads have been rolling

- These doctors are wrong about what is actually medical knowledge and what are medical views. The National Board of Health and Søren Brostrøm have all along been allied with the internationally controversial views presented in Aahus by Per Fink. Søren Brostrøm and the National Board of Health have felt very convinced of the wisdom of their own opinions and completely rejected the professionalism and arguments of others. They have stuck to what I would call their own fixed ideas, which they may even believe are more true than others. But they are advancing with the view that they represent medical science as such. They do not. There is no medical agreement, not even in Denmark, so it is not actually medical science that they represent, but rather one among many medical views. As in all such matters, health policy must be governed by democracy and not by medical lobbies, as has happened here. As mentioned with Denmark as an unfortunate international loner in the field, says Peter la Cour.

 

[Kalliope]

Last year, the Danish Parliament unanimously decided to remove ME from "functional disorders" and that it should be regarded as a physiological disease in line with WHO. Not much has happened since, but now the medical journal Sundhedspolitisk Tidsskrift writes that regional centers for the most severe ME patients are one their way where the patients will be receiving "interdisciplinary treatment".

These centers will still be in under "functional disorders" even if ME organisationally will fall under somatic definition and not psychiatric. "The reason for this is that ME and functional disorders are generally best understood from a bio-psycho-social perception and not as a psychiatric diagnosis".

The article further describes the disagreement regarding ME as patients on the one hand who believe that the disease has purely physical causes, and on the other hand professionals who believe the disease is multifactorial and that both biological, psychological and social factors can play a role.

The article also mentions the NICE draft guideline having removed CBT/GET as treatment approaches. Chief consultant Mikkel Bruun comments: "For the time being, this is only a draft, which in some areas differs markedly from previous guidelines - but they are not yet finished guidelines".

Sundhedspolitisk Tidsskrift: Sundhedsstyrelsen: regionale centre til behandling af ME på vej
google translation: The National Board of Health: Regional centers for the treatment of ME on the way

ETA: It seems that in the Danish democratic system, doctors stand above the Parliament.

 

[Kalliope]

Article from Nina E. Steinkopf about collaboration between psychiatry and the insurance industry - and how a Danish insurance company has allocated enormous amounts of money in order to establish the term "functional disorders".

I knew it was bad, but not this bad :-(

Nina E. Steinkopf: ME, the insurance industry and psychiatry

Quote:
Insurance companies that have financial advantage of having ME defined as a psychosomatic disorder connect with health professionals and researchers with exactly this understanding of the disease. In addition, these companies fund research that can be used as an argument to reject claims for compensation. Here, a Nordic network with links to the insurance industry is revealed.

 

[Sean]

Follow the money.

 

[Hutan]

That's a fantastically detailed and interesting blog, with lots of links to support statements.

Recovery Norway (RN) was established in connection with the Norwegian Consumer Agency’s tightening the regulations for marketing alternative treatment. The restriction lead to that alternative practitioners are no longer allowed to use customers’ positive experiences in marketing. RN mainly conveys stories of personal, positive experiences with the alternative method Lightning Process (LP). The organization was startedby i.a. a number of LP instructors and their family members. They have a financial interest in the organization’s lobbying and marketing. LP is mainly marketed towards ME. RN consistently refers to ME as psychosomatic or MUPS: medically unexplained physical symptoms.

 

[Kalliope]

That's a fantastically detailed and interesting blog, with lots of links to support statements.

Fully agree! And great timing as well.

2 years ago the Danish Parliament ruled unanimously that Denmark must follow WHO's classification of ME as a neurological disease. This week there was a hearing where the Danish minister of Health had to answer for why absolutely nothing has happened since that decision was made. I didn't watch the whole thing, so don't have the details, but apparently it was a sad affair and he actually had quoted Per Fink when describing ME as a functional illness. I'm sure there'll be a write up soon with more details from someone who watched it.

 

[Sean]

Only us peasants have to obey the law. It is optional for our overlords.

 

[Kalliope]

2 years ago the Danish Parliament ruled unanimously that Denmark must follow WHO's classification of ME as a neurological disease. This week there was a hearing where the Danish minister of Health had to answer for why absolutely nothing has happened since that decision was made. I didn't watch the whole thing, so don't have the details, but apparently it was a sad affair and he actually had quoted Per Fink when describing ME as a functional illness. I'm sure there'll be a write up soon with more details from someone who watched it.

A local newspaper has two articles today about what happened. If I have understood it correctly, ME has been removed from functional disorders formally, but not in practice. The diagnostic code now is DG933A, which is according to WHO. But there seems to be a misunderstanding here from both the Minister of Health and the opposition of what the added "D" means. They say it means it's a "neutral" code, but "D" seems to simply mean Denmark and is put in front of all diagnostic codes in the country according to dr. Mehlsen in the second article. The Danish Health Authority had informed the Minister of Health on beforehand, but there seems to have been wrong information provided, for instance that GET and CBT which is their recommendation for treatment of ME, also were the most used ME treatments in Sweden.


Ugeavisen: Folketingspolitiker etter samråd: Jeg ved ikke, om jeg skal tude, grine eller bare tænke, kæft det er langt ude
google translation: Parliamentary politician after meeting: I don't know whether to cry, laugh or just think my god, this is far out

Quote (Google translated. Liselot Blix is a politician from the opposition)

She believes that the consultations with Magnus Heunicke about the ME situation are gradually taking on a tinge of amateur theater.

- But it is difficult when you can not get clear answers. Now we have to wait for new guidelines and a thesis plan to come in a few weeks, and if it is not satisfactory, this must end in us expressing distrust of the minister, it sounds from Blixt, before she puts a trump card on:

- So try to listen here. The National Board of Health says the decision has been implemented and the disease removed from functional disorders, after which the agency issues a report which runs under functional disorders. It's tragicomic, and I do not know if I should shout, laugh or just think, shut up, it's far. It's wild, you want to be that familiar. That is also why I say that I would have more respect for the Minister if he said that it was something that was decided under another government, but now I am a Minister, so now we do this, says Liselott Blixt and adds:

- But to sit and say, they implement that decision and then do not, well then I lose respect. It's like giving matador money instead of real money and then saying it can be used. We want us in Denmark to use the WHO code, which is worldwide on the diagnostic list, but instead the National Board of Health makes a new neutral code that is somewhat similar to it, but is not the same, and which no other country uses. It's all for laughs.

The second article is not possible to google translate, but here's a link for those who can read Danish:
Ugeavisen: ME-sagen: Minister vil se efter penge til forskning

 

[mango]

there seems to have been wrong information provided, for instance that GET and CBT which is their recommendation for treatment of ME, also were the most used ME treatments in Sweden.

Here's a post with some more info and a letter dr Per Julin from Stora Sköndal's ME/CFS clinic in Sweden wrote in order to clear up the "misunderstanding" about the approach to ME in Sweden:

MillionsMissing Denmark writes on their Facebook page that Dr Per Julin, who is the head of Stora Sköndal's ME clinic in Sweden, was invited to an online meeting 4 March 2021 with the Danish parliament's healthcare committee (or sub-committee? "Folketinget's Sundhedsudvalg"), to talk about ME.

Julin has now also sent the Danish Health Authority a letter:
https://me-foreningen.dk/wp-content/uploads/2021/04/NyRapport-Per-Julin-kopi.pdf



Some background info here:

 

[Kalliope]

Sundhedspolitisk tidsskrift: Blixt truer Heunicke med mistillidsvotum i sagen om sygdommen ME
google translation: Blixt threatens Heunicke with a vote of no confidence in the case of the disease ME

Quote:
The Danish Parliament's decision from 2019 (V82) to change doctors' diagnosis and treatment of myalgic encephalopathy (ME), among other things by removing the disease from of the Danish Health and Medicines Authority's guidelines for functional disorders, has not created political calm about the disease.
The adoption has not been implemented, and Liselott Blixt (DF) now threatens Health Minister Magnus Heunicke (Soc.) with a no-confidence motion, and the minister conversely warns politicians against remote control of a medical field such as ME.

 

[rvallee]

Sundhedspolitisk tidsskrift: Blixt truer Heunicke med mistillidsvotum i sagen om sygdommen ME
google translation: Blixt threatens Heunicke with a vote of no confidence in the case of the disease ME

Quote:
The Danish Parliament's decision from 2019 (V82) to change doctors' diagnosis and treatment of myalgic encephalopathy (ME), among other things by removing the disease from of the Danish Health and Medicines Authority's guidelines for functional disorders, has not created political calm about the disease.
The adoption has not been implemented, and Liselott Blixt (DF) now threatens Health Minister Magnus Heunicke (Soc.) with a no-confidence motion, and the minister conversely warns politicians against remote control of a medical field such as ME.

I mean what else is there to do but for politicians to force reality when medical professionals stubbornly refuse to comply with it because they prefer their fairy tales? There is a process for this and it is not supposed to allow arbitrary stuff like this.

Seriously what are they supposed to do? Science is supposed to follow the evidence and medicine is supposed to be based on science. Their feelings and preferences are not supposed to factor in. And yet they clearly do, some politicize the whole thing so politicians have to force them to do their job in the way of complying with the evidence and reality.

Once more, health is too important to be left in the hands of physicians. They have one very important perspective on the issue but it is far too limited to be unilateral and unlimited, especially when they act capriciously like here. This is what happens when there is no accountability.

I doubt the motion would pass because most rational people would assume medical professionals have reasons for what they do. But this is exactly how trust is lost, and it compounds with other failures. Experts are not always 100% right but they should never be 100% wrong. Here it clearly is the case. Absolute madness.

 

[Anders_Vang]

Fully agree! And great timing as well.

2 years ago the Danish Parliament ruled unanimously that Denmark must follow WHO's classification of ME as a neurological disease. This week there was a hearing where the Danish minister of Health had to answer for why absolutely nothing has happened since that decision was made. I didn't watch the whole thing, so don't have the details, but apparently it was a sad affair and he actually had quoted Per Fink when describing ME as a functional illness. I'm sure there'll be a write up soon with more details from someone who watched it.

Hi all, Danish newcomer to the forum here, just came across this thread -- happy to meet everyone, and very good to see you're all following events here!

Just to fill a few gaps in putting you up to speed on the latest. This is just writing off the top of my head so I won't be able to cover everything but hopefully give you an idea of where things are at and headed.

Indeed, the recent open consultation on the (lack of) implementation of the ME motion (known as V82, of March 2019) was a sorry affair to put it mildly. As you might know, a very similar consultation was held about one year ago, which actually went quite well in comparison with the Minister of Health appearing to mean business in terms of following through on the V82 motion -- passed under the previous government.

This time though, he appeared unprepared to the point of embarrassment and, more seriously, rather convinced that progress had been made by the Health Authority in charge of implementing the changes. It's true that this was also reflected in his language at points, so quite clearly he was mostly sticking to talking points informed by the Health Authority. Two MPs came well-prepared with questions, also following valuable input from the Danish ME Association and others.

The talk about diagnostic codes was a bit of a mess and, ultimately, this is not the primary issue -- the diagnostic codes of ME are indeed formally recognised as variants of G93.3 although in clinical practice, extremely few doctors are capable of diagnosing patients correctly. This is further complicated by the Health Authority promoting newly invented 'diagnoses' (neutral diagnostic codes I think is their language of preference) under the functional disorder umbrella -- among them "almen/træthed", e.g. "general/tiredness", obviously a miserably poor substitute of an ME diagnosis.

Jumping ahead, I think it was noteworthy that the revised NICE recommendations were talked about quite extensively at the consultation. It seems clear that, whenever the final draft arrives in August(?), these might well inform the approach to treatment in Denmark as well, as the current guidelines have up until now. However, the Minister of Health made a point of the revised guidelines being in a draft state and, as such, not to be taken into account just yet. So yeah, I mean, the writing's clearly on the wall but resistance to seeing it is rather fierce... But, in terms of ways forward, the publication of the final guidelines will be important and might shake up things.

I see you're already onto the matter of Swedish clinical practice having been misrepresented by the Health Authority in informing the Minister. At the consultation, he actually conceded that this needs to be looked into. Documentation is very solid with Per Julin's input having been translated into Danish and provided to the health delegation at Parliament. Looking to other countries to inform the Danish approach to treating ME is a key part of the V82 motion, so this will be interesting to follow.

Without going into too much detail, I can say that following the consultation, numerous written questions have been submitted by said two MPs, again informed to some degree by patients. This is a key development for the time ahead and some temporary reactions by the Minister suggested we will see final responses sometime in June (I think).

Lastly, as for the latest move by Liselott Blixt about a possible motion of no confidence, she mentioned about waiting to see the publication of special treatments plan advertised by the Minister at the consultation. These should see daylight within weeks, afaik. Personally, I'm not too sure about this tactic, but I must mention others think differently, so really this is just my own opinion. Either way, if introduced, the motion is unlikely to pass and also would bring a dimension of party politics to the game (Blixt is of the right-wing opposition). That seems to me like it might jeopardise the unanimity with which MPs have, after all, so far acted in passing the V82 motion. We'll see how it plays out, expect more news in the coming months.

Sorry about the longevity, I am aware that is not quite in line with forum standards. Hoping this is helpful anyhow.

 

[Kalliope]

Thanks for adding all these details, @Anders_Vang !Crossing fingers for a positive development in Denmark!

 

[Anders_Vang]

Thanks for adding all these details, @Anders_Vang !Crossing fingers for a positive development in Denmark!

Thank you! Fingers crossed indeed, it's uphill but luckily some people here are doing incredible work to help things along, especially at the ME Association. And there's a few key allies among politicians and health professionals so all forces combined there's reason to believe

 

[Roy S]

Moved from: Trudie Chalder, BPS and MUS proponent - presentations, interviews and news.

This is in reply to @ABrokenBattery's tweet.

FraudListing on Twitter: "Currently creating a page about Per Fink’s ‘clinic for psychosomatics/functional disorders’ in Denmark. This is where Danish #ME patients are sent. We asked for personal experiences with the clinic. Here is one more: “ I’m writing this for my brother with M.E... 1/5" / Twitter

He was the happiest boy. And he was bright. Always outdoors doing stuff. One winter he got mono and he just never recovered. He has been treated like sh#t by doctors in Denmark. He got the M.E diagnosis after years of barely being able to stand upright. He was sent to... 2/5

Per Fink’s clinic and that’s when it got really bad. They changed his M.E diagnosis to something like hypochondria. It’s supposed to be THE place for M.E treatment, but NOTHING positive happens in there. It’s strictly political. It’s just a place to dump unwanted people. 3/5

They give the patients psych drugs, put on mindfulness CD’s and tells them to exercise. My brother was laying on the floor for the group sessions!! I could cry just from thinking about it!! They said nothing was really wrong with him, he just had some ‘blocked emotions’ 4/5

My brother was fine until infection!! He’s never had a psych disorder! He almost completed their ‘treatment’ and he’s sicker than ever. It’s absurd that full time doctors are paid to ‘work’ in that clinic. This place should be illegal” 5/5 Translated, shared with permission.

 

[rvallee]

Copied post from Lightning Process study in Norway - June 2021 - not approved by Ethics Committee, with some moved posts following.

A 4-day mindfulness-based cognitive behavioural intervention program for CFS/ME. An open study, with one-year follow-up, 2018, Stubhaug et al has some relevance.
__________________________

This appears to be plan B, Per Fink of course. If it's not the LP, it's basically the LP with a fake mustache. It explicitly refers to the rejected study to justify it. I will safely assume they will actually use the rejection in Norway to emphasize how it's actually more important than ever, since nothing matters, especially facts.



https://www.tryghed.dk/saadan-stoet...nationer/mestring-af-funktionel-lidelse-33705

 

[chrisb]

Do we know the name of the insurance company?

 

[rvallee]

Do we know the name of the insurance company?

I'm not sure where that claim comes from, just that it was funded. The site looks like a crowdfunding platform so I'm frankly not sure what this means. Was hoping someone else knew more.