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Dr David Tuller: Dutch Agency to Announce ME/CFS Research Awards After Committee Resignation of Key Patient Advocate


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Trial By Error: Dutch Agency to Announce ME/CFS Research Awards After Committee Resignation of Key Patient Advocate​

2 Comments / By David Tuller / 24 April 2023
By David Tuller, DrPH

ZonMw is an independent Dutch organization that receives significant government funding for a variety of healthcare-related research projects. On April 25th—tomorrow—it is expected to announce the recipients of €11.6 million in grants for ME/CFS research. This announcement regarding ZonMw’s ME/CFS program is the result of a lengthy process that began ten years ago with a patient petition demanding more biomedical research into the illness.

The petition led to the creation of a committee under the auspices of Health Council of the Netherlands, an independent advisory body for the government and parliament. In 2018, the council issued its report—I wrote about that here—which, after more consultations, ultimately led to the development of a research agenda in December, 2020. That, in turn, led to a commitment from the Ministry of Health, Welfare and Sport agreed to commit €28.5 million for a ten-year biomedical research project. These events appeared to represent a significant setback for the forces promoting non-pharmacological interventions like graded exercise therapy and cognitive behavior therapy based on the notion that patients were mainly deconditioned and harbored dysfunctional cognitions about being sick.

The funding to be announced tomorrow is for the first round.of awards. Proposals were due by April of last year. But the process of assessing the proposals has experienced some hiccups. Last July, ZonMw posted an update about an “adjustment” to the process of evaluating proposals. According to the update, key patient representatives would not participate in decision-making about funding recipients because of their perceived conflicts of interest.

Here’s the key passage:.........