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

I'm happy to see the good news that this consultation went well.

I also have some concerns. We don't know how to treat ME/CFS because there hasn't been enough research. We need specialized centers where patients can be referred to. I worry that these centers could end up promoting dubious treatments and eventually self destruct for this reason (unlike with BPS treatments, biomedical treatments that don't work are sometimes actually stopped). At which point the BPS people can say that the biomedical approach does not work and go back to promoting their never-tested-against-comparable-placebo therapies.

The pressure to find some treatment is very high, as is patient desperation, and these things can lead to a lack of caution and critical thinking.
 
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strategist said:
I'm happy to see the good news that this consultation went well.

I also have some concerns. We don't know how to treat ME/CFS because there hasn't been enough research. We need specialized centers where patients can be referred to. I worry that these centers could end up promoting dubious treatments and eventually self destruct for this reason (unlike with BPS treatments, biomedical treatments that don't work are sometimes actually stopped). At which point the BPS people can say that the biomedical approach does not work and go back to promoting their never-tested-against-comparable-placebo therapies.

The pressure to find some treatment is very high, as is patient desperation, and these things can lead to a lack of caution and critical thinking.
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Fortunately we have many years of exactly this being tried, in the UK and Australia, and having the same outcome of doing exactly nothing. We in fact know that those attempts are so disastrous that the services deliberately do not record, let alone report, outcomes because it would prove their uselessness.

This fact will be brushed aside (expect No True Scotsman) but it must be argued. It has been tried, in fact it is the current paradigm, and it amounts to the same old nothing. The same can be said of functional clinics in some countries, including I think Denmark, with the exact same explicit dissent and rejection from the patient community and the same outcome of absolutely nothing, with a side of impairment of all progress. If done this way, it would yet again be against explicit rejection of patients, which has been the fundamental problem from the start, to create models that ignore and contradict patient experience.

It is explicitly argued that those services must be competent and that systematically excludes FND, BPS and the whole roster of acronyms that make up the imaginary landscape of psychosomatic medicine. This is not hypothetical anymore, the current model is being rejected all over the world, independently yet consistently, for being a total failure in practice. Patient needs >>>>> some physicians' wants.
 
Kalliope said:
Another open letter has been written. This time by psychiatrist Per Fink and signed by 21 other doctors and researchers.

Sundhedspolitisk Tidsskrift has an article about the debate and with an interview with among others Per Fink:
Heftig debat om kronisk træthed er i højere grad preget af enighed end uenighed
google translation: Intense debate about chronic fatigue is marked more by agreement than disagreement

This is one of the things there is apparent agreement on.
  • There is a mental component to the condition, also to a greater extent than in other somatic disorders, such as rheumatoid arthritis and the like. This may be because it is basically a neurobiological disorder, but it is not known.
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Fink clearly has a media strategy. Keeps repeating the same points over and over, and makes them sound very reasonable if you don't have any background knowledge. These are the arguments I have repeatedly noticed, I hope the Danish ME association has a good counter-strategy.
Fink & co:
Politicians aren't health experts. They shouldn't decide how to diagnose and treat patients.

Politicians and patients are being influenced by (dubious) foreigners; they should trust superior Danish expertise instead.

One should keep an open mind (towards psychosomatic explanations). I have an open mind, the biomedical proponents have not.

Prolonged inactivity and bed rest is bad, everybody knows that.

Lots of people get better with CBT and GET therefore it is the correct treatment (based on the Danish study finding 8.6% prevalence using very broad criteria, never mind about tight criteria).

An example of how reasonable Fink can sound to the uninitiated (google translated from the article @Kalliope linked to):
At the Department of Functional Disorders at Aarhus University, there is support for further research.

“The hypothesis just needs to be examined, we can only support that. However, it will be wrong to draw conclusions on hypotheses and hypotheses. We cannot use this to organize treatment or make a diagnosis, ”says Per Fink and continues:

“Sometimes it turns out that what you thought could trigger a Nobel Prize, upon closer inspection, turns out to be random and insignificant contexts. And other times, it turns out that the hypothesis that no one figured would show anything, after closer examination, turns out to hold true. No matter what, we want to listen and read curiously and attentively. ”
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What he means of course is that it's wrong to draw conclusions relating to diagnosis and treatment based on biomedical hypotheses; it's fine to do so based on his own functional hypothesis which he is certain will turn out to be true and he will wait attentively for the day the rest of the world recognises his genius.
 
Danish public service broadcaster DR.DK - which usually comprehensively ignores ME - covers the meeting with the minister, Fink's counter letter and the ME controversy in general in two articles today. Got the impression the journalists got a bit confused in the crossfire.

TV doctor: Politicians and Danish experts strongly disagree on fatigue disease
The issue of the disease ME has become a battlefield, says Peter Qvortrup Geisling.

https://www.dr.dk/nyheder/indland/t...-dybt-uenige-om-traethedssygdom?app_mode=true
Google translate for the whole page doesn't work for me for some reason.

Rasmus suffers from the disease ME: Sits in his room all day long
Today, the Minister of Health in consultation on the treatment of patients with chronic fatigue syndrome.

https://www.dr.dk/nyheder/indland/rasmus-lider-af-sygdommen-me-sidder-dagen-lang-paa-sit-vaerelse
https://translate.google.com/transl...gdommen-me-sidder-dagen-lang-paa-sit-vaerelse
 
Ravn said:
TV doctor: Politicians and Danish experts strongly disagree on fatigue disease
The issue of the disease ME has become a battlefield, says Peter Qvortrup Geisling.

https://www.dr.dk/nyheder/indland/t...-dybt-uenige-om-traethedssygdom?app_mode=true
Google translate for the whole page doesn't work for me for some reason.
Click to expand...

I translated it in bits. Here it is:

TV doctor: Politicians and Danish experts strongly disagree on fatigue disease

The issue of the disease ME has become a battlefield, says Peter Qvortrup Geisling.
Peter Qvortrup Geisling answers questions about the disease ME.
By Emil Søndergård Ingvorsen and Cathrine Lakmann
kl. 17.58

Between 10,000 and 20,000 people in Denmark suffer from the disease ME (Myalgic Encephalomyelitis), and the most ill are bedridden in dark rooms.

They have no energy to walk, eat or be with people. And for some patients, the disease occurs from day to day. Why it arises is not a medical explanation.

There has long been criticism of the Danish health system's treatment of ME patients, and this has also led to today's Minister of Health Magnus Heunicke (S) consulted.

A consultation on whether the current offer for the diagnosis and treatment of ME patients works and whether other initiatives should be considered.

Below, DR's TV doctor Peter Qvortrup Geisling answers four key questions about the disease.

What is ME?

- ME is a disease in which the symptoms manifest as abnormal fatigue, fatigue, pain and sleep disorders. Symptoms get worse when you strain, and it is estimated that about 14,000 Danes have the disease.
Why is the disease apparently so difficult to treat?
It is still being discussed how to treat ME patients' beds, says Peter Qvortrup Geisling. (Photo: Emil Hougaard © Scanpix)

- The problem around ME is that the National Board of Health calls it a functional disorder. A functional disorder is defined by being burdened by some physical symptoms that cannot be attributed to a known diagnosis and which cannot be detected by medical tests. For example, you cannot diagnose a blood test.

- So ME is characterized by disagreement on how to make the diagnosis. Furthermore, we discuss how best to treat ME patients. You know that the symptoms get worse if the patients are stressed, but do you have to push them lovingly or do you have to spare them? And these disagreements about diagnosis and treatment go across borders.
What is the best solution for ME patients?

- The solution is that the health care system is more interested in patients with ME and the disease. What is it like a disease, how to diagnose it, what causes it and how to treat it. So a health care system that takes these patients more seriously. For a lot of them, that's right.

- Now the debate has been muddled by a familiar unity of people, who from one day to the next consider ME as a physical, neurological disease, with the health authorities in the latest report considering ME as a functional disorder. Standing and watching from the sidelines is a very peculiar battle.
What are the health policy issues facing ME patients?
Health Minister Magnus Heunicke (S) has been in consultation today. (Photo: Ida Guldbæk Arentsen © Scanpix)

- If you cut to the bone, the problem is that in March 2019, the Danish Parliament decides that ME should not be a functional disorder, which the Danish National Board of Health with Danish experts in the back believes, but that it is now suddenly a neurological disease - a classic physical disease. This shift happened, to my knowledge, among other things based on input from foreign doctors.

- What the Minister of Health's consultation is about today is basically that in Denmark there is rarely a conflict between health policy and health professionalism. And then it is that things clasher. Especially if the Folketing does not think that the health professionals are moving fast enough.
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The phrase 'mental/psychological component', of an illness, is inherently meaningless: we call things 'illnesses', or whatever, largely because they cause suffering; and suffering is in the mind. Of course there are exceptions like dropping dead very quickly from a heart defect. But in chronic illnesses the mind gets a chance to catch up to things.

Use of such phrasing is an indication that the user:
-doesn't really know what they're trying to say
.........and/or
-is insinuating the condition is psychogenic/psychoperpetuated.
 
Esther12 said:
I translated it in bits. Here it is:
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Ugh, this article is a mess. Way too much politics. Mostly politics, in fact, the BPS side is entirely made of feelings but it's presented as if there were more to it. The journalists clearly cannot make sense of it when medical authorities are being so opinionated and defend the indefensible.

Is Danish medicine generally screwed up, or is this just a pocket of insanity? Their position is seriously extremely bad, detached from reason and made entirely of feels with zero concerns for patients. Is it mostly Per Fink or is the whole system bonkers?
 
Sundhedspolitisk Tidsskrift is a medical journal for the public, patients, carers and decision makers.
They have covered this debate several times and has a new article today. The Minister of Health Magnus Heunicke won't give way for doctors refusing to define ME as something else than functional disorder. However, he doesn't seem to understand how graded exercise can be a problem.

Heunicke lover ME-patienter specialiseret behandling
google translation: Heunicke promises specialised treatment for ME patients


Magnus Heunicke informed Blixt that the necessary steps have not yet been taken to implement the decision of March 2019. Thus, there is still no specialized offer - even though the National Board of Health recommends ME centers, and the National Board of Health and the National Board of Health has not introduced the new code practices that separate ME / CFS from the collective term 'functional disorders'.

The Minister acknowledged that the goal was far from being met, and in a forthcoming meeting with the health mayors and the National Board of Health will discuss how to ensure that the adopted changes are implemented and the most ill get prompt help.

“There is no one above or next to the Parliament, and when a united Parliament decides something, it must of course be implemented. There is nothing to ruffle about, ”said Magnus Heunicke.

...
However, the graduated training can give PEM the Minister did not buy.

"It is true that the ME Association warns that graduated training harms ME patients, but research says there is a low degree of evidence of the positive effect of graduated training and no evidence of aggravation as a result of graduated training," he said and went on to say that it would then be a good idea for the health committee to go to Sweden so that they could study how the ME treatment is being tackled.
 
Here's an article from the newspaper Politiken from Monday that I don't think was shared. Per Fink talks about how activists are scaring scientists away and refers to the Reuters article from last year. The chairman of the Medical Association is backing him and brings in the debate about the HPV vaccine. Cathrine Engsig from the Danish ME Association refers to the letter with 97 leading researchers recommending more research in the field and says that biomedical research attracts more researchers and is warmly supported by patients. She also emphasises that we must have an open-minded debate, but that she believes Denmark can learn from US, which discourages the Danish model of gradual rehabilitation.

Forsker måtte indlogeres på hotel under falsk navn: Sygdomsaktivister truer forskere til tavshed
google translation: Researcher had to stay in hotel under false name: Disease activists threatens scientists to silence
 
Kalliope said:
...
However, the graduated training can give PEM the Minister did not buy.

"It is true that the ME Association warns that graduated training harms ME patients, but research says there is a low degree of evidence of the positive effect of graduated training and no evidence of aggravation as a result of graduated training," he said and went on to say that it would then be a good idea for the health committee to go to Sweden so that they could study how the ME treatment is being tackled.
Click to expand...

Sounds like Cochrane?
 
Kalliope said:
Bad google translation, sorry. They mean mental as in psychological.
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so how is ME 'more psychological'?
Wesselys justification of changing to CFS was because of the 'psychological elements', yet it has been shown that pwME are no more likely to have depression/anxiety than any other chronic illness sufferers. And if you discount the BPS fear/avoidance model what exactly is more 'psychological' and where is the evidence for it?
(@Kalliope not aimed at you)
 
Kalliope said:
he said and went on to say that it would then be a good idea for the health committee to go to Sweden so that they could study how the ME treatment is being tackled.
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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:

mango said:
"Utmattningssyndrom" or UMS, burnout, (literally 'exhaustion syndrome') is a separate diagnosis in Sweden, officially accepted by Socialstyrelsen since 2005 (ICD-10-SE F438), with separate guidelines for diagnosis, treatment, rehabilitation, sick leave/social insurance etc. It's different to ME in that the prolonged physical and mental tiredness/exhaustion is caused by prolonged psychosocial stress, usually at work and/or at home. It falls under mental health.
Click to expand...

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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The Journal of the Danish Medical Association has an article about the debate with both open letters - from the Danish ME Association and from Per Fink (who has 70 signatures now and are called "ME experts" in the article).

About Fink's letter:
The sender of the open letter is professionals who have "worked clinically with this group of patients as well as research into causes and treatment options".

They warn against a conflict escalating debate, "where an attempt has been made to resolve the causes of the disease and where a picture is drawn that, on the one hand, there are patients and professionals who believe the disease has only physical causes, while on the other hand are patients and professionals who believe that the disease should be considered purely a mental disorder. "

However, it is not a true picture, they write, because there is broad agreement among experts that one does not yet know the exact reason why some develop ME, nor are there any experts who dispute that one still has to Find a treatment that can make everyone healthy.

"Therefore, the very discussion of whether it is a physical or mental illness, or possibly something quite third, is in itself absurd.

Ugeskriftet: ME-fagfolk advarer: Debatten kan gå ud over patienterne
google translation: ME professionals warn: The debate may make the situation worse for the patients
 
From the Fink letter:

Internationally, research indicates that the treatment that works best for functional disorders and ME,
are different forms of psychological treatment where you reduce the body's stress response and where
avoids the prolonged passive bed rest, but on the other hand tries to keep the body functions at equal and
slowly retraining the physical functions.

In Norway, a growing group of patients who previously belonged to the group of severely ill ME-
patients, become healthy after various forms of psychological treatment. v Some of the healthy patients have
previously been in bed in dark rooms and have been given probe food. In Denmark we have also shown that some
Patients with functional disorders and ME may recover after psychological treatment.
Click to expand...

reference v is Recovery Norge. It's so bizarre to see this specially selected collection of anecdotes being used in a debate like this. Who is stupid enough to think that is respectable?

When no one yet knows exactly what ME is, it may be an expression of hope and wishful thinking when the parliament
decides it must be a neurological disease. Imagine if you could also decide what cancer, HIV or smoker's lungs are. So much would be far more simple.
Click to expand...

Is that what the parliament is saying? Isn't it instead saying that, given the current uncertainty and evidence, the WHO's neurological classification should be used.

By trying to present themselves as open to uncertainty they try to make themselves seem more reasonable, but even in situations of uncertainty classifications are still used.
 
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New article in the newspaper Politiken.

“We are not able in neurology to take care of these patients. Research results have some effect of psychological treatment that we have no experience with in our specialty, "says Lise Korbo, president of the Danish Neurological Society.

...
“But with sclerosis, for example, we know the mechanisms of the disease in the brain, and we can see changes in scans of the brain. When we scan ME patients, we see no changes in the brain. We find nothing when doing our neurological examinations on ME patients. This is also why we think they fit better in centers for functional disorders, "says Lise Korbo.

Neurologer: De kronisk trætte hører ikke til hos os
google translation: The chronically tired doesn't belong to us

ETA: The journalist has tweeted a link to the article in case someone wants to comment. He's written several articles about ME and I believe has some overview of the debate
 
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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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Pity about the paywall, sounds promising. The picture caption reads (google translation):
"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, "writes the PhD and health psychologist in the chronicle.
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