1. Guest, the 'News in Brief' for the week beginning 23rd November 2020 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice
  3. Guest, NICE have published their draft guideline for ME/CFS, click here to read about it.
    Dismiss Notice

News from The Netherlands (next event 19 November 2020)

Discussion in 'Regional News' started by Michiel Tack, May 6, 2020.

  1. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

    Messages:
    2,025
    Likes Received:
    19,480
    Location:
    Belgium
    I thought it might be useful to have a thread on ME/CFS news for the Netherlands, similar to the threads we have on Scandinavian countries. If there's some really important news we could make a separate thread for it and link to it in this general thread that keeps an overview of all ME/CFS news from the Netherlands.

    Steering group has laid out main principles of for the research agenda on ME/CFS
    Most of you will remember the 2018 report by the Dutch Health Council. It recognized ME/CFS as a serious illness and advised to increase funding of biomedical research into the illness. A steering group has been formed to make this possible. It includes several patient representatives.

    After consulting several experts, the steering group now has determined the main principles for the research agenda on ME/CFS. It will focus on immunology, neurology, cardiology, and cell biology.

    The steering group wants to develop a thoroughly screened Dutch cohort of ME/CFS patients that will be tested and follow up on for several years. Standardizing data on this cohort will facilitate research into the cause, diagnostic, and treatment of ME/CFS.

    More info on the website of The Dutch patient organization Steungroep ME en Arbeidsongeschiktheid: https://www.steungroep.nl/nieuws/ni...ofdlijnen-onderzoeksagenda-me-cvs-vastgesteld
     
  2. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

    Messages:
    812
    Likes Received:
    5,502
    Perhaps you want to broaden the thread from the "Netherlands" to "Benelux" to include Belgium and Luxembourg? Your Avatar is showing you are in Belgium and I wouldn't want you missing out ;).
     
    Simbindi, MEMarge, Wonko and 6 others like this.
  3. Grigor

    Grigor Senior Member (Voting Rights)

    Messages:
    243
    Likes Received:
    2,386
    Cool stuff. Thanks Michiel!!!
     
    Simbindi, rvallee, Ron and 3 others like this.
  4. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

    Messages:
    2,025
    Likes Received:
    19,480
    Location:
    Belgium
    Simbindi, andypants, MEMarge and 7 others like this.
  5. Trish

    Trish Moderator Staff Member

    Messages:
    27,440
    Likes Received:
    134,340
    Location:
    UK
  6. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

    Messages:
    2,025
    Likes Received:
    19,480
    Location:
    Belgium
    Great! Thanks very much!
     
    Simbindi, MEMarge and Trish like this.
  7. Simon M

    Simon M Senior Member (Voting Rights)

    Messages:
    336
    Likes Received:
    6,130
    Location:
    UK
    The Netherlands is set to make a huge investment in biomedical research

    A patient-led petition asked the Dutch parliament to tackle ME properly. It instructed the Government to take action, which eventually led to the Dutch health research agency recommending a €25m biomedical research programme. Patients are playing a central role in the process.​

    Dutch-investment.jpg

    The Dutch national health research agency ZonMw is proposing spending around €25m (£23m, $29m) on exclusively biomedical research over the next ten years. The Dutch government looks set to accept the proposal, once the final version is submitted, probably early next year.

    The Netherlands is a small country (population 17 million), making this a very substantial investment per head. Allowing for the much larger US population, it would be like the NIH committing $500m over ten years.

    Patients have played a central role in making this happen and drawing up the plans — and will be an integral part of the new research programme.

    It all began in 2011 with a petition started by ME patient and advocate Mirande de Rijke. The petition called on the Dutch parliament to really tackle ME, with several specific demands, including basing diagnosis on the International Consensus Criteria (ICC), and treating ME as a biomedical illness. Two years later she had 56,000 signatures, more than the 40,000 needed to trigger a serious response from Parliament.

    Parliament’s response eventually led to a report from the Health Council of the Netherlands. That led in turn to the Minister of Health commissioning ZonMw, Netherland’s health research organisation, to develop a long-term, substantial ME/CFS research programme.


    ZonMw’s work has been delayed by COVID-19, but it recently wrote to the Minister of Health with its outline proposal, which should be finalised and agreed by early next year.

    The proposal is to spend €20–29.5m on a ten-year biomedical ME/CFS programme.

    Patients get a big say
    Since Mirande de Rijke started the process, people with ME have continued to play an important role. They were on the Health Council report team and four patient representatives are working alongside four researchers on the ZonMw proposals. As well as helping to draw up the research agenda, people with ME will help set up and run the grant award system. And then they will have a key role in the research programme itself.

    A huge and very good programme
    Up till now, the Netherlands has only been prominent in psychosocial research..

     
    Simbindi, MEMarge, Milo and 52 others like this.
  8. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    7,518
    Likes Received:
    43,952
    Fantastic news! :thumbup:
     
  9. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    6,567
    Likes Received:
    40,199
    Location:
    UK West Midlands
    That’s great :thumbup:
     
    Simbindi, Caesar, Yessica and 5 others like this.
  10. Sean

    Sean Senior Member (Voting Rights)

    Messages:
    2,679
    Likes Received:
    22,162
  11. unicorn7

    unicorn7 Senior Member (Voting Rights)

    Messages:
    261
    Likes Received:
    1,532
    Very good to read! I am involved in this project, so I am very proud that it is written about in such a positive way:):):)
     
    Hutan, Simbindi, Joh and 23 others like this.
  12. Simon M

    Simon M Senior Member (Voting Rights)

    Messages:
    336
    Likes Received:
    6,130
    Location:
    UK
    Thank you for what you were doing to support this project, it’s an inspiration to the rest of us.
     
    Hutan, Simbindi, MEMarge and 17 others like this.
  13. unicorn7

    unicorn7 Senior Member (Voting Rights)

    Messages:
    261
    Likes Received:
    1,532
    Thank you for your blog!
     
    Simbindi, Hutan, rainy and 7 others like this.
  14. Sisyphus

    Sisyphus Senior Member (Voting Rights)

    Messages:
    353
    Likes Received:
    1,277
    Well, I’ve lived long enough to see something encouraging happen.
    O/T: From the little I’ve seen of the Dutch, they’re generally fit, healthy and rather attractive. If that’s not true, it’s a pleasant illusion.
    Having the success in making your own health probably makes it harder to recognize a disease like ours.
     
    rainy, unicorn7 and Peter Trewhitt like this.
  15. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    5,151
    Likes Received:
    40,886
    Location:
    Canada
    Last edited by a moderator: Oct 11, 2020
    Simbindi, Hutan, Trish and 6 others like this.
  16. Hutan

    Hutan Moderator Staff Member

    Messages:
    10,968
    Likes Received:
    45,839
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,354
    Likes Received:
    44,435
    Location:
    UK
    ZonMW grant prof. Hans Knoop – the sequel
    https://mecentraal.wordpress.com/2020/11/01/zonmw-grant-prof-hans-knoop-the-sequel/
     
    mango, Andy, Michelle and 8 others like this.
  18. John Mac

    John Mac Senior Member (Voting Rights)

    Messages:
    337
    Likes Received:
    4,076
    Dutch conference on ME/CFS
    19 november 14:15 - 18:00, Online

    Today, little is known about the causes, diagnosis and treatment of ME/CFS. Therefore ZonMw is working on a Dutch research agenda on ME/CFS, together with scientists, practitioners and patients. During a national conference on ME/CFS on November 19th, we will discuss the key elements of the concept research agenda with Dutch stakeholders. We will also provide an update on recent developments in ME/CFS-research.

    The conference will mainly be in Dutch. However, key notes on the current state of research on ME/CFS by scientists from abroad will be English spoken. Anthony Komaroff will propose a unifying theory on ME/CVS pulling in disparate research findings, while Michael Van Elzakker presents evidence on neurological and brain aberrations. Jennifer Frankovich will talk about her clinical practice and how to make adjustments in your clinical research design to allow for enrollment of this type of patients. And Jonas Bergquist will tell you more about the biomolecular aspects of ME/CFS.

    There are no subtitles during the live event. However, subtitled recordings of the full conference will be available in the near future on the ZonMw website.

    https://www.zonmw.nl/nl/actueel/agenda/detail/item/dutch-conference-on-mecfs/
     
    Simbindi, Esther12, Sean and 5 others like this.
  19. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

    Messages:
    2,025
    Likes Received:
    19,480
    Location:
    Belgium
    Reminder: this event is today. I will try to follow the livestream.
     
    Grigor, cfsandmore, unicorn7 and 9 others like this.
  20. Grigor

    Grigor Senior Member (Voting Rights)

    Messages:
    243
    Likes Received:
    2,386
    Did you miss the symposium, organized by ZonMw, about ME on November 19?

    You can watch the live stream here:

    https://t.co/oOuUeVDlVs

    Speakers: Komaroff, Michael VanElzakker, Jennifer Frankovich, Jonas Bergquist and others.

    #MEZonMw
     
    Hutan, Amw66, rvallee and 4 others like this.

Share This Page