The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

The Norwegian GWAS included 2532 patients and did not identify any risk loci for ME/CFS. https://www.sciencedirect.com/science/article/pii/S0889159122000782

I recall that @Simon M and @Chris Ponting wrote a comment about the paper that underlined the need for much larger sample sizes (i.e. DecodeME), so I’m surprised that ZonMw deemed the ME/CFS Lifelines cohort to be fit for a GWAS — though it could well be for other projects.

Edit: of course, this GWAS can add to the sample size of DecodeME as well as the Norwegian cohorts. It would be useful if the genetic testing follows the same protocol in this case. Perhaps this is what ZonMw has in mind.

 

We need a similar switch Crawley > Ponting, Rosmalen > someone not MUPS/CBT/Fink/Sharpe/Wessely etc. related.

 

On top of someone with the right biomedical background, they have to have the humility to listen to patients and have faith in their expertise and input.

 

Already a world-class discovery at ME/CFS Lines?

"In 2018, Lifelines included data and biomaterials from 2,500 participants with ME/CFS; since then, another 400 participants have developed ME/CFS.

This does raise some questions.

1. According to the 2005 Dutch Health Council report, the number of people with ME/CFS in the Netherlands was estimated at 30,000 to 40,000. The Health Council committee in 2018, which included Professor Rosmalen, saw no reason to arrive at a different estimate[1]

.
A systematic review by Lim and others in 2020 came to a prevalence of 0.89% (including those younger than 18 years) if the CDC 94 criteria are used. These are very broad criteria. The CDC discarded their criteria and replaced them with the more stringent IOM criteria. Converted to the entire Dutch population, that would come out to 158,420 patients, about four times the Dutch Health Council’s estimate

Looking at the people identified as ME/CFS patients in Lifelines were the participants are 18 years or older, it is notable that in 2018 the number of people with ME/CFS was 2,500, and in the next scarcely four years another 400 were added. So that’s a total of 2,900 people suffering with ME/CFS out of a population of 167,000. That would mean a prevalence of 1.74% in the adult population."

https://meglobalchronicle.wordpress.com/2023/04/26/already-a-world-class-discovery-at-me-cfs-lines/

 

Amsterdam UMC leads international consortium in search of chronic fatigue treatment

full article here
https://www.uva.nl/en/content/news/...n-search-of-chronic-fatigue-treatment.html?cb

 

And "developer of Grip eHealth toolbox for persisting physical complaints" is also still part of her professional profile at Groningen University.

(Since 2021 she's also leading a project against "stigmatisation" of people with MUS/functional disorders.)

Her promotion from council member (when Sharpe was vice president) to vice president of the European Association of Psychosomatic Medicine (EAPM) is also recent.
And to repeat,

Spoiler: This is the mission and vision of that organisation

Mission & Vision of the EAPM
European Association of Psychosomatic Medicine
The primary objectives of the EAPM are:

• To promote an integrated psychosomatic (biopsychosocial) approach to health and disease.
• To promote the treatment and care of patients with psychiatric disorders and psychological problems in patients with or without physical disorders in general hospitals, medical clinics, other community out-patient clinics and primary care.
• To stimulate and support research in the areas of Psychosomatic Medicine, Consultation-Liaison Psychiatry, and Integrated Care.
• To stimulate and support teaching and training, and advanced professional education in the areas of Psychosomatic Medicine, Consultation-Liaison Psychiatry, and Integrated Care.
• To foster interaction and collegiality among members of the Association and provide opportunities for mutual support and assistance.
• To educate the patients, carers and the general public regarding Psychosomatic Medicine.
• To provide a forum for the presentation, dissemination and discussion of scientific problems in Psychosomatic Medicine, Consultation-Liaison Psychiatry, and Integrated Care through the organization of meetings, conferences, workshops and publications.
• To advise national and European organizations and to encourage and stimulate the formation of local, regional and national organizations which further the goals of the Association
• To identify and reward outstanding achievement and/or service in Psychosomatic Medicine, Consultation-Liaison Psychiatry, and Integrated Care.

She developed the questionnaire to aid in diagnosing somatic symptom disorders (with Knoop) where ME patients are tabeled as having "movement anxiety", an unhealthy focus on their physical complaints, "dysfunctional complaint coping", "catastofising", "low self-efficiency", "lack of acceptation of their complaints and additional limitations", and "helplessness" (which is "emphasising the negative meaning of complaints") and is the same-old well-known disableist bullshit, now however with a twist that is meant to facilitate the dutch goal of expanding the CBT industry beyond the borders of "unexplained" illnesses and help it survive growing biomedical finds for those previously labeled "unexplained" by them.:

"Characteristic of the somatic symptom disorder is the prolonged presence of one or more physical complaints that cause suffering and/or significantly influence daily functioning. In addition, there needs to be a presence of excessive thoughts, feelings, and behaviors related to the physical complaints........For diagnosis [of somatic symptom disorder] it is not relevant whether or not the complaints can be explained by a somatic condition; of importance is the maladaptive response to physical complaints."

So you are very sick and disabled, but abled, non-experienced mr/mrs PsychosomaticRulez is going to declare your thoughts, feelings or behaviour related to your disability "excessive". (Hey, guess who is going to provide your treatment and what it will be?)

The dutch bps-ers/CBT lobby seem to be betting on two horses to keep going:

Spoiler: neigh

• producing/proving what they lack: demonstrating that vague psycho-things like "thoughts", "focus" and "stress" can actually lead to a physical change causing disabling illness or at least a chunk of it that they can claim as territory (so far it's been rather phase 2 of the underpants gnomes - phase 1: Stress/thoughts, phase: 2 ???, phase 3: disabling illness) and this is what I worry about with Rosmalen's involvement in the biomedical research for ME as stated in my earlier post.

This goal is basically trying to prove the 100+ year old and as yet unproven psychiatric claim that psyche can directly and significantly create changes in the body in such a severity that it creates disability. And that stems from misogyny, health supremacy and the age-old disableism that chronic illness is created by flaws in the patient's behaviour and "character"/resilience, only now it is pursued for industry interests.​

• Not particularly resisting biomedical finds (but also not emphasising them unless they fit the first point), naming ME "just like other illnesses" but with a dominant narrative that patients are still predominantely ruled by psychiatric disorder, having a "maladaptive response to physical complaints". (So whatever the illness, it's still also their territory, let's CBT!)

It's important that advocates abroad pick up on this, that what the dutch are doing is taking a next step to ensure the CBT industry and "psychosomatic medicine", which anchor their involvement and position in medicine, keeps going and can expand.

Here is Rosmalen speaking at a conference about "patients with functional/medically unexplained symptoms" alongside Sharpe and Chalder.
(And I saved the link, but she removed the tweets where she repeatedly insists that ME is a functional disorder in an interaction with Mark Vink on Twitter in - I believe- 2021.)

I'm sorry this got longer again, but I wanted to add some more links and again emphasise that, despite her public utterances, she is a substantial motor behind keeping ME seen as a psychosomatic disorder/MUS/functional disorder, and a prominent figure in the psychosomatic/MUS/FD movement. Her project getting grant money earmarked for biomedical research into ME, and her leading a portion it, should be seen in this light and can not be brushed aside as just not being happy with one person involved. The same goes for the use of her database. (I see Andy already posted the good article by The ME Global Chronicle )

To my knowledge The Netherlands in general never had any interest whatsoever in solidly diagnosing and and selecting ME patients (diagnosis is discouraged or everything "fatigued" is put in the same CFS bin which is seen as a synonym for MUS) and it takes a big leap of faith from me to trust that precisely the lady who is up to her eyeballs in psychosomatics and collaboration with Sharpe, Knoop, Wessely etc. will have kept a ME patient database that neatly adheres to IOM criteria.



Edit: some cutting and spoilering so it's less of a wall of text

 

ps: The dutch originals for translated pages above:

prof. dr. J.G.M. (Judith) Rosmalen | Waar vindt u ons | Zoek een medewerker | Rijksuniversiteit Groningen (rug.nl) (Rosmalen RUG staff page with her discipline, expertise and functions)

ETUDE: Europees project tegen stigmatisering van SOLK - De Bagagedrager (Rosmalen leading project against "stigmatisation" of MUS/FD)

 

Yeah, just heard about it yesterday. Pretty awful...

 

What is known about Dr. Cindy Boer, who is listed as leading the genetics investigation section?

 

Not much. She's new to the mix and working together with Rosmalen. She's a postdoctoral researcher at Erasmus MC. That's all I know. It could be interesting.

They forgot to mention PEM as a symptom in their article. She still has got some learning to do about the condition. That being said, Rosmalen forgot PEM in her long-COVID Lifelines study as well even though she was 2 years part of the Dutch Health Council in 2018 that made PEM a mandatory symptom. So maybe it's of no surprise really.

https://amazingerasmusmc.nl/genetica/licht-in-de-zwarte-doos-die-me-cvs-heet/

 

If Rosmalen is in charge of "educating" her then it paints a grim picture for the future of that particular researcher.

 

For anybody interested here is her Researchgate profile, https://www.researchgate.net/profile/Cindy-Boer

 

I'm not at home in this, but as an aside, isn't it also weird that, according to the article: "Lifelines contains the data of 167,000 people. According to the Lifelines website, those data are representative of the whole population: (…) These findings indicate that the risk of selection bias is low and that risk estimates in Lifelines can be generalised to the general population."?

Can you say that those findings represent the whole population? When those findings are collected in just three provinces (Groningen, Drenthe, Friesland) that have just 10% of the population, that are geographically concentrated at the top of the country, outside major urban areas, while they also have much lower population density than the rest of the country? (And are for example also out of the way of notorious polluters like Rotterdam Maasvlakte & harbour, Tata steel in Ijmuiden, intense livestock keeping in Brabant, major road clusters, etc. And also will have a different population buildup on several factors, like for example less people who are black or muslim, who generally tend to live more in urban areas like the Randstad.).

 

Funding Rosmalen is a disgraceful waste of funding, the more I read though, the more I feel that that's in line with the entire Lifelines-project.

 

Depends. Yes, it's pretty horrible that someone with this position gets their project funded out of funds meant for biomedical research into ME.

But it also means she can't hide: it's glaringly obvious what her position is, even though she positions herself as a caring researcher.

Her history is clearly deep into the psychosomatic/MUS/FD movement, she was part of the EAPM, and after witnessing this in 2019 at the EAPM meeting she didn't get out, tell Sharpe to put a sock in it and criticise this science-denying tripe for what it is, nope, she decided that this organisation under the leadership of this bloke was the place for her, and that she wanted to support his presidency and the EAPM goals as vice president. (And no wonder, as Sharpe is referencing her as agreeing with the views he spews here).

And in this situation that is useful as she can't pretend to just be marginally involved.

 

The BPS crowd always want to “destigmatize” their psychosomatic labels. However, they aren’t challenging their own assertions that patients are helpless, catastrophizers, neurotics, etc. They merely mean that others shouldn’t be hostile toward the neurotics. It’s a really problematic game, and should be blatantly obvious to patients. For whatever reason, I’ve seen some prominent FND patient accounts on social media that seem to view these types of destigmatizing campaigns favorably.

 

Well, if I may get very cynical for a moment then I'd say that funding population studies based on an area out of the way of major polluters would be a rather good investment for a VVD government unkeen on putting pesky regulations on industry (like pollution limits).

(Coincidentally, our health minister came for a visit last month.)

 

An aside, but I am now temporarily mesmerized by the notion of Lifeline's giant poop container;
it is out there, holding 2500 kilos of poop, and it's someones job to do gpc-maintenance.

The unglamourous (but important) backstage life of research.

 

Trial By Error: Dutch Agency Awards Big Biomedical ME/CFS Grant to Judith Rosmalen, Professor of Psychosomatic Medicine

https://virology.ws/2023/04/26/trial-by-error-dutch-agency-awards-big-biomedical-me-cfs-grant-to-judith-rosmalen-professor-of-psychosomatic-medicine/

Thank you @dave30th

 

Have details about the funded projects not yet been released? Because I can't see them.