Big (and a lot and hopeful) news from the Dutch ME front

Provisional research agenda submitted to the Minister of Health, Welfare and Sport

Read the original letter from ZonMw to the minister here (in Dutch, use google translate)

* Research grant: a total of € 20-29½ million, duration 10 years (still to be approved by VWS, the Dutch dHHS) of which € 2½ million for the formation of a patient cohort of sufficient size

* Completely biomedical research program, with majority advice (70%) of foreign researchers consulting the CCC and/or ICC to be the standard.

* Coordination with/participation of patients from start to finish

* Conducted/ongoing foreign research is partly decisive; in the long run, interaction between Dutch and international research is the goal

* New insights  in between about ME are immediately being anticipated

* Design of an ME research infrastructure within the Netherlands

As you may know from earlier articles in the ME Global Chronicle(under the heading Dutch Citizens Initiative), what started in 2011 as a petition/citizen initiative of Group ME-The Hague resulted via a report from the Health Council in the assignment of the Minister of Health to ZonMw to draft a research agenda and researchprogram.

To this end, after five discussions with four representatives of patient organizations, ZonMw set up a research agenda committee https://bit.ly/2BNOyEe. This committee should have come to a research agenda last month, but that has been delayed until the end of 2020 due to COVID-19. Nevertheless, ZonMw was able to send a letter of progress to the Ministry of Health on 29 May. Because the minister has just forwarded it to parliament, it is public and the content may be made published.
The full text of the letter can be found here (Dutch)

We highlight some important points below, which we were eager to share, as they are very hopeful for the future not only of ME-patients in the Netherlands but maybe worldwide, although that will not happen overnight.

 

THE RESEARCH PROGRAM ITSELF

* The research program will be completely biomedical in nature. Studies into (effects of) psychogenic treatments will not be eligible for funding.

* The research program will extend over 10 years. The total budget will be between € 20 and € 29.5 million. A further specification of that amount will be determined towards the end of this year. It has already been decided that € 2.5 million will be spent on building a patient cohort and building a research infrastructure in our country.

* Priorities are set only for the first 4 of those 10 years. After all, no one knows what progress international research developments will make regarding ME. Initially the focus of the Dutch research will certainly be on alignment with research already been done or ongoing abroad, as all parties agree that the Netherlands has to catch up first. Research grants can only be applied for by Dutch researchers.

* The research agenda for the first 4 years has 4 spearheads, in order of priority:

  1. The aforementioned structure of a patient cohort. This must of course be as homogeneous as possible, so the most accurate current knowledge of ME will have to be met with.
  2. Fundamental research with a focus on 5 body’s systems that are the main players in ME: the immune system, the metabolism, the nervous systems, the brain and the energy balance within the cell.
  3. Longitudinal research (which will of course be conducted during on-going researches and thus cannot be strictly separated from fundamental research) into the origin and course of ME.
  4. clinical research into possible biomarker(s) and treatments, and research into possible improvement of how patients are being treated.

TIME FRAME

September/October 2020: working sessions with interested future researchers.

November 2020: program day with international speakers

December 2020: the text of the research agenda is being finalized.

first half of 2021: compilation of text of a research program and formation of a program committee, including representation of the patients.

mid-2021: call for applications for research grants

second half of 2021: fund applications submitted will be assessed.

It is important to mention that in addition to intensive consultation of the 4 patient representatives, an international consultation among researchers from all over the world was also carried out by ZonMw via a survey. Both initiatives form the basis of this letter of progress.

An important point issuing forth of this survey is that 16 of the 23 foreign researchers surveyed proposed the CCC and/or ICC as inclusion criteria to be used.

also see the short summary on fb of the ME Global Chronicle
picture: ME Centraal, the entrance to the Binnenhof and the Houses of Parliaments, The Hague

 

Een gedachte over “Big (and a lot and hopeful) news from the Dutch ME front

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