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The Netherlands - €28.5 million ME/CFS research program call for applications, 2022

Discussion in 'ME/CFS research news' started by Andy, Dec 19, 2021.

  1. Andy

    Andy Committee Member

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    "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/

     
    Michelle, sebaaa, MEMarge and 19 others like this.
  2. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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  3. Hutan

    Hutan Moderator Staff Member

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    Solstice, Michelle, MEMarge and 18 others like this.
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    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.
     
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  5. Barry

    Barry Senior Member (Voting Rights)

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    upload_2022-2-14_18-47-39.png

    upload_2022-2-14_18-48-21.png

    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.
     
    Last edited: Feb 14, 2022
  6. strategist

    strategist Senior Member (Voting Rights)

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    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.
     
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  7. Grigor

    Grigor Senior Member (Voting Rights)

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    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.
     
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  8. Dolphin

    Dolphin Senior Member (Voting Rights)

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    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.
     
    Michelle, MeSci, Grigor and 5 others like this.
  9. Dutch ME advocate

    Dutch ME advocate New Member

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    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.
     
    Last edited by a moderator: Feb 16, 2022
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  10. CRG

    CRG Senior Member (Voting Rights)

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    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.
     
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  11. Wyva

    Wyva Senior Member (Voting Rights)

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    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. :)
     
    Last edited: Feb 16, 2022
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  12. Dutch ME advocate

    Dutch ME advocate New Member

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  13. Dutch ME advocate

    Dutch ME advocate New Member

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

    Simon M Senior Member (Voting Rights)

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    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.
     
    Last edited: Feb 17, 2022
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  15. Solstice

    Solstice Senior Member (Voting Rights)

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    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.
     
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  16. CRG

    CRG Senior Member (Voting Rights)

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    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.
     
  17. Grigor

    Grigor Senior Member (Voting Rights)

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    Not that I have heard of.
     
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  18. rvallee

    rvallee Senior Member (Voting Rights)

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    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.
     
    Last edited by a moderator: Jun 3, 2022
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  19. Solstice

    Solstice Senior Member (Voting Rights)

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    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.
     
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