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

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:

“The sounding board group, which consists of four patient representatives, has shown that all members have personal interests. For example, because patients with whom the sounding board members work closely are involved in grant applications or because they have commented on previous publications by applicants, which may lead to (the appearance of) bias…ZonMw has decided that sounding board group members in the program committee are not allowed to judge subsidy applications. They may, however, advise the program committee on this. They therefore have a say in the quality and relevance of grant applications, after which the rest of the committee formally assesses the applications.“

The statement added: “With this solution, ZonMw tries to find the best possible balance between the valuable input of patient representatives and guaranteeing a careful and transparent process. After this subsidy round, the sounding board group members will re-examine the best way to allow patient representatives to participate in the assessment of subsidy applications in subsequent subsidy rounds.”

The statement did not identify any specific conflicts of interests or evidence of bias on the part of any of the four patient representatives in the sounding-board group; perhaps these matters were conveyed internally to the participants themselves. But it shouldn’t be surprising that vocal advocates for patients would have “commented on previous publications” by grant applicants who had already conducted research in this field—especially if that research resembled so much of the crap we have seen from some leading Dutch investigators. So the existence of such comments should not have been a surprise to anyone at ZonMw or elsewhere. 

Subsequently, ZonMw delayed the announcement of its grant decisions, first to December of last year and then till late April. However, on April 13th, one of the sounding-board group members—Lou Corsius, a longtime patient advocate with a severely ill daughter—publicly announced his resignation, posting the following statement on social media:

“Today [April 13, 2023] I informed ZonMw that I am terminating my membership in  the sounding-board group within the framework of the biomedical research programme for ME/CFS, with immediate effect.

“In 2019, I participated in the preliminary discussions with ZonMw and VWS [Department of Health, Welfare and Sport] about the design of the ME/CFS research agenda and biomedical research programme that ZonMw would pursue.

“After that I participated in the steering committee for developing the research agenda and then in the sounding-board group during the program phase.

“I regret to say that I have fully lost the trust I initially had in ZonMw.”

Needless to say, Corsius’ resignation—and his declaration of having “lost the trust” he once had in ZonMw—is not a promising development. It does not bode especially well for the Tuesday announcement, which will showcase ZonMw’s decision-making in this domain.