ETUDE: Encompassing Training in fUnctional Disorders across Europe

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:

 

Currently 144 comments on this in Dutch on the Facebook page:

 

What a waste of 4 million Euros.

 

I replied with this. Google translated.

I'm not a fan of her work

 

At least if they remove the stigma it might prevent reproduction of the more florid excesses.

 

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.

 

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)

 

I wonder if they believe in it because a friend of a friend of their sister's hairdresser was cured?

 

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

 

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/

 

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."

 

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.

 

I'm surprised that they openly admit this
"Their aim is to improve the current symptom-based diagnostic criteria that are insufficiently validated"

 

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.