Brain changes in ME/CFS: Focus on the stress and immune system

Project description

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) has various neurological symptoms, such as mood swings, lack of energy and problems with sleep and concentration. Despite initial evidence of brain involvement in ME/CFS, little is known about possible molecular and cellular changes in the brain. In this project, brain tissue will be collected through an ME/CFS donor programme. The brain tissue will be used to investigate systems that deal stress response, immunity and energy metabolism. 


ME/CFS is often thought of as a brain disease because of its neurological symptoms. However, little is still known about changes in the brain of ME/CFS patients. By collecting brain tissue through a brain donor programme, this can be studied. This leads to more knowledge about the mechanism and possible origin of this disease and can thus help improve diagnosis and treatment, which is relevant for patients, doctors and researchers.


Brain tissue from people with ME/CFS is currently not  available for scientific research. To change this, this project sets up a brain donor programme to collect and study brain tissue from ME/CFS patients. The collected brain tissue will be made available for research. The aim is to find 200 donors to then be able to do 5 autopsies a year. So far, 25 ME/CFS donors have already been registered in the Netherlands Brain Bank (NBB). The study focuses on brain tissue changes in patients. It also looks at the HPA stress axis, inflammatory cells and energy metabolism.

Part of the NMCB consortium

This research project is associated with the Netherlands ME/CFS Cohort and Biobank (NMCB) consortium. More information on the consortium and the other NMCB research projects can be found on the NMCB consortium’s page.

Collaboration partners

This research will be conducted by Hamann (AMC/NIN), Lucassen (UvA) and Huitinga (NHB/NIN) within the Netherlands ME/CFS Cohort and Biobank (NMCB) consortium with J.A. Bosch as project leader. The Netherlands Brain Bank ( has previously established donor programmes for multiple sclerosis and psychiatric diseases. The Neuroimmunology research group of the KNAW's Netherlands Institute for Neuroscience ( has extensive experience in neuropathological analyses of human brain tissue. Essential for this project are contacts with consortium partners and advisers, patient associations and ME/CFS initiatives in other countries. We expect to organise exchange visits with research groups at the universities of Utrecht and Bergen.

Expected Results

While ME/CFS is often called a brain disease because of its symptoms, exactly how it works in the brain is still unclear. This study is expected to reveal more about the molecular and cellular changes in the central nervous system in ME/CFS patients. By collecting brain tissue from ME/CFS patients through the NBB-ME brain donor programme, research on the stress system, immune system and energy metabolism can be done. Such a programme, as far as we know, does not yet exist anywhere in the world and allows this consortium to conduct new research, and through Open Access, make the material, also available to other researchers worldwide. 


Patients and their practitioners will be involved through informal meetings where they van provide feedback. Interested donors will receive detailed information about the Netherlands Brain Bank and its procedures. 

The results of this research will be shared with patients, doctors, scientists and companies. This knowledge will be disseminated through datasets, scientific articles, presentations, newsletters and meetings. 

The research will take 4 years, but the brain tissue collected will be kept in the Netherlands Brain Bank (NHB). As this project follows the principles of Open Science and FAIR data, this means that the NBB-ME brain donor programme will also be accessible to other researchers and results will become widely and openly available.


Project number:
Duration: 15%
Duration: 15 %
Part of program:
Related subsidy round:
Project lead and secretary:
prof. dr. I. Huitinga PhD
Responsible organisation:
Universiteit van Amsterdam