Fundamentally wrong decision
As reported in the December 2023-issue of the ME Global Chronicle, massive protests were held in the Netherlands by the ME community over the awarding of a €4.4 million research grant to Prof. Judith Rosmalen and the ME/CFS Lines Consortium of which she is the lead investigator.
Money that was supposed to go to biomedical research that had to match international research has been awarded by Dutch ZonMw to a researcher who is not only 100% rooted in the medically unexplained symptoms (MUS) approach of ME, but has also rolled out that vision in Dutch society. The MUS approach has caused every day patients to sometimes suffer dramatic negative consequences .
In addition, her grant application did not meet the research agenda approved by the minister and awarded €28.5 million in funding on five essential points.
FOI’s unanswered
ZonMw has left freedom of information (FOI) requests for more data unanswered for almost a year despite there being a six-week time limit for doing so. A FOI request for more information about the formation of the program committee that made this challenged decision has also remained unanswered to date.
In addition, her grant application did not meet the research agenda approved by the minister and awarded €28.5 million in funding on five essential points.
Much more about how this came to be here.
Amendment against this decision
A parliamentary amendment to this controversial decision was submitted by politician Nico Drost. His proposal was that Prof. Rosmalen should keep the €4.4 million grant, but that it should not be drawn from the €28.5 million grant awarded. It has been agreed upon by the Dutch parliament on 15th February this year.
The parliament, which represents the Dutch people, thus signaled that ZonMw made an unjustified decision. Nevertheless, ZonMw maintains its 100% support of Prof. Rosmalen’s consortium, and the program committee that made the challenged decision to award her a €4.4 million grant. Talk about rigidity.
One patient organization, MECVS Nederland, is an ardent supporter of Prof. Rosmalen, and also financially involved in her consortium. No wonder they did not welcome the adoption of the Drost amendment and made no mention of it at all, while it filled all ME-patients in the Netherlands with the joy of recognition.
In search of € 4,4 million
Thus, as a result of the adopted Drost amendment, ZonMw gets €4.4 million more to spend. The only question is how that will take shape, given the previous decision disapproved by parliament.
When asked, ZonMw simply waits until the Minister of Health transfers that amount, and does not take any preparatory steps to spend this amount correctly.
Again, a sign that ZonMw prioritizes its own rules over the interests of ME patients themselves.
To be continued.
The ME Global Chronicle 