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

Why is it so hard for these organizations to do the right thing even after they've already committed to doing so?

 

Politics. As long as the issue is politicized and our needs conflict with their intent, we will be crushed. Until we aren't.

If it can happen for peptic ulcers, it can happen to any disease. But until the breakthrough, it's all politics all the time. We need something. They want the opposite. They're in charge. We have zero influence. This is all politics. Similar reasons to a tiny country lodged between two giant warring empires. We just don't register in their priorities, unless we make some noise, and then it's crushing time.

 

Doesn't look good but it is hard to judge when we don't have info about what has been decided.

ZonMw told the patient organisations that on Tuesday 25 April they will announce their funding decision so we will know more soon.

https://twitter.com/user/status/1649030064531468289

 

Trial By Error: Dutch Agency to Announce ME/CFS Research Awards After Committee Resignation of Key Patient Advocate

"The funding to be announced tomorrow is for the first round.of awards. Proposals were due by April of last year. But the process of assessing the proposals has experienced some hiccups. Last July, ZonMw posted an update about an “adjustment” to the process of evaluating proposals. According to the update, key patient representatives would not participate in decision-making about funding recipients because of their perceived conflicts of interest.

.....

Subsequently, ZonMw delayed the announcement of its grant decisions, first to December of last year and then till late April. However, on April 13th, one of the sounding-board group members—Lou Corsius, a longtime patient advocate with a severely ill daughter—publicly announced his resignation, posting the following statement on social media:"

https://virology.ws/2023/04/24/tria...ommittee-resignation-of-key-patient-advocate/

 

First biomedical research on ME/CFS starts

"Soon 10 projects, within 2 consortia, will start with biomedical research into the disease ME/CFS. They receive funding from the ZonMw research program ME/CFS, which focuses on research into the causes, diagnosis and treatment of the disease. With the start of the projects, a foundation is laid for a solid and sustainable research infrastructure for ME/CFS in the Netherlands.
Important within the program is the collaboration between different research disciplines, international research groups, different professional groups, clinics and patients. This is how the program ensures impact : improving the treatment, quality of life and social position of ME/CFS patients.

2 consortia, 10 sub-projects
For the first funding round of the research programme, researchers were given the opportunity to submit a proposal to set up a consortium, or collaboration. In the consortia, the parties work together to carry out thorough biomedical research into ME/CFS. 2 consortium applications have been awarded. These are:

• ME/CFS Lines : A multidisciplinary consortium and biobank to unravel the root cause of ME/CFS in Lifelines
• The Dutch ME/CFS Cohort and Biobank (NMCB) consortium: a national infrastructure for ME/CFS biomedical research

4 sub-projects are being carried out in the ME/CFS Lines consortium , 6 sub-studies are starting in the NMCB consortium. These research projects each last 4 years. The consortia, which manage the biobanks, among other things, will be financed for the next 8 years. A total amount of 11.6 million euros has been allocated to the sub-projects and consortia. This concerns (rounded off) 7.2 million euros for the NMCB consortium (including sub-projects) and 4.4 million euros for ME/CFS Lines (including sub-projects)."

https://www.zonmw.nl/nl/nieuws/eerste-biomedisch-onderzoek-naar-mecvs-van-start

 

Is it possible that patients are being pushed out and ignored?

 

Judith Rosmalen is appointed as one of the leads. I'm just gonna leave it at that because I'm fuming atm.

 

Message from the ME/CFS Association about the subsidies awarded:

Satisfied and critical
We are satisfied with the funding of the NMCB consortium's applications. We are surprised and concerned that the application for a second biobank, from the ME/CFS Lines consortium, has been approved. Surprised because the research agenda and the research program mention one biobank and data registration. Concerned, as we have many questions about this second biobank/data registry's method of selecting patients for it, which seems to lack sufficient clinical experience with ME/CFS patients. This can seriously detract from the quality of ME/CFS Lines studies. We were not involved in the preparation of this second consortium and, despite our questions, we received too little information to be able to assess the sub-studies within this consortium.

https://www.linkedin.com/feed/update/urn:li:share:7056550765863018496/

 

Judith Rosmalen will receive a good chunk of that money.

Specialised in psychosomatics/MUS/"functional" syndromes, close collaborator with Sharpe, Knoop,Wessely and Chalder, vice president of the European Association of Psychosomatic Medicine (President Michael Sharpe, vice secretary Per Fink), whose explicit mission it is to promote a psychosomatic approach to health and disease and research and organizations supporting that, president of NALK, the network of persisting symptoms (ALK is the dutch MUS), it looks pretty obvious to me where this is going, especially given the context.

The dutch branch of the bps movement wants to broadly expand the application of its ideology beyond "controversial" illnesses to accepted ones like MS, cancer, and preferably everything (disturbingly I saw a kidney patient organisation promoting Knoop's CBT for their patients yesterday* - things are moving), and I hope I'm just plain wrong, but to me Rosmalen's project being funded means funding for something that wants to Trojan-horse psychosomatics into biomedical research.

Rosmalen's in a big dutch newspaper today, in a Long COVID article, again calling for "expertise centers" for people with "complex complaints", and I have no doubt the treatment she envisions there will be along the lines of their ideology, what they so misleadingly call 'holistic'.


I can't comment on the quality of the studies of the ME/CFS Lines consortium themselves, but I do not like their context one bit. I'm also a bit hesitant about the ME/CVS Stichting representatives being the sole ones involved into the studies patient-wise. (I do not trust the ME/CVS Stichting to be a knowledgeable, strong and active advocate for ME patients, unless they have changed.)

And I'm also alarmed by a study in the NMCB consortium using the term "PIFS" (which is exacly the term and what Wessely and Knoop want to revive as an umbrella term for ME/CFS, Lyme, Qfever and such, using a term from the Oxford criteria)


Sorry I'm being so negative - I don't want to be. It's great that research is being done, and I'm interested to know what you think of the actual content of these studies, and their methodology.

But due to my experience with The Netherland's track record, current events, and the habits of its politics, I have some distrust that this will be a triumph for solid and useful biomedical research into ME/CFS, and I fear that this budget yet again has been diverted (at least partially) from where it would have been of best use, and sent to studies that further the goals of the EAPM, Rosmalen, Knoop (and also e.g. insurance companies that want to make care "cheaper") and the rest of the bps movement that will muddle the water for years to come. (e.g. the brain auopsy study is looking at "the stress system", the microbiome study looking at diet and lifestyle: in itself fine to research, but is this the thing to focus on now for ME/CFS to be understood? I'm going to assume that the researchers are aiming at honest and solid studies, but even so, I'd really like people to keep a good eye on the methodology and conclusions, particularly in the case of bps-convenient outcomes.)

The fact that Rosmalen, who I consider a wolf in sheep's clothing, is involved is really bad.


I hope I'm übersupermegawrong, and that this is the start of a series of solid studies with interesting and useful results, but it sits very uneasy with me at the moment.



*(Dutch text kidney patient organization promoting Knoop's CBT)

 

I suspect the controversy is mainly about Rosmalen being one of the leaders as she was interested in a psychosomatic interpretation of ME/CFS in the (recent) past.

I do think that her Lifelines cohort forms an exceptional opportunity because it includes longitudinal data of people before they got sick. The research projects of this consortium also look quite interesting and focused on biomedical hypotheses.

I think it all looks quite good on paper, let's hope it will all be effective in practice as well.

 

One of the Rosmalen-group research projects aims to do a GWAS with a worldwide collaboration. I wonder if they have been in touch with the DecodeME team about this? @Andy
https://projecten.zonmw.nl/nl/project/mecvs-genetica-onderzoek-naar-de-biologische-oorzaak

Another project will try to collect and autopsy brain tissue of ME/CFS patients, sounds interesting:
https://projecten.zonmw.nl/nl/project/hersenveranderingen-mecvs-focus-op-het-stress-en-immuunsysteem

Yet another project will compare ME/CFS with other post-infectious syndromes. It seems that this will be a collaboration with COFFI, so one to keep an eye on.
https://projecten.zonmw.nl/nl/proje...immunologische-vergelijking-van-mecvs-en-pivs

 

I've got no hope whatsoever with Rosmalen in charge. I've been thinking how to respond to that in a way that's not overly dramatic, but this is just a slap in the face of every ME-patient.

 

The psychosomatics appear to be trending toward the ‘inability to handle stress’ hypothesis, if they’re not already fully immersed in it. I recall a paper by Fink in which he discusses a lack of resiliency as a potential unifying theme in his pet ‘bodily distress disorder.’ It strains credulity to imagine something that would make ME patients less popular, but branding them as those unable to handle the stressors of daily living could actually achieve that ignominious end.

This is hardly novel however. It was an early and consistent theme in neurasthenia literature.

 

I'm quite happy with the Amsterdam group but I agree with what @Arvo wrote. I'm also very hesitant to get really excited about the group in Groningen. Most research looks pretty good on paper, but we need more information on what and who's involved. Also the Lifelines cohort is based on the Fukuda criteria.

http://wiki.lifelines.nl/doku.php?id=fatigue_cdc&s=09&utm_source=pocket_mylist

The Lifelines could be interesting, but thus far they've yielded very little of interesting result. Let's see where this will take us. The controversies are very much about Rosmalen who promoted CBT for CFS. Which she's still not opposed to and obviously being all happy with Michael Sharpe.

See here. Curative CBT for all (2018):



Here's the informative movie they're referring to:

https://www.youtube.com/watch?v=L--l4Ueb_U0

Sharpe is just amazing (2022):

https://www.youtube.com/watch?v=BN4i6QLX6qg

Even if the research will be good this lady has some really issues with her moral compass and people need to take that aspect also in account. I just can't recommend her.

 

They have been in contact with us, and we are planning to talk with them further about whether and how we can work together in the future.

"Lifelines is the only population cohort and biobank worldwide to map diagnostic criteria for ME/CFS. In 2018, 2,500 Lifelines participants met CDC criteria for ME/CFS. Since then there have been at least another 400 people who have developed ME/CFS within the Lifelines cohort. In addition to the CDC, the IOM, ICC and CCC criteria sets will also be mapped out for these participants, after which they will be related to various biomedical mechanisms in sub-projects. Because biomaterial is available from both before and after the development of ME/CFS from a subset of participants, this creates a unique opportunity to study the development of the disease."

https://projecten.zonmw.nl/nl/project/mecfs-lines-consortium

 

I sincerely hope you will not...

Yes they will. Emphasis on will. They have not yet been.