Explaining skeletal muscle-related symptoms in patients with ME/CFS: from skeletal muscle to exercise immunology (MuscleME)

This project aims to map ME/CFS patients based on skeletal muscle and circulatory phenotypes. It will also assess the changes in blood  and skeletal muscle in patients with long-COVID and ME/CFS before and after onset of post-exertional malaise. Furthermore, the study aims to clarify the physiological link between autoimmunity, microclots and skeletal muscle structure and function. The knowledge acquired though this project may improve the diagnosis and treatment of ME/CFS.

For this study, blood samples and muscle biopsies from patients and other individuals from the Netherlands ME/CFS Cohort and Biobank (NMCB) will be analysed for structural and functional changes. Patients long-COVID are also included in this study, because infection could underlie ME/CFS, as seen with COVID-19. In addition, the cause of post-exertional malaise and the relationship between autoimmunity and muscle adaptations will be investigated. Biomarker clusters are being developed with the aim of improving diagnosis, treatment and patient care. 2 PhD students are working on this project, together with several international scientists.

This research is part of the Netherlands ME/CFS Cohort and Biobank (NMCB) consortium. Collaboration partners in this project are Vrije Universiteit Amsterdam, Amsterdam UMC, Sheffield University (UK), University of Bergen (Norway) and Stellenbosch University (South Africa). The research group has over 17 years of experience in skeletal muscle research. 3 patients act as patient representatives. They are involved in the design and direction of this project. The patient representatives and researchers will meet regularly to discuss the project’s progress. 

Patients with ME/CFS suffer from loss of concentration, sleep problems and muscle-related complaints, such as extreme fatigue and muscle pain. Exercise leads to worsening of symptoms (post-exertional malaise), which can last from days to weeks. This study aims to develop biomarker clusters by analysing blood and muscle biopsies from patients and other individuals for structural and functional changes. It also investigates the mechanism of origin of post-exertional malaise and the relationship between autoimmunity and muscle adaptations. This knowledge is expected to improve diagnostics, provide new insights for treatment and also better implementation strategies that should lead to improved patient care.

The researchers collaborate with several other NMCB projects to optimise analyses, engage patients and share results. They also collaborate with colleagues in Europe and South Africa. The PhD students and project leader of this project will become members of the European ME Research Group (EMERG) and will attend international conferences in the field. This research will yield several scientific publications and 2 PhD theses. Furthermore, Dr Rob Wüst will keep all partners informed about the project via his X account twitter.com/RobWust. 

The aim is to inform the general public about the project’s outcome.  Media have already showed interest in this research and Nieuwsuur has made an item about the redearch. Education of students is additionally an important part of this project, as knowledge on this topic is now lacking in most curricula. A data management plan already exists for this research. The data management system CASTOR is used and data are stored via the FAIR principles (Findable, Accessible, lnteroperable, Reusable).