By David Tuller, DrPH
*April is crowdfunding month at UC Berkeley. If you like my work, consider making a tax-deductible donation to Berkeley’s School of Public Health to support the Trial By Error project: https://crowdfund.berkeley.edu/project/37217
On Tuesday, ZonMw announced the first grant recipients in its program of “biomedical research on ME/CFS”—the initial round of awards from the €11.6 million allocated for the 10-year effort. I wrote on Monday about the resignation earlier this month of a patient representative involved in the grant-making process, a move that raised concerns about the upcoming announcement. In resigning, Lou Corsius, a longtime advocate with a severely ill daughter, declared that he had “fully lost” his trust in ZonMw, although he did not offer any specific reasons.
Now it’s clear what the fuss was about.
Of the funds slated to be doled out, €4.4 million are going to a consortium headed by Judith Rosmalen, a professor of psychosomatic medicine at the University of Groningen. Her profile page on the university’s site lists her areas of expertise as “psychosomatic medicine, persistent somatic symptoms, medically unexplained symptoms, functional syndromes, somatic symptom disorders.” That hardly seems like the appropriate background for someone charged with investigating biomedical causes and treatments—not psychosocial ones–for ME/CFS.
Professor Rosmalen is a member of the advisory board of the Journal of Psychosomatic Research, which appears to function as something of a house organ for members of the GET/CBT ideological brigades; Professor Michael Sharpe, the Oxford don and a lead investigator of the discredited PACE trial, and Professor Per Fink, a Danish psychiatrist, are also advisory board members. Last June, Professor Rosmalen introduced Professor Sharpe with flattering verbiage at a gathering of the European Association of Psychological Medicine, as can be viewed here.
In a statement on ZonMw’s site, Professor Rosmalen highlighted her biomedical bona fides, noting that she studied medical biology and has a PhD for “immunological research into autoimmune diabetes.” She also stated this: “In many chronic diseases, too little attention is paid to the psychosocial aspects. But ME/CFS puts too much emphasis on that. The biomedical aspect has been ignored for far too long.” In a striking omission, she does not mention that she and her colleagues in the field of psychosomatic medicine, with Professor Sharpe as the prime example, have pushed the opposite perspective; many of them have previously denigrated the search for biomedical causes and treatments as a waste of time. (This paragraph was added later for context.)
As I reported on Monday, earlier in the decision-making process ZonMw had stripped members of a sounding-board committee from the right to vote on proposals, citing in part past statements by these individuals—all of them patient representatives. Given Professor Rosmalen’s longtime role as a promotor of psychosomatic approaches in this decades-long debate, it would have been surprising if patient representatives had not previously commented on her problematic notions.
Another consortium will receive the remaining €7.2 million. (I’ll likely have more to say about some of the specific projects being funded in a later post.)
Here’s the short take from ZonMw’s Tuesday report:
“Soon 10 projects, within 2 consortia, will start with biomedical research into the disease ME/CFS. They receive funding from the ZonMw research program ME/CFS, which focuses on research into the causes, diagnosis and treatment of the disease. With the start of the projects, a foundation is laid for a solid and sustainable research infrastructure for ME/CFS in the Netherlands.
“Important within the program is the collaboration between different research disciplines, international research groups, different professional groups, clinics and patients. This is how the program ensures impact: improving the treatment, quality of life and social position of ME/CFS patients.”
Despite praise for some of the biomedical research projects included in the funding package, the announcement of Professor Rosmalen’s participation drew immediate pushback from some quarters. The ME Global Chronicle, an advocacy site, published a critique of Professor Rosmalen’s research that suggested her epidemiological estimates of the number of ME/CFS patients in the Netherlands were wildly inflated. The Dutch ME/CFS Association, which had appointed Corsius to the sounding-board group, declared in a statement after Tuesday’s announcement that it was both “satisfied and critical” of the ZonMw funding decisions:
“We are satisfied with the funding of the applications of the NMCB consortium. We are surprised and concerned about the granting of the application for a second biobank, from the ME/CFS Lines consortium. Surprised because the research agenda and the research programme mention a single biobank and data registration. Concerned, because we have many questions about the method of this second biobank/data recording to select patients for this, where sufficient clinical experience with ME/CFS patients seems to be lacking. This can seriously impair the quality of ME/CFS Lines studies. We were not involved in the preparation of this second consortium and, despite our questions, did not receive enough information to be able to assess the sub-studies within this consortium. The ME/CFS Association has submitted a WOO request to ZonMw (Open Government Act) to get more clarity about this.”
Perhaps more information about the decision-making process will become available. Perhaps Professor Rosmalen wrote a persuasive proposal and, in the context of the ZonMw program, will adapt her perspective to produce useful and credible biomedical research. Since I see little in her previous work that would make her a suitable choice for this project, I’m skeptical. But I remain open to surprises.
4 thoughts on “Trial By Error: Dutch Agency Awards Big Biomedical ME/CFS Grant to Judith Rosmalen, Professor of Psychosomatic Medicine”
Kindly inform the professor that neither patients nor physicians are presented with any evidence to date, that the origins of ME/CVS are in fact psychosomatic.
Also people with an illness have rights and pay taxes too- they should not be imposed with any psychsomatic ‘experiment’ without consent.
To call this ‘social’ in any way, shape or form is ludacrous at best. We can and should do better!
Ellen van der Leeden
Is it possible that some of the people involved believe that biomedicine and psychosomatic medicine are the same thing? It appears that psychosomatic medicine subscribes to the biopsychosocial (BPS) model of medicine but, from what I’ve seen, it fails dismally to adequately monitor the psychosocial fallout of not thoroughly investigating and treating patients from a bio-medical perspective. Its proponents don’t seem to me to care that much if patients continue to suffer and decline of if they lose their jobs and careers and their lives disintegrate; rather, patients who fail to improve are often blamed for not engaging properly with the prescribed exercise and psychological therapies, even when they do. Governments need to start monitoring the true failure rate of psychosomatic medicine, not by getting proponents of psychosomatic theory to conduct more research studies but by following up every patient who has been diverted to psychosomatic care to find out how their lives have changed. If they don’t monitor this, then I suspect it won’t be long before their economists are scratching their heads as to why their country has a diminishing workforce with a fall in productivity. Monitoring the model’s failure will be all the more important if hospitals increasingly buy into a psychosomatic version of the BPS model in order to save money, as appears to be happening in the UK.
Greatest Scandals of the Century: just keep adding the titles of these papers.
It is not scientifically true that ME/CFS is primarily psychosomatic, largely psychosomatic, or even very significantly psychosomatic.
However, all of that is fiscally ‘true’.
And in single payer systems, and systems of private insurance in which patients do not have the ability to choose their own doctors and treatments, fiscal truth will ultimately prevail over scientific truth — unless and until the actual causes of ME/CFS are found and established.
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