Director of Danish Health Authority Letter to the Editor JoPR

Rick Sanchez

Rick Sanchez

Senior Member (Voting Rights)
Director of Danish Health Authority Søren Brostrøm Letter to the Editor Journal of Psychosomatic Research

Topic is regarding the Danish approach to 'functional disorders' in Denmark which includes ME/CFS.

Available @

https://www.sciencedirect.com/science/article/pii/S0022399918309498?via=ihub

Tiredness and dizziness. Headache and difficulties concentrating. Feeling bloated, rumbling in the stomach and frequent bowel movements. Pains, aches, tenderness. they are all common bodily signals that many of us experience on a frequent basis but with great variation. For some, these signals are so loud and so constant it becomes an almost constant 'state of alert'. When such a 'hurricane' of bodily signals becomes a disorder affecting quality of life and daily functioning, we call it functional disorder
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This is a sad development where the Danish Health Authority has bought into a faux scientific approach to ME/CFS, where the disease is apparently caused by some sort of bodily signal overload known as 'bodily distress syndrome'.

Somatizing diagnoses such as ‘interstitial cystitis’ or ‘myalgic encephalomyelitis’, relying on assumptions or hypotheses of pathology, are often consensus-based and poorly defined symptomatic syndromes rather than clear disease entities based on rigorous scientific study and systematic evidence. ‘Painful bladder’ or ‘chronic fatigue’ perhaps work better as descriptive terms because they are directly rooted in the symptoms experienced by the patients. And it makes sense for us in the Danish Health Authority to accept the diagnostic umbrella term of ‘functional disorders’, because we achieve a common language and a common understanding of diseases that exhibit common patterns and where a set of common treatment principles often are effective. While the term ‘functional disorders’ is not perfect, we lack a better proposal meeting universal consensus, and we feel it will work well under the present circumstances. As a consequence of the widespread misconceptions and the inadequate and fragmented care, patients with functional diseases are often medicalized, misdiagnozed and mistreated.
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Yikes... The director honestly thinks 'chronic fatigue' is better suited for patients than 'ME/CFS' because it is supposedly more descriptive. Can't wait for him to campaign against the influenza diagnosis, once he learns the etymology of the term.

On a more serious note. This also shows the complete lack of understanding of ME/CFS, and shows that the Danish Health Authority sees the illness as simply being a condition where fatigue is present. Any ME/CFS researcher would shake their head at a understanding of ME/CFS that seems to completely ignore the immune system.

We have evidence to show that graded physical exercise and cognitive therapy are effective in a number of functional disorders.
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Still recommending CBT and GET of course. No surprise here.

The use of the term ‘functional disorders’ has been critized, also in Denmark. Some patients and some professionals feel that the best way out of stigmatization is to use a new fresh set of concepts and diagnoses. As an example, it has been suggested to use the term ‘complex symptoms’ as a neutral term to describe this group of patients. I regret that we have not been able to achieve a common terminology across our small country. And I do not feel that ‘complex symptoms’ is a good term, because in most cases the symptoms are common, such as fatigue, dizziness, headache, pain etc. Unfortunately, the stigmatization and misconceptions around functional disorders can lead to individual health professionals, health care institutions and even authorities such as The Danish Health Authority being exposed to often considerable pressure to recognize and promote certain diagnostic terms and entities, presumed causalities or specific treatment modalities, while at the same time rejecting others such as the term ‘functional disorders’. But if we succumb to pressure without a sound basis in well-meaning attempts to counter stigmatization and discrimination of patients, we run the risk of actually sustaining or feeding stigmatization and misconceptions thus causing patients to receive ineffective or potentially harmful treatment or maintaining patients in their illness in spite of the existence of effective and evidence-based treatment.
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I feel the ''succumb to pressure'' bit is particularly revealing. The Danish Health Authority sees the criticism of 'Functional disorders' entirely as misguided patient advocacy driven by patients who suffer from scientific illiteracy. They don't seem to even acknowledge that genuine criticism of functional disorders or CBT and GET is frequent in academia. This is troubling because advocates for 'functional disorders' are outnumbered significantly, yet they still somehow see it as giving into pressure from what they consider to be patients clueless about their own illness.
 
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strategist said:
Oh dear, he thinks he's championing good science and helping patients.
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This entire thing is so bizarre.... and so terribly embarrassing.

I mean, what does he even hope to achieve with this letter to the editor? Has the criticism really become so bad that he seeks validation from the ''international'' community of British, Dutch and Norwegian psychologists and psychiatrists? He must have an extraordinary amount of faith that 'functional disorders' and CBT / GET is the way forward. Because he had little if anything to lose before he started doubling down on the entire thing like he has been doing the past year.

Would love it if someone with a scientific background could correct his pseudoscience. Because this is just :banghead::banghead:
 
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Somatizing diagnoses such as ‘interstitial cystitis’
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Title : Risk of Urinary Tract Carcinoma among Subjects with Bladder Pain Syndrome/Interstitial Cystitis: A Nationwide Population-Based Study

Link : https://www.hindawi.com/journals/bmri/2018/7495081/

Abstract

Objective.

To investigate the subsequent risks of urinary tract cancers among individuals with bladder pain syndrome/interstitial cystitis (BPS/IC), and gender differences, as well as the effect of associated comorbidity using a population-based administrative database in Taiwan.

Patients and Methods.

BPS/IC subjects (10192) and their age- and sex-matched non-BPS/IC control subjects (30576), who had no previous upper urinary tract cancer (UUC), bladder cancer (BC), and prostate cancer (PC), subsequently developed these disorders from the recruited date between 2002 and 2008 and the end of follow-up 2011. A Cox proportional hazards regression model was constructed to estimate the risk of subsequent UUC, BC, and PC following a diagnosis of IC/BPS. The effect of associated comorbidities was measured by Charlson Comorbidity Index (CCI). The risk of outcomes was assessed with Kaplan-Meier curves.

Results.

In the BPS/IC subjects, 37 (0.36%) received a diagnosis of BC, and 22 (0.22%) received a diagnosis of UUC; both were significantly higher than the control group, 19 (0.06%) for BC and 30 (0.10%) for UUC. Cox proportional analysis revealed that the adjusted HR for BC and UUC during the follow-up period for patients with IC/BPS was 5.44 (95% CI: 3.10-9.54) and 1.97 (95% CI: 1.13-3.45) than that of comparison subjects. The HRs went up to 5.66 (95% CI: 3.21-9.99) and 2.01 (95% CI: 1.14-3.55) after adjusted by Comorbidity Index (CCI). The male BPS/IC patients have a higher adjusted HR for BC; however, female patients have a higher adjusted HR for both BC and UUC. The adjusted HR for PC has no difference between BPS/IC and control group.

Conclusion.

Patients with BPS/IC are at risk of developing BC in both males and females, and UUC in females. This result reminds physicians to evaluate the potential risk of subsequent development of BC and UUC among individuals with BPS/IC.
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[I separated the abstract into sections to make it easier to read.]

If interstitial cystitis (IC) is a somatizing diagnosis, does this imply that bladder cancer is also a somatizing diagnosis too? <sarcasm>

There have been various papers produced about IC in the last year or two. It turns out that traditional urine analysis misses various infections that can be treated, and these missed infections can be found by investigating the DNA found in urine.

Title : Next Generation Urine Testing Now Available – Reveals Hidden and/or Chronic Bacterial & Fungal Infections

Link : https://www.ic-network.com/next-gen...n-and-or-chronic-bacterial-fungal-infections/
 
Yes, bizarre and self contradictory in its argumentation..

A number of diseases that were previously subject to stigmatization has in the modern era been destigmatized. This is the case for a number of sexually transmitted diseases, stress, depression, epilepsy, congenital metabolic diseases or malformations etc. This destigmatization has been achieved through a better understanding of disease mechanisms, development of effective and targeted treatments, information, dialogue with patients and by challenging taboos, silence and doubt. Equally, modern health care can break the stigmatization and misconceptions surrounding patients with functional disorders by meeting them with resepct and empathy, listening to their stories, understanding their symptoms and their suffering and by offering patient-centered and evidence-based treatment and care.
 
Kalliope said:
Equally, modern health care can break the stigmatization and misconceptions surrounding patients with functional disorders by meeting them with resepct and empathy, listening to their stories, understanding their symptoms and their suffering and by offering patient-centered and evidence-based treatment and care.
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How about listening to patients when they say that the concept of "functional disorders" is nonsense, and that it's the cause of stigma, not the solution to it?

Indeed, the demonstration of this fact is right here. Do words like "succumb to pressure" increase stigmatization or not? They imply that patients are unreasonable and cannot govern themselves.

I note that one man's "succumb to pressure" is another man's "listening to concerns and making changes".

This guy has it all backwards and is a complete disaster.
 
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I think this guy is suffering from functionally- low IQ disorder. And FLID is not a complex symptom.

Sadly, only a diagnostic marker(s) for ME will make the shrinks abandon their pseudo-science, their one trick pony, their it's-all-in-your-mind obsession. There should be a pathology named this inability to see reality with any compassion. What is wrong with these people?

I am struck by the power differential: patients are at the mercy of doctors' authority.
 


Sorry if this is a bit flippant, but when I come across doctors like this who are so certain of their psychological explanations, I'm often reminded of this scene from the 1956 version of "Invasion of the Body Snatchers."

In the video above, small town physician, Dr. Miles Bennell (Kevin McCarthy), tries to convince an old friend that her doubts about the identity of her "Uncle Ira" are all in her mind.

Dr. Bennell will come to learn just how wrong he is...


One of the clever bits in the story is that the eventual spokesman for the alien seed pods that are absorbing, duplicating and pacifying the town's population just happens to be Dr. Dan Kauffman... the local psychiatrist.
 
This letter is just ignorant political propaganda of a sort that has no place in an academic journal. But that's OK because this is not an academic journal.

The Multidisciplinary Team Is under threat it seems - and so it should be. It is a pity that some of the ME charities seem to think it is a valid concept.
 
How about listening to patients when they say that the concept of "functional disorders" is nonsense, and that it's the cause of stigma, not the solution to it?
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After reflecting a bit, it's more correct to say that there exist poor attitudes towards patients with symptoms that are difficult to explain.

The functional disorder diagnosis and treatments like CBT that want to correct faulty perceptions come from the heart of these poor attitudes. The functional disorder diagnosis is not counter to poor attitudes, it's just a more formal expression of the same ideas.

Saying a few superficially kind things does not change the fact that patients are being treated like third class citizens in the healthcare system. They are not given treatment, but brainwashing sessions to stop them from seeking help for their symptoms.
 
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"Complex symptoms", vs. "Common Symptoms".


What is a complex symptom? Combining many common symptoms gives us ME.Complex disease, that's ME. Seems like the Director wants to boil down ME to just fatigue, no matter what biomedical experts and pwME say.
 
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Kalliope said:
Yes, bizarre and self contradictory in its argumentation..

A number of diseases that were previously subject to stigmatization has in the modern era been destigmatized. This is the case for a number of sexually transmitted diseases, stress, depression, epilepsy, congenital metabolic diseases or malformations etc. This destigmatization has been achieved through a better understanding of disease mechanisms, development of effective and targeted treatments, information, dialogue with patients and by challenging taboos, silence and doubt. Equally, modern health care can break the stigmatization and misconceptions surrounding patients with functional disorders by meeting them with resepct and empathy, listening to their stories, understanding their symptoms and their suffering and by offering patient-centered and evidence-based treatment and care.
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Hot damn. That's just... I mean it's borderline evil. I know they probably believe in this nonsense but the incompetence is just breathtaking when it is so confidently applied. To be arguing that what they are doing has been shown wrong time and time again and argue that the solution is literally more of the same thing that has failed hundreds of millions in the past.

Take away their keys. This is madness. None of those people should be in a position of authority over anyone, they are utterly incapable of exercising good judgment. This is the bully calling for civility and compromise while they are holding us in a headlock and we're begging for air. What they're asking us is to stop resisting and just let them squeeze, for our own good of course.
 
DokaGirl said:
"Complex symptoms", vs. "Common Symptoms".


What is a complex symptom? Combining many common symptoms gives us ME.Complex disease, that's ME. Seems like the Director wants to boil down ME to just fatigue, no matter what biomedical experts and pwME say.
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They mean psychosomatic. They always mean psychosomatic when using similar terms. This is an ideological school of thought rooted in deceit, they claim to agree that the symptoms are real because they know they can't say the quiet part loud. So it's "complex", or "vague" or "perception of symptoms matters more than actual symptoms".

This is the fundamental failure: it is all rooted in deceit. Even their own manuals recommend to lie to the patient in order to gain their trust and better gaslight them. That they believe they are correct in doing this is irrelevant, this is extremely unethical, with a foot firmly planted in the immoral door.
 
Thank you @rvallee for your excellent explanation.

Yes, always psychosomatic. "Complex symptom" makes it sound as if it's impossible to fathom what's going on. I see symptoms as simple, even if the biomedical cause behind them is not.

On the lighter side, I pictured "complex symptoms" as something like fire shooting out of eyes, while smoke pours out of the ears, with head spinning, and limbs swinging wildly, on someone whose skin has turned green.
 
rvallee said:
"perception of symptoms matters more than actual symptoms".
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Actually, what are real and perceived symptoms? Is there a difference? And how can outstanders (i.e. someone without those symptoms) differentiate perceived vs. real? Obviously the body didn't consider developing proof systems for the outside...that egotist only wanted to ensure its own survival... :rolleyes:
 
Interstitial cystitis is described as a somatizing disorder because they cannot grow any bacteria from samples. Just recently it has been shown that urine is not a sterile fluid as had been thought. Quite simply, not all the bacteria that colonise the bladder will grow on agar plates.

The assumptions made in science and medicine can be astounding; over 60 years of passion for scientific discovery I have found over and over that today's confident assertion that something cannot be is overturned by tomorrow's research. Understandable, perhaps, but the step from "we don't know to" "nothing to know" should have a bit of humility behind it. Instead careers are built by putting in speculation over knowledge.
 
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