As part of the ZonMW initiative which implements a direction to fund a 28.5 million euros 10-year programme of biomedical research programmes on ME/CFS, the Netherlands ME/CFS Cohort and Biobank consortium (NMCB) has begun.
In this consortium, six projects will focus on biomedical research into ME/CFS with one, now announced, being the Netherlands Brain Bank for ME/CFS (NHB-ME/CFS): a new donor programme specifically for ME/CFS which aims to collect brain tissue and make it available to researchers worldwide.
It is intended that brain tissue of ME/CFS patients, and of healthy controls, be collected by the Netherlands Brain Bank (NBB). The NHB performs up to 150 brain autopsies per year and supplies approximately 6,000 tissue samples to more than 100 research projects globally. With the average time between death and tissue sampling being 6.5 hours, a highly efficient and integrated system needs to be in place to collect viable samples quickly as high quality samples are vital for research.
The NBB currently has 20 people with ME/CFS registered but more are needed and a call has been made within the Netherlands for donors.
The brain has been the centre of much research into ME/CFS – both by ME Research UK – and others and a brief overview of brain research was provided in February 2024.
The rational for a brain bank has been explained clearly by Nederlandse Hersenbank
However, very little is known about possible molecular and cellular changes in the brain in people with ME/CFS. What happens in the brain in ME/CFS? Is this preventable, treatable, and how can ME/CFS be better diagnosed?
To study possible molecular and cellular changes in the brain, researchers need to be able to zoom in on brain tissue down to the smallest level. This is only possible if this brain tissue is made available for scientific research.
However, there is currently no brain tissue from people with ME/CFS available for scientific research. That is why the NHB asks extra attention among people with ME/CFS for the possibility of registering as a brain donor. The NHB has set up a new program called NHB-ME/CFS.
