ETUDE: Encompassing Training in fUnctional Disorders across Europe

Dolphin

Senior Member (Voting Rights)
Dutch study on functional complaints (including CFS) receives €4 million in European funding

"Some people particularly benefit from physical therapy, while others are more in need of support from a psychologist."


https://www.dvhn.nl/groningen/Als-de-dokter-niks-kan-vinden-25856002.html
https://www.twitlonger.com/show/n_1srb6c3

Online translation:
Two out of three patients cannot be diagnosed at the outpatient clinic for internal medicine at the UMCG
Inki the Younger • Today, 05:25 • Groningen
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Judith Roosmalen (right) and Marina de Koning-Tijssen. . Professor and neurologist UMCG conduct research into medically misunderstood physical complaints. Photo: Corné Sparidaens

You feel sick, but the doctor doesn't know what it is. The specialist cannot find anything either. Then there is a good chance that you suffer from so-called functional complaints. In conversation with medical biologist Judith Rosmalen and neurologist Marina de Koning-Tijssen of the UMCG.

The doctor knows everything? He taught on for it. If you are ill, you go to the consultation hour, where a diagnosis is made, a medicine is prescribed and the complaint disappears. Do you think.

But the doctor doesn't know everything. He can refer to the hospital, but there too they regularly have to remain guilty of the answer. There is a chance that the patient will have to leave the doctor's office or outpatient clinic, disappointed and worried, because his complaints are not understood.

Very often no explanation is found

And that chance is quite high: no explanation is found in about half of the number of GP visits. Two out of three patients cannot be diagnosed at the outpatient clinic for internal medicine at the UMCG. They belong to the group of people who suffer from misunderstood diseases, in medical terms: Somatic Inadequately explained Physical Complaints, also known in the Netherlands as Solk, or 'functional complaints'.

"It is the most expensive health problem, after dementia," says Judith Rosmalen, professor of psychosomatics at the University of Groningen. Last month it was announced that Rosmalen can count on a European subsidy of 4 million. She will be conducting an international research project together with neurologist Marina de Koning-Tijssen. An interdisciplinary study that maps Solk's mechanisms, aims to improve diagnosis and treatment, and reduces stigma.

No explanation? Then you are not sick in the eyes of many

Those who hyperventilate, have a tension headache, suffer from low back pain or an irritable bowel, who suffer from chronic fatigue syndrome, or have unexplained movement disorders, will be able to confirm it: if the doctor has no explanation for the complaints, you are in the eyes of many not sick.

Functional complaints are systematically ignored and downplayed, according to Rosmalen and De Koning-Tijssen. Not only at the birthday party, where friends and family members suggest that it is probably 'in the ears', but also in the doctors' consulting rooms, who often find the subject difficult to discuss.

Doctors cannot know and measure everything in medicine. There is doubt. There are new insights. Rosmalen and De Koning-Tijssen once again realize the importance of paying attention to functional complaints. "I sometimes ask during lectures: who thinks multiple sclerosis is a disease?" Then almost three-quarters of those present raise their hands, '' says Rosmalen. "Then I ask if the chronic fatigue syndrome is a disease, then a finger goes up here and there."

A 'vague complaint' is not a serious problem

This says a lot about how the medical world views these things. It is a 'vague complaint', so not a serious problem. De Koning-Tijssen: ,, Colleagues often say what it is not, but the patient wants to know what it is. I discuss with my patients that they are diagnosed with functional movement disorders based on certain criteria, and I also discuss those criteria with them. ''
They know amazing examples of medical bias. The radiologist who talks in a national newspaper about 'pain here, pain there patients' who 'actually know that they do not need a doctor' and increase the healthcare costs. The lecture by the company doctor who tells his audience in tasty anecdotes tells how he tries to expose his patients by spying in the waiting room whether they still show the same complaint picture. Rosmalen: "So if you are a patient with misunderstood complaints that you cannot help well with, then you also have to fight against these kinds of prejudices."

In an earlier opinion piece in Trouw , she argued for more attention to the matter: "Misunderstood complaints are not so different from understood complaints," Rosmalen said. 'The characteristic difference is that, including complaints, a medical deviation has been measured, which means that there are sometimes more specific treatment options. Furthermore, there are mainly similarities: complaints and limitations are strongly related to social and psychological factors, both included and misunderstood complaints. '

Misunderstood patients also deserve care and guidance

Understood or misunderstood: in both cases patients deserve good care and guidance, say Rosmalen and De Koning-Tijssen. Although research shows that misunderstood complaints often pass again, some of these people become chronic patients.

Both women have extensive experience with research into functional complaints. A few years ago, Rosmalen, professor of psychosomatics, designed 'Grip'; an online system that supports both patient and healthcare provider. As head of the rare movement disorders section of the neurology department, De Koning-Tijssen regularly has to deal with tremors and body shocks that no one can explain.

To break through such a problem, doctors, physiotherapists and psychologists must work closely together. Customization is of great importance. De Koning-Tijssen: ,, As a doctor, you have to think outside the box. What is good for this patient in this situation? For example, some people suddenly cannot walk properly anymore. Often they have unconsciously learned that along the way. If they then walk backwards or walk in certain forms under the guidance of a physiotherapist, that nervous system is controlled in a different way. You actually learn to walk again. That can work well. But you have to see what is good and what is not per patient. ''
“Dealing with these complaints is custom work. Some people particularly benefit from physical therapy, while others are more in need of support from a psychologist. Serious or long-term complaints often involve more healthcare providers, '' says Rosmalen.

It is necessary that young doctors, care providers, as well as scientists, realize functional complaints and are aware of the need to take this seriously, in the opinion of Rosmalen and De Koning-Tijssen. The European-funded research, in which 15 PhD students will participate next year, has the important aim of training and informing that young profession. So that the professionals of tomorrow, who will not always know, will not send the patient into the reed with clods of incomprehension and will also confront the 'vague complaints' with serious medical attention and research.
 
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I replied with this. Google translated.

It all sounds very nice but Prof. dr. Rosmalen has been in the Health Council (GR) for 2 years after the citizen initiative #recognizeME and still refers to CFS? Or does she actually refer to chronic fatigue and not ME or CFS? Confusion al over.

Study Jason et al. 2020 indicates that using the term CFS increases the risk of suicide. You would think that someone who is committed to increase knowledge, reducing stigma and signing a GR report that speaks about ME / CFS is therefore consistent with the use of this kind of terminology?
https://www.tandfonline.com/doi/abs...scroll=top&needAccess=true&journalCode=udst20

Prof Rosmalen has been promoting harmful therapies for people with "chronic fatigue syndrome" for years. Despite the fact that these treatments cause deterioration.
https://docs.google.com/document/d/1j2ZNAi2d7QQrYLal2XgIG5veZZhDVGnJ6ZIuNhFyKNA/edit?usp=drivesdk

The model for these treatments is based on people with chronic fatigue. Not on people with ME CFS. However, patients are still taught that after any initial infection they are actually no longer ill, despite the fact that science contradicts this. Movie for a. GRIP:














That ME, or in accordance with GR ME / CFS, is characterized by a form of exercise intolerance (PEM) and that they become sicker due to these types of treatments does not seem to make much difference to Professor Rosmalen and her project GRIP.

https://www.jmir.org/2019/10/e14037/
While with the best intentions, using terms such as functional, CFS, too broad criteria that make PEM optional, harmful treatments at the core of this type of work is still counterproductive. I think the 4 million grant could have been better spent. It's wasted money again.

http://anilvanderzee.com/de-angst-in-de-ogen-van-mijn-arts/


I'm not a fan of her work
 
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What a waste of 4 million Euros.

Yes. But it's worse than that. It's like a virus, infecting more who will go on to infect others, and use up more research funding on 'clods of incomprehension'.

The European-funded research, in which 15 PhD students will participate next year, has the important aim of training and informing that young profession. So that the professionals of tomorrow, who will not always know, will not send the patient into the reed with clods of incomprehension and will also confront the 'vague complaints' with serious medical attention and research.
 
Shame!

The functional disorders paradigm exists to oppress people with difficult health problems because it's designed to prevent them receiving adequate investigation and care. It's also designed to allow doctors to abandon patients in good conscience. Under the superficial appearance of care, patients are cruelly neglected.

These so called researchers keep this system running. I wonder if they are aware what they're doing, or if they're merely mindless cogs in the system, doing what they are pressured to do by the healthcare system. The healthcare system demands the denial of some illnesses and they produce the evidence to support that.

Deception and self-deception is the norm in the so-called research on functional disorders, because the truth must be continuously distorted to the desired results. The appearance of the whole machine of oppression having a scientific foundation is essential to its continued operation.
 
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Just to clarify that this grant funding isn't related to the European ME/CFS petition and resolution. Rosmalen also wasn't one of the signees of our open letter. Evelien had specified that the ME research her petition advocates for should be biomedical and use strict criteria such as the Canadian and International Consensus Criteria, see: https://europeanmecoalition.com/wp-content/uploads/2020/05/Research-Requirements.pdf

Will try to find out more about Rosmalen's funding. Perhaps it's related to the Lifelines study she has worked on, a large Dutch cohort this followed up over time (see for example here: https://www.rug.nl/research/portal/...ia(feeac05e-d4fb-4832-9c95-5f5a41d4f383).html)
 
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Shame!

The functional disorders paradigm exists to oppress people with difficult health problems because it's designed to prevent them receiving adequate investigation and care. It's also designed to allow doctors to abandon patients in good conscience. Under the superficial appearance of care, patients are cruelly neglected.

These so called researchers keep this system running. I wonder if they are aware what they're doing, or if they're merely mindless cogs in the system, doing what they are pressured to do by the healthcare system. The healthcare system demands the denial of some illnesses and they produce the evidence to support that.

Deception and self-deception is the norm in the so-called research on functional disorders, because the truth must be continuously distorted to the desired results. The appearance of the whole machine of oppression having a scientific foundation is essential to its continued operation.

I wonder if they believe in it because a friend of a friend of their sister's hairdresser was cured?
 
The functional disorders paradigm exists to oppress people with difficult health problems because it's designed to prevent them receiving adequate investigation and care. It's also designed to allow doctors to abandon patients in good conscience. Under the superficial appearance of care, patients are cruelly neglected.
It's the God of the gaps for medicine.
 
Perhaps it's related to the Lifelines study she has worked on, a large Dutch cohort this followed up over time (see for example here
Apparently not.

It looks like the money is going to an Innovative Training Network (ITN) which falls under the Marie Skłodowska-Curie Actions intended to promote interdisciplinary research and international collaborations. The project is called ETUDE, Encompassing Training in fUnctional Disorders across Europe, and will be coordinated by the academic hospital in Groningen, The Netherlands.

More info here: https://www.umcg.nl/NL/UMCG/Nieuws/...voor-vijf-grote-onderzoeksprojecten-umcg.aspx

and here: https://ec.europa.eu/research/marie...es/itn_2020_list_of_projects_main_final_0.pdf
 
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Merged thread

This project is recruiting patients to take part in a survey.

https://etude-itn.eu/

https://www.euronet-soma.eu/itn/etude/

It looks like the usual attempt to trick patients into taking part of something that is against their interests.Here's an overview of the work:

Work package 1: Mechanisms underlying the development of functional disorders

WP 1 is focused on mechanisms underlying the development of FD, and will go beyond the traditional discipline-specific diagnoses that artificially divide the research field. Within this theme, four PhD students will develop new insights into transdiagnostic mechanisms, which will inform new diagnostic methods or products and identify treatment targets.

ESR 1: Symptom perception as a transdiagnostic mechanism underlying FD (Johannes Gutenberg-University Mainz, Germany; Supervisor: Prof. Michael Witthöft)

ESR 2: Sensory-motor processing as a transdiagnostic mechanism underlying FD (Technische Universität München, Germany; Supervisor: Prof. Nadine Lehnen)

ESR 3: Dysfunctional Breathing as a transdiagnostic mechanism underlying FD (Wroclaw Medical University, Poland; Supervisor: Prof. Joanna Rymaszewska)

ESR 4: Developmental transdiagnostic mechanisms underlying FD (Aarhus University Hospital, Denmark; Supervisor: Prof. Charlotte Rask)



Work package 2: Diagnosis of Functional Disorders

WP 2 is focused on diagnosis of FD, and will involve three PhD students who will study predictive validity of diagnostic criteria. Their aim is to improve the current symptom-based diagnostic criteria that are insufficiently validated, and to simultaneously establish a basis for future improvements of diagnostic criteria.

ESR 5: Predictive validity of diagnostic criteria of FD used in mental health care (University Medical Center Hamburg-Eppendorf, Germany; Supervisor: Prof. Bernd Löwe)

ESR 6: Predictive validity of diagnostic criteria of FD used in somatic health care (University Medical Center Groningen, The Netherlands; Supervisor: Prof. Judith Rosmalen)

ESR 7: Predictive validity of diagnostic criteria of FD used in primary care (Radboud University Medical Center Nijmegen, The Netherlands; Supervisor: Dr. Tim Olde Hartman)



Work package 3: Treatment of Functional Disorders

WP 3 is focused on treatment of FD, and aims to inform evidence-based European recommendations on treatment and health care for patients with FD that include content as well as organization of care for FD. The five PhD students will collectively provide the first encompassing overview of health care for FD across Europe, and will improve care for FD by developing specific products, services and new modes of delivery, and indicators to evaluate them.

ESR 8: Effective treatment for FD across diagnoses and disciplines (University of Florence, Italy; Supervisor: Prof. Fiammetta Cosci)

ESR 9: Health Care Related Factors of Somatic Symptom Persistence across Europe (University Medical Center Hamburg-Eppendorf, Germany; Supervisor: Prof. Bernd Löwe)

ESR 10: Patient-centred eHealth as an accessible first step intervention for FD (Aarhus University Hospital, Denmark; Supervisor: Dr. Lisbeth Frostholm)

ESR 11: Treatment for FD patients with functional cognitive symptoms (University of Edinburgh, UK; Supervisor: Prof. Alan Carson)

ESR 12: Collaborative care networks for FD (Dimence Mental Health Care, The Netherlands; Supervisor: Prof. Judith Rosmalen). This PhD position is linked to the University of Groningen (the Netherlands).



Work package 4: Stigma associated with Functional Disorders

WP 4 is focused on the stigma that patients with FD meet, both from health care professionals as well as from other patients and the general society. Collectively, the three PhD students in this work package will study stigma, and develop and evaluate methods and products to reduce it.

ESR 13: Negative attitudes in health care professionals: occurrence and interventions (Radboud University Medical Center Nijmegen, The Netherlands; Supervisor: Dr. Tim Olde Hartman)

ESR 14: Providing acceptable patient-centred explanations for FD (University of Sheffield, UK; Supervisor: Prof. Chris Burton)

ESR 15: Online and offline stigma for FD in the general population: occurrence and interventions (University of Edinburgh, UK; Supervisor: Prof. Jon Stone)

More information on ETUDE partners and individual ESR projects can be found at https://www.euronet-soma.eu/itn/
 
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Funding page for the project, https://cordis.europa.eu/project/id/956673

"A new era in functional disorders research
Functional disorders (FD) comprise conditions with chronic somatic symptoms that cannot however be associated with specific pathophysiological mechanisms. Although FD affect nearly 7 % of the population, imposing a high socioeconomic burden, the way different medical specialities conceive these disorders leads to fragmented and insufficient health care for patients. The EU-funded ETUDE project aims to address this problem by offering a sustainable and structured training programme to early-stage researchers. By educating the new generation of scientists to work across disciplines, the project will provide the skills to develop products and services that improve care for FD patients."

"Objective

Functional Disorders (FD) are clusters of chronic somatic symptoms that currently cannot be associated to reproducibly observable pathophysiological mechanisms. FD can affect every organ system, individuals of all ages, ethnic groups and socioeconomic strata, although the risk is increased in women and lower socioeconomic strata. Women are 9 times more likely to receive an FD diagnosis, even after adjustment for the severity of symptoms. Functional limitations are as severe in FD as in well-defined chronic physical diseases. Direct medical costs and indirect costs as a consequence of sick leave and disability are high. FD cause relevant annual excess costs in health care that are comparable to mental health problems like depression or anxiety disorders, and which may be reduced by interventions targeting physicians as well as patients. About 7% of the population is affected to such a degree that they qualify for psychiatric treatment. However, this remains hidden due to diagnostic practices that vary between fields.

Psychosomatic medicine, clinical psychology and medical specialties all have their own and different concepts of FD having important consequences for patients. These challenges result in a lack of knowledge on FD, leading to fragmented and insufficient health care for patients with FD, and a society in which patients with FD experience stigma from both the society as well as from health care professionals. There is an urgent need to solve the fragmented and insufficient education and research landscape.

Therefore, the goal of ETUDE is the development of a sustainable and structured training programme in order to educate a new generation of interdisciplinary creative early stage researchers that are able to cross disciplines and to translate theory and experimental models to products and services that improve care for patients."
 
Does this fill you with despair?

The whole thing seems to be based on the premise that all so called functional symptoms are psychosomatic, and therefore all conditions and syndromes which don't currently have a proven biological basis can be lumped together. In treatment terms this leads to the assumption that a generic psychological treatment will be appropriate, no doubt some variation on CBT of the brainwashing variety, and healthy living - diet, exercise, sleep hygiene, positive thoughts etc.

We'll all be signed up for generic treatment apps that make a few psychologists a shed load of money, and told to stop pestering our doctors and go back to work.
 
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Yes it fills me with despair. Just look at this immensely stupid circular logic here:

By definition, unexplained persistent symptoms can only be assessed by measuring the perception of symptoms.
These geniuses have decided that symptom perception may be the mechanism by which unexplained persistent symptoms are being caused.
Judging from past work, this is because they have "discovered" a really high correlation between changes in perception of symptoms and changes in perception of symptoms (by some other name). Or something similar. Astonishing stuff.

It looks like an inability to have any self-awareness or internal quality control of rational thought. But maybe that's why these people, extrapolating from themselves to others, suspect psychosomatic illness in others.
 
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Also I'm horrified by what treatments that manipulate the perception of symptoms will do to fragile patients. Getting a person to deny their own lived reality is a form of psychological abuse.

It's obvious the true goal is not to help patients but to oppress them, and make them less of a burden on the healthcare and social system. Because patients that don't believe they have a serious problem will not seek help, or will not seek or campaign for medical treatments, and instead might be content with talking to a friendly therapist every now and then or just even just using an app for a while before feeling completely alienated and abandoned and giving up. Horrific stuff.
 
How do you validate predictive value of symptom based disease criteria when the disease is only defined by sets of symptoms? Inevitably different lists of symptoms will select different groups of patients. Valid for predicting what?

I forsee yet more questionnaires, correlations that just show the questionnaires have overlapping questions being used to make silly assumptions, new names and categorisation of subgroups to add to the overcrowded and meaningless list that includes MUS, FND, FD, SSD, BDD, and probably XYZ and WTF.
 
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