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

"DUTCH ZONMW RESEARCH PROGRAMME LAUNCHED

One of the topics discussed in News from the Netherlands in this issue is the approval of a 10 year Biomedical Research Program with a subsidy of € 28,5 million.

Just before releasing this issue, Dutch ZonMW – who executes the programme and compiled its text – published the first call.

Below are the main elements of it, a very important one being the obligation to cooperate with foreign research consortiums. The total budget is not less than € 10 million.

On December 16, 2021 the first call of the ZonMw research programme was opened.

The text reads:

The call is intended for research consortia, who can apply for funding to support their collaboration and conduct research on ME/CFS. The deadline is March 1, 2022."

https://mecentraal.wordpress.com/2021/12/16/-dutch-zonmw-research-programme-launched/

For the announcement of the funding awards go to post #26

 

This first call is mainly focused on developing a patient registration and biobank. Everything looks ok, collaboration with patient representatives is an important criterium. Hope there were will be some good applications.

The full text of the call is available (in Dutch) here: https://www.zonmw.nl/fileadmin/zonm...dieoproep_consortia_cohortonderzoek_mecvs.pdf

 

Looks good and coherent. Patient registry and biobank, emphasis on international collaboration (important as that tiny budget is not nearly enough to move anything, but it can leverage so much by being smart about it), patient involvement at all levels, some mention of epigenetics, which is nice as I don't think it's been done yet.

The language of equal right is important, this is good:

By ‘involve’ we mean that stakeholders are consulted with, advice is obtained from them, collaboration with them takes place and/or an equal right is accorded to them to participate in the (joint) project decision-making process.​

Frames Long Covid as a subset of ME, with other cohorts like Q fever and Lyme disease.

Workshops to be held in autumn 2022, after awarding funds but before the projects start collecting data.

First round is €10M divided by 2 to 4 consortia. Explicitly opens the door for additional funding if warranted, not stopping at phase 1 results that just sit there.

Interesting, I guess they expect international collaboration to be fundamental to the whole project:

Please write your proposal in English, as foreign referees will assess your proposal.​

Lots of ways execution can make this worse but as plans go, this is a plan. It was even thought out, which is nice.

 

So, given the advisory report cited as a reason for this call was published 2018, and it was not until Dec 2021 that the call was posted, is it possible the new NICE guideline may have helped it gain traction? Or was it going to happen in this timescale anyway?

And without the NICE guideline would this call necessarily have had the biomedical direction that it has? The original advisory did not seem to make any mention of it, though I've only had a quick skim.

 

My understanding is that the proposals must be from organizations in the Netherlands, and the named collaborators must also be from the Netherlands.

It's worded so that it might allow collaborators from other countries under specific circumstances.

The request to write the proposal in English is probably so that it can be peer reviewed by people from outside the Netherlands.

It looks like the kind of serious research that we need to make progress. I'm impressed, although it's moving too slowly.

 

The Dutch health council report stated that the previous funding of 1,9 million went to behavioural interventions and creating a multidisciplinary guideline (which was CBT/GET NICE guidelines 2007 based). So they adviced for biomedical research. So this was already planned way before the NICE guidelines 2021 publication.

 

I hope there are enough researchers to make applications (which are deemed good quality) to ensure all the money is used. A lack of private money for research can mean there is a lack of researchers in a field to make applications.

 

Not the NICE guideline, but the persistent work of Dutch patient representatives, who were heard by several biomedical researchers and ZonMW, led to this result. The next challenge is: will there be enough qualitatively good research proposals? There are currently almost no researchers in the Netherlands with ME/CFS expertise.

 

Disease specific expertise is important for diagnosis and treatment (if there is any) but for research, competence in the research method is what counts. ME/CFS research badly needs a much more expanded pool of research interest across all medical specialisms so I would see the Netherlands situation as an excellent opportunity to widen the field. There's still much basic work to be done - not least solid epidemiology to understand who the patient population is and what its health, education and care challenges are.

 

And from what I understand, researchers are asked to consult with patient representatives about their research and I think that probably helps the situation a lot even if someone hasn't got a lot of experience in this field yet.

And for example in Hungary, there has never been any biomedical ME/CFS research I know of (or literally anyone who has a decent understanding of it). Then here comes long covid and the first couple of planned studies that managed to get funding for LC research seem surprisingly good (immunology, (epi)genetics, microglia, etc), I expected much worse. So I think it is worth waiting to see if the money actually draws some refreshing new people to the field that we desperately need or indeed it will be a waste of resources. I really hope not though.

 

The Dutch researchprogram is indeed an excellent opportunity to inspire more biomedical scientists to do ME/CFS-research.

 

And there’s nothing like a big pot of money – in this case about £25 million – to get the attention of researchers from outside the field.

 

I know it was planned before, but weren't they waiting for the NICE guideline to be published to finalize things? I vaguely remember something like that, but wouldn't know where to look for verification. It's good that money is being freed up for biomedical research, let's hope it goes to the right people. Looks promising.

Also, imagine if other countries would follow this road with the same approximate amount of money per capita involved, it would be a sea-change for us sufferers.

 

It would certainly be a sea change in perception of patients - positive messaging from biomed sources etc. How far the tide will have shifted is a function of how big the problem is and we still have no idea what it is going to take to even get a half good picture of what ME/CFS is. We have to applaud every small step taken by scientists administrators and politicians, but we also need to keep in view just how big the mountain that is ME/CFS may really be.

 

Not that I have heard of.

 

Same organization, uh?

Explicitly making Long Covid about mental health and seems to be some program about resilience and happiness in dealing with symptoms. Or whatever.


https://twitter.com/user/status/1531636648668286977


I think the same government recently refused to do anything medically relevant, no funding for research or clinics, because they're already doing so much. In most professions saying that "0 = a lot" gets you fired. There's politics, and not much else. In business lies always catch up eventually because investors have actual enforceable rights with functioning mechanisms. Unlike patients.

 

The tweet is no longer there but it wouldn't surprise me. Patient representatives had to go to hell and back to achieve what they did on M.E. with institutes actively working against them. Long Covid-patients aren't yet organized to the degree the group we had fighting our corner was. I used to visit Dutch M.E.-forums and followed a bit of what they did in the early days and I haven't seen much groups that where so on the ball as these people were. There had been previous attempts to get recognition but ultimately they all failed because of a lack of organization, important people dropping out or whatever, this group didn't only manage to get recognition, they managed to get a significant chunk of funding.

I think talking about politics on this forum is generally frowned upon, else I could get a bit more into it but the people in charge for the last 4 or 5 cycles, maybe more, have been all about gutting our healthcare, safety nets and more.

 

Some worrying developments:

• Lou Corsius terminated his membership of the sounding board group on the ME/CFS biomedical research program
• He also made a complaint to ZonMw that got rejected for no good reason (as agreed by the National Ombudsman)
• The ME/CVS Vereniging started a FOI request to see if the financing is actually going to solid biomedical research

Lou Corsius, 13-4-23:

"Today I informed ZonMw that I am terminating the membership of the sounding board group in the context of the ME/CFS biomedical research program with immediate effect.

In 2019 I participated in the preliminary discussions with ZonMw and VWS about the structure of the research agenda and the biomedical research program ME/CFS that would follow.
After that I participated in the research agenda steering group and then in the sounding board group in the program phase.

I am sorry to say that I have completely lost the confidence in ZonMw that I initially had." [Google Translate]

https://twitter.com/user/status/1646542883280027648



Lou Corsius 15-4-23 reporting on complaint made to ZonMw:

Spoiler: Google translate text Lou Corsius reporting on complaint made to ZonMw

"Complaint handling by ZonMw

On October 4, 2022, I submitted a complaint to ZonMw about the state of affairs. On November 4, I received an informal email from ZonMw stating that my complaint would be rejected. On November 9, I sent another letter with the request to handle my complaint in accordance with the complaints procedure.
On December 12, more than two months after submitting my complaint, I received a response from ZonMw. My complaint is inadmissible. Below are the most important passages from that letter:

“In response to your (sic) complaint of October 4, 2022 and supplemented on November 9, 2022, my finding is that this is not a complaint as intended or appropriate in the complaints procedure. The main argument is that you are not a primary 'interested party' in the matter to which your complaint relates.
(…)
Even if it should be assumed that a behavior is not or remains limited to treatment, but can also extend, for example, to ZonMw's working method and services, I am still of the opinion that I will not handle your dissatisfaction as a complaint , because in ZonMw's view there is still no question of a treatment complaint. After all, the essence of complaint handling is the question of whether a government agency has behaved properly towards a citizen. In your case, ZonMw does not see how ZonMw would have behaved improperly towards you.”

I then turned to the National Ombudsman as indicated in the complaints procedure. I received the response on April 14.

“We do not follow ZonMw's main argument that you are not a primary interested party in the matter to which your complaint relates, because anyone may submit a complaint under the Awb. This also applies to ZonMw's argument that there was no improper conduct towards you. A complaint can also relate to behavior towards another person.

In view of this advice, I will ask ZonMw to better substantiate the position it has taken with regard to your complaint or to deal with your complaint as yet. “

https://twitter.com/user/status/1647151603919749122



And

Spoiler: Google Translate translation of the ME/CVS Vereniging press release regarding the FOI request

The ME/CFS Association is involved as a patient organization in the ZonMw biomedical research program ME/CFS. In that context, (follow-up) discussions of a confidential nature will take place with ZonMw. ZonMw plans to soon publish its decisions on which studies will receive funding from the first funding round.
The ME/CFS Association attaches particular importance to (restoring) trust, transparency, careful (process) execution and the allocation of subsidies to good biomedical research. We have not been sufficiently successful in obtaining more insight to determine whether this has been done in an appropriate manner. As a result, we feel compelled to appeal to the Open Government Act (Woo).
We will continue to adopt a constructive attitude, but with a critical eye. Biomedical research is desperately needed to cure ME/CFS!

View the copy of the Woo request for the first grant round of ZonMW research program MECVS here

https://twitter.com/user/status/1647227988394516481