Thanks to a ZonMw grant of more than seven million euros, Amsterdam UMC kick starts new biomedical research into ME/CFS. Jos Bosch, researcher at the University of Amsterdam and Amsterdam UMC, leads along with more than 20 partners, the hunt for answers to the following questions: What exactly happens in the body of patients? How can the diagnosis be improved? And what might be effective treatments?
“We focus on patients who are known to hospitals and researchers,” says Bosch. “All Dutch university medical centres will take part in our consortium, including the Ministry of Health who follow a group of 40,000 people with long-term symptoms after COVID, and the Fatigue Clinic, which many people with ME/CFS attend.” Bosch also bundles groups of patients with long-term symptoms after an infection, such as Lyme disease, Q fever and COVID. A proportion of these patients meet the criteria for ME/CFS. ‘Therapists and researchers have already done a lot to collect data,' says Bosch. “But so far, they mostly didn't work according to the international criteria of ME/CFS research. We're making an important step now by doing so.”
“Together with the other consortium, we coordinate our research protocols with the large international cohorts, such as those in the United Kingdom, Germany and Canada. This has the great advantage that data will soon be comparable. We can reinforce each other's work and hopefully this will also lead to usable results more quickly,” says Bosch.
Long term efforts needed
Bosch emphasises that he does not want to raise false hopes, “we know how difficult ME/CFS is for many patients. But there is still so much unknown. ME/CFS probably has several causes. A drug or other treatment may then be effective in a subgroup of patients, but not in everyone. Unfortunately, this is a matter of patience.”
At the same time, another consortium from UMC Groningen will also investigate ME/CFS. Both consortia are therefore also aimed at training a new generation of researchers. In this way, they hope that biomedical research into ME/CFS will become stronger and more successful. After all, it is ultimately about making effective treatment available for every patient with this debilitating disease.