Denmark: Open letter to health politicians from Danish ME Association with impressive list of signatures

Ravn said:
Pity about the paywall, sounds promising. The picture caption reads (google translation):
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When I google his name, it comes up that he wrote an opinion piece in 2014 as head of a center for functional disorders in Copenhagen. He criticised the suspicion patients with unexplained medical symptoms/functional disorders were met with. Seems he is now working at a center for complex illnesses in Frederiksberg.
https://www.researchgate.net/profile/Peter_Cour
 
mango said:
Unfortunately it seems some of the positive aspects of the ME situation in Sweden are repeatedly being overstated. It is true that there is a separate diagnostic code etc for burnout:



However, how ME is viewed and treated in different parts of the country varies a lot, and also between different healthcare centers in the same city.

There's the good but extremely rare examples like the ME center at Stora Sköndal in Stockholm. But there are loads of Swedish healthcare professionals including doctors as well as researchers, politicians, policy makers etc who view ME as a psychological/psychiatric/behavioural/health anxiety/cultural issue, or believe that ME is the same thing as burnout, or who flat out deny that ME exists at all.

Plenty of GPs and even some so called ME specialist centers subscribe to the BPS model, offering CBT/GET and similar approaches. There is a very influential BPS lobby who are given plenty of space in the media/public debate, who get actively involved in political/goverment processes by trying to stop biomedical ME centers from being established or get their contracts cancelled, who actively promote PACE and Per Fink's functional somatic model etc. There is plenty of BPS research into ME happening. There is very strong stigma, discrimination, ignorance, prejudice and contempt. Etc etc etc.

Actually, only yesterday there was a news article in a local Swedish paper (Ludvika Tidning, 14 January. I haven't been able to find it online, sorry.) about the similarities and differences between ME and burnout. Indre Bileviciute-Ljungar, a well-known so called ME specialist and BPS researcher (for example, medical expert of the currently ongoing the Mind-Body Study), was quoted saying some reasonable things -- like highlighting the current lack of knowledge and the need for more research -- but also things like "One must try different treatment and rehabilitation methods to create evidence and not wait for evidence that can take many years yet." and "you can try a burnout treatment or rehabilitation and see how the [ME] patient responds".

I'd say that's really dangeous advice. Way too many of us have already deteriorated severely and permanently from being pushed into the "illness-denying" kind of CBT, exercise and other kinds of "activating" interventions and experiments :(

This, by the way, is the kind of people who are actively involved in drawing up our treatment guidelines etc...

The Danish people need to choose their study visit destination very carefully. As I already mentioned, there are several so called ME specialist centers that reportedly have strong BPS views (for example Smärthjälpen in Göteborg and Pain and rehab center at Linköping University hospital). They would have no problems finding Swedish healthcare professionals and politicians that support the functional somatic/MUS or cognitive behavioural (CBT/GET) models of ME, if that's what they were looking for... Please be careful.
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Thank you @mango, for giving a (sadly) very accurate overview of the ME care situation in Sweden.
The only place I would recommend to visit is Stora Sköndal.

I agree that the suggestion by Indre Bileviciute-Ljungar, to "try treatment for burnout and see how the patient responds", is very dangerous. As that treatment per definition implies increased activity.

To be cited giving such advice truly gives her away (as does her research) , as either not understanding PEM, or as not caring if patients get harmed. Either way she's very harmful for ME patients and the ME community. :(
 
Article about functional disorders at the Danish news site about research called Videnskab.dk
I think it is odd they choose to define ME as a functional disorder in the article given the current debate in Denmark.

Patients with the so-called functional disorders can typically have pain in various parts of the body, they are constantly exhausted, dizzy, have nausea or other symptoms. Some suffer from diseases known by names such as fibromyalgia, chronic fatigue syndrome (ME) or irritable colon.

...
The article also mentions a long term study collecting health data to find out how patients with different functional disorders differ from healthy ones. But it seems they are running out of money..

The project, called DanFunD , has so far been funded by the Trygfonden and Lundbeckfonden. But the money is temporarily suspended, so the studies are currently running low, says research leader Torben Jørgensen.

“It is very costly to investigate this at the bottom. But we have to go the heavy way if we want a proper answer, "Torben Jørgensen, a senior scientist and professor emeritus of epidemiology.

“We don't know what it all ends up with, but we have material to gain a greater understanding of functional disorders. We also encourage foreign colleagues to embark on similar studies so that we can build solid knowledge in this field. "

Funktionelle lidelser: "Ingen sydomme kommer som et lyn fra en klar himmel"
google translation: Functional disorders: "No illness comes out of the blue"
 
One gets the impression the push for functional disorders is how the medical community in Denmark tries to deflect the suspicion that the HPV vaccine causes some still unknown disease. Seems like an own goal because there's hardly a better way to create distrust than using such an obviously nonsensical construct like functional disorder. That makes it seem like there is an interest in not finding out what's really making these young people sick.
 
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Kalliope said:
The article also mentions a long term study collecting health data to find out how patients with different functional disorders differ from healthy ones. But it seems they are running out of money..
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Link to the study (introduction) - not promising:
https://www.frederiksberghospital.dk/ckff/sektioner/SBE/danfund/Sider/DanFunD-engelsk.aspx
The DanFunD study represents the first major longitudinal population-based study in the field of what is commonly referred to as functional disorders/functional somatic syndromes or medically unexplained illnesses. These conditions are fairly common in the general population but cannot be explained in terms of a conventional medical or surgical disease. In the DanFunD study, the functional disorders are represented by irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, whiplash associated disorders and multiple chemical sensitivity. However, data will likewise be used to study other conditions, such as cardiovascular disease, diabetes, respiratory diseases, allergy and asthma. ...
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Link to the study (extended information) - more promising, there's potential in this project, if done well, by the right people:
https://www.frederiksberghospital.d...der/DanFunD-Study---extended-information.aspx
We are also aware that the unifying label for these conditions has been interchanging, but we have chosen to use the term “functional disorders" because it is a terminology commonly used in the scientific literature. However, it is important to emphasise that we use the term functional disorders without any pre-assumption about the underlying medical causes. How best to define a disease, identification of the primary causes and uncovering the consequences of a disease for persons and the society are all classic research questions within public health science and likewise the primary motivation behind this epidemiological study. ...

... We expected that findings from DanFunD will lead to a better delimitation of functional disorders, including whether they represents distinct but closely associated conditions or whether they are in fact all different manifestations of the same condition. ...
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Link to publications and presentations that have come out of this study so far - arrrgh!!!:
https://www.frederiksberghospital.d...und/Sider/Publications-and-presentations.aspx
Per Fink
Characteristics of functional somatic syndromes and bodily distress syndrome in the general Danish population–The DanFunD study. 15th International Congress of Behavioral Medicine, ICBM 2018. Santiago, Chile. November 2018 (Oral presentation)
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Kalliope said:
An opinion piece by a psychologist supporting ME patients. It's behind paywall.

https://www.kristeligt-dagblad.dk/kronik/hoerer-me-hjemme-i-psykiatrien-eller-laegevidenskaben
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The opinion piece has now been opened. It is very good!

The National Board of Health should not ally itself with a controversial perspective on these diseases or claim that the Board is a more scientific point of view.

The National Board of Health should stop seeing patient organizations as part of the problem, but involve them as part of the solution.

The National Board of Health should withdraw the redundant and bland Danish special diagnosis "functional disorder" and instead orient itself internationally on diagnoses.

The National Board of Health should choose a language that does not, in advance, contradict with the patient organizations what "functional" as known.

The National Board of Health should work broadly and transparently and not closed and only with the few doctors with whom the Board already agrees.

google translation: Health psychologist: Our approach to ME must be completely redone
 
Kalliope said:
The opinion piece has now been opened. It is very good!
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I'm glad to hear it. I looked up the research record of the writer and was fearing the worst, something like BPS+spiritual. Very happy to be proven wrong.

Still trying to figure out what a health psychologist is - as opposed to a non-health psychologist? :confused: Admittedly there are some psychologists out there who aren't exactly contributing to their patients' health...
 
Kalliope said:
The opinion piece has now been opened. It is very good!

The National Board of Health should not ally itself with a controversial perspective on these diseases or claim that the Board is a more scientific point of view.

The National Board of Health should stop seeing patient organizations as part of the problem, but involve them as part of the solution.

The National Board of Health should withdraw the redundant and bland Danish special diagnosis "functional disorder" and instead orient itself internationally on diagnoses.

The National Board of Health should choose a language that does not, in advance, contradict with the patient organizations what "functional" as known.

The National Board of Health should work broadly and transparently and not closed and only with the few doctors with whom the Board already agrees.

google translation: Health psychologist: Our approach to ME must be completely redone
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Reply from Per Fink

Today we work with a so-called multifactorial understanding of diseases - or a bio-psycho-social model - in which all illnesses to a varying degree include both biological, psychological and social conditions. We have no objective measurement methods for functional disorders, and we must make the diagnosis based on a typical symptom pattern.

We have achieved a lot in Denmark, both in terms of treatment and research in functional disorders, and are well advanced internationally.

Therefore, it is very positive that the National Board of Health has focused on the area so that the effort can be nationwide. But there is still a long way to go and there is a great need for further efforts.

Overlæge: Vi må tage funktionelle lidelser alvorligt
google translation: Senior doctor: We have to take functional disorders seriously
 
Kalliope said:
Reply from Per Fink

Today we work with a so-called multifactorial understanding of diseases - or a bio-psycho-social model - in which all illnesses to a varying degree include both biological, psychological and social conditions. We have no objective measurement methods for functional disorders, and we must make the diagnosis based on a typical symptom pattern.

We have achieved a lot in Denmark, both in terms of treatment and research in functional disorders, and are well advanced internationally.

Therefore, it is very positive that the National Board of Health has focused on the area so that the effort can be nationwide. But there is still a long way to go and there is a great need for further efforts.

Overlæge: Vi må tage funktionelle lidelser alvorligt
google translation: Senior doctor: We have to take functional disorders seriously
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This is all going to blow up really bad. I don't know what the hell they are thinking this will do to the credibility of medicine and expertise in general. The BPS model is obsessively unifactorial and in fact focuses exclusively on imaginary concepts that have no validity. Decades ago the nonsense was mostly kept private and out of public eyes. Not this time, it will create a crisis of confidence that will be commensurate in size with how effectively this pseudoscience succeeds at getting traction.

Though this is amazing:
We have no objective measurement methods for functional disorders, and we must make the diagnosis based on a typical symptom pattern.
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Literally the exact basis by which this ideology insists ME and other discriminated chronic diseases do not exist as they are reported by patients. Here it must be believed because they are "experts". Nevermind there are also experts who understand this is nonsense and have the good sense of not making baseless assertions. "Trust us we're experts" is absolutely terrible when mixed with blatantly making stuff up.

There is a distinct lack of thinking about consequences here. Not surprising when they don't even consider all the death and suffering this has already caused in the past and present. How can people trust experts in the future when they commit malfeasance this openly? I personally trust science, not experts. But most people do not understand that there exists a real process by which things are not so simple, that science isn't simply about trusting experts' personal opinions.

Bypassing the scientific method entirely is the best way to completely obliterate public confidence, not only in experts themselves, but in the entire process and value of science. No doubt that in the whole vaccination-autism controversy decades of experts baselessly and cruelly insisting that the parents of sick children, doing their best to help the child they love, are responsible for their child being sick. Trust broken is very hard to regain.

This is why we can't have nice things.
 
Kalliope said:
Reply from Per Fink

Today we work with a so-called multifactorial understanding of diseases - or a bio-psycho-social model - in which all illnesses to a varying degree include both biological, psychological and social conditions. We have no objective measurement methods for functional disorders, and we must make the diagnosis based on a typical symptom pattern.

We have achieved a lot in Denmark, both in terms of treatment and research in functional disorders, and are well advanced internationally.

Therefore, it is very positive that the National Board of Health has focused on the area so that the effort can be nationwide. But there is still a long way to go and there is a great need for further efforts.

Overlæge: Vi må tage funktionelle lidelser alvorligt
google translation: Senior doctor: We have to take functional disorders seriously
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What a word salad! :sick:

"Peter la Cour also makes it sound as if functional disorders are purely a Danish invention. It is true that Danish researchers have contributed greatly to the extensive research underlying the new diagnoses - as opposed to, for example, the ME diagnosis, which is not based on research, but solely on consensus among a group of doctors and patients."
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Extensive research? Really?
 
MillionsMissingDenmark has shared a summary from a meeting yesterday between the Danish ME Association and the Danish Health Authority. It doesn't seem that things are moving forward, and it also seems that a lot will be depending on how the revised UK NICE guidelines turns out.

Google translation:

Meeting with the Danish Health Authority
Four representatives of the ME Association incl. Vice President Cathrine Engsig met on February 6, 20, with four representatives from the National Board of Health, including planning director Helene Probst. First of all, the ME Association wanted to clarify the concepts of "chronic fatigue" and ME. The Danish Health Authority wants to mix all fatigue illnesses "to get an overview of the area and to advance research."

A working committee for functional disorders with representatives from the medical companies has prepared a draft for the specialist planning of functional disorders. It must now be approved by the Regional Background Group for Thesis Planning and the Advisory Committee on Thesis Planning under the Danish Health Authority. A number of regional centers for functional disorders are being set up, which must meet some specific requirements to have the function assigned and ME patients having rehabilitative treatment there. The current 5 regional centers have not yet been approved as such, according to the thesis plan.

Two national centers for the severely ill with "functional disorders" are also being targeted, and Hammel Neurocenter was mentioned as an option.
The Danish Health Authority hopes that this model will gather knowledge about ME in the Danish health system. The Board thus goes the opposite way of what they do in Sweden, where they have specialized ME clinics. - The Board does not believe there is enough knowledge about ME to make a definition of the disease.
Virtually the only ME Association and the Danish Health Authority agreed upon was that it will be interesting to see the revised UK NICE guidelines for ME. https://www.nice.org.uk/guidance/cg53


 
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strategist said:
One gets the impression the push for functional disorders is how the medical community in Denmark tries to deflect the suspicion that the HPV vaccine causes some still unknown disease. Seems like an own goal because there's hardly a better way to create distrust than using such an obviously nonsensical construct like functional disorder. That makes it seem like there is an interest in not finding out what's really making these young people sick.
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Yeah it's completely intertwined, and the HPV debate is still used as a passive aggressive way to try and label the Danish ME/CFS community as anti-science.

Just like you said, yes, this entire case is a complete fiasco for the faith in the Danish scientific community. Because the Danish health authority has basically been digging themselves into a hole they can not get out of. I mean being schooled by Danish politicians who don't even have a scientific background? Especially after having whined about the politicians interfering, claiming that they should stay out of matters they don't understand. At this point they are going to look like complete clowns if they concede.
 
rvallee said:
This is all going to blow up really bad. I don't know what the hell they are thinking this will do to the credibility of medicine and expertise in general. The BPS model is obsessively unifactorial and in fact focuses exclusively on imaginary concepts that have no validity. Decades ago the nonsense was mostly kept private and out of public eyes. Not this time, it will create a crisis of confidence that will be commensurate in size with how effectively this pseudoscience succeeds at getting traction...
Click to expand...


Fink and his pals have been banging their BDS drum, very hard, since 2007.

Disturbingly, over the past 13 years, I haven't see too many clinicians and clinician researchers outside the field of liaison psychiatry and psychosomatics publishing critical papers on the BDS construct.

The DSM-5's SSD was one of the new DSM categories that received the largest number of comments in the three public review exercises.

But the core ICD-11's sister construct, BDD, has garnered little critical interest from general medical disease clinicians, researchers and general practitioners.

For its non mandatory, "ICD-11 PHC" 27 mental disorder guideline, aimed at primary care and low resource settings, the WHO will likely approve the proposed "BSS" construct (a BDS-lite).

The WHO doesn't appear to give a rat's arse about the credibility, construct validity, safety and reliability of the core ICD-11's BDD or the proposed non mandatory, ICD-11 PHC's, BSS.

The general medical disease field doesn't appear to give to give a rat's arse, either, for construct validity nor for the safety of their patients.
 
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