Post-exertional malaise: a starting point to investigate and understand ME/CFS
Physical exercise is important for general health. However, this is not true for patients with ME/CFS. Exertion actually worsens their symptoms and patients experience this for an extend period of time. This is called post-exertional malaise (PEM) and is an important symptom for diagnosing ME/CFS. A better understanding of PEM can help untangle metabolic and pathophysiological processes underlying ME/CFS.
Goal
Exercise leads to complex cardiovascular, metabolic and molecular reactions in the body. It is unknown how these reactions lead to symptoms in people with ME/CFS. If these connections are better understood, we may be able to manage and treat this disease better. The aim of this project is to understand how physical and cognitive exertion can exacerbate symptoms of ME/CFS
Approach
This project involves 50 patients performing different tasks. Before, during and after performing these tasks, the effects are studied at different levels (molecular, organ and system). Since PEM is induced by both physical and cognitive effort, both types of tasks are part of this study. The changes in symptoms are studied and related to 1) performance delivered (hand muscle strength, fatigue and cognitive performance), 2) changes in metabolism and 3) blood flow and activity in the brain. This is done through force measurements, choice tasks, questionnaires, blood samples, and measurements of blood pressure, heart rate and cerebral blood flow
Part of the ME/CFS Lines consortium
This research project is associated with the ME/CFS Lines consortium. More information on the consortium and the other ME/CFS Lines research projects can be found on the ME/CFS Lines consortium’s page.
Collaborative partners
The research is done in collaboration with ME/CFS Lines. This is a multidisciplinary consortium with biobank to find the cause of ME/CFS. Within the research, different departments of the UMCG (Biomedical Sciences of Cells and Systems, Medical Systems Biology, Internal Medicine/Endocrinology and Laboratory Medicine) collaborate. Pluut&Partners is a consulting agency that will help us reach patients and disseminate the results and knowledge gained from our research. Patient representatives from ME/CVS Nederland were closely involved in drafting the research proposal. They will remain involved throughout the project: exchange views on research questions, interim findings, progress and the final interpretation and utilization of the research results. The patient representatives involved will be paid for their efforts.
(Expected) Results
The results will contribute to understanding the underlying processes and generating hypotheses about the origin and treatment of ME/CFS. Patients may gain a better understanding of the link between their activities and their often long-term effects through this research. Insights from this study may give patients clues on how to cope with their symptoms. A clearer picture of this is also important for patients' relatives, researchers, teachers, policymakers and physiotherapists.
Other
Extensive collaborations and Open Science are essential in research. Therefore, all outcomes will be published in an accessible manner. This research follows FAIR principles and ethical standards with regards to privacy and well-being of patients and participants.