Amsterdam UMC Starts Major Biomedical Study into Chronic Fatigue Syndrome (ME/CFS) with 7.2 Million Funding from ZonMw

People with ME/CFS, also called chronic fatigue syndrome, are quickly exhausted with little effort and often also have other chronic complaints, such as (often) pain, memory problems and hypersensitivity to light and sound, for example. Much is still unknown about the disease. There are debates about the name, and there is no agreement about the characteristics, causes and best treatment of the disease. This research project led by Amsterdam UMC should change this.

Collecting data at patients’ homes

This study also involves patients with severe ME/CFS. It is precisely the most serious cases that previously often remained out of sight of researchers because they are too ill to participate in research. “We also focus on those patients who are confined to their homes or even to their beds. Specially trained nurses visit them at home for measurements,” says project leader Jos Bosch. And when these patients have to go to a research institution for a scan, for example, they are transported and accompanied if necessary. In addition, bodily material is collected from 100 patients with severe ME/CFS for study.

Internationally comparable

Bosch and his colleagues are also pooling data from groups of patients with long-term complaints after an infection, such as Lyme disease, Q fever and Covid-19. A proportion of these patients meet the criteria for ME/CFS. Bosch. “All UMCs help with the collection of data from patients with chronic fatigue complaints. This includes the RIVM, which follows a group of 40,000 people with long-term complaints after a covid-19 infection, and the Fatigue Clinic, which many people with ME/CFS go to.” What is also new is that the data is collected according to international ME/CFS research criteria. “We align our research protocols with large international studies, such as those in the United Kingdom, Germany and Canada. This has the great advantage that data will soon be comparable. We reinforce each other’s work and hopefully that will also lead to usable outcomes more quickly,” says Bosch.

Active role of patient organizations

The ZonMw ME/CFS research program was partly established thanks to the active role of patients and their advocates. Bosch: “Patient organizations were closely involved in the development of the research proposal. For example, patients and representatives participate in the advisory committees and are represented in the teams of the six sub-studies. I think their role is very important. Not only in terms of content, they also keep researchers on their toes and will ensure that the results find their way into practice more quickly.”

Don’t raise false hopes

Bosch emphasizes that he does not want to raise false hopes: “We know how difficult ME/CFS is for many patients. But there is simply still so much unknown. ME/CFS probably has several causes. For example, a medicine or certain treatment may be effective in a subgroup of patients, but not in everyone. Unfortunately, a solution for all patients is a matter of patience.”

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