ME/CFS is a severe and chronic systemic disease that leads to significant impairments. It is a disease with an unknown cause. Patients suffer from severe fatigue that lasts at least more than six months. There is a lack of effective treatments due to limited knowledge about the background of the cause of ME/CFS.
In this study, the UMCG is working with several partners to build a cohort (patient group) and expand the ME/CFS Lines biobank. The ME/CFS Lines biobank builds on LifeLines, the already existing biobank with data and biomaterials from 167,000 participants. In this study, biomaterials are studied from different research disciplines relevant to ME/CFS. The design of the study was prepared together with several patient associations, with whom there will also be close cooperation during the study.
Judith Rosmalen leads this study from the UMCG. According to her, the greatest strength of this new study is the large amount of data and biomaterial already available in Lifelines: 'For almost ten years now, the diagnostic criteria for ME/CFS have also been included in the Lifelines data collection. So we have a lot of biomedical data and biomaterials from patients with ME/CFS. In this way, we found people who developed ME/CFS over the course of those ten years and so we also have biomaterials and data from before they were diagnosed. All those patients we are going to compare in many ways with healthy Lifelines participants, or participants with other chronic diseases like MS or Post-COVID. And we can also look back: what biomedical changes do we see in people who have been diagnosed with ME/CFS? Hopefully that will provide leads for better diagnostics and treatment.'
The research consortium itself will also collect additional biomaterials and data. For instance, stool samples will be collected to look at the gut bacteria people carry with them to get more clarity on the role the microbiome plays. Some of the participants will also undergo an exercise test, after which metabolism and processes in the brain will be examined. Using the biomaterials already collected, analyses will be done on the genetic background of ME/CFS, and on immune responses.
Rosmalen: 'For example, there are indications that antibodies against certain bacteria are more common in people with ME/CFS. One of our researchers demonstrated that earlier in a relatively small study. We will soon be able to investigate that in many more patients.'
The sub-studies are led by UMCG researchers Sascha Zhernikova (Genetics), Inge Zijdewind (Neuroscience) and Aleksandr Kurilshchikov. A fourth study is led by Cindy Boer from Erasmus MC.
More information can be found on the ZonMW website.
