ME/CFS can have serious and long-lasting consequences, but much is still unclear about this disease. Doctors do not yet agree on the characteristics, causes, treatment or even the name of the disease. The Amsterdam UMC research programme will try to tackle these issues.

Collecting data at patients' homes

‘We will be focusing on patients who are known to hospitals and researchers,’ says Bosch. ‘All of the Dutch university medical centres will take part in our consortium, as well as 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.’ The team will also look at patients with long-term symptoms after an infection, such as Lyme disease, Q fever or COVID, since 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.’

Patients will also be visited at home by specially trained nurses, and if they have to visit a research institution for a scan they will then be transported and accompanied where necessary. This makes it possible to include people with severe ME/CFS in the research. In the past, it was precisely the most serious cases that often remained out of sight of researchers because they were too ill to participate in research. ‘We will also be able to focus on those patients who are housebound or even bedridden, whom we will visit at home for measurements,’ says Bosch. Biomaterials will also be collected from 100 patients with severe ME/CFS so that as much research as possible can be done on the most severe patients.

Active role for patient organisations

The research programme was partly established thanks to the active role of patients and their advocates and patient organisations will continue to play an important role in the consortium.

‘Our work will encompass three themes: outreach, relevance and clinic. For each of these themes there is an advisory board in which the patient organisations are represented. The patient organisations also have a representative on the board. I think their role is very important, not only In terms of content, but also so that we can involve patients and ensure that the results find their way into practice,’ says Bosch.

A long-term effort

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, so a drug or other treatment could prove effective in one group of patients, but not in another. Unfortunately, a lot of patience is still needed.’