Netherlands Brain Bank starts brain donor program for myalgic encephalomyelitis/chronic fatigue syndrome

The Netherlands Brain Bank is starting a brain donor program for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to make brain tissue available for research into ME/CFS.

ME/CFS is a chronic disease in which people become severely fatigued and cannot recover. In fact, any relatively small effort worsens their complaints. The cause is unknown and the diagnosis of ME/CFS is complicated, as there is no clear test to determine whether someone has ME/CFS. Patients can therefore suffer from complaints for a long time, without knowing what is wrong with them.

These complaints also include neurological symptoms, such as dizziness, sudden drowsiness, memory and concentration problems. It is therefore very important to observe potential changes in the brain tissue of people with ME/CFS. As there is globally no available brain tissue from people with ME/CFS, this is currently not possible. The Netherlands Brain Bank wants to change that.

Netherlands ME/CFS Cohort and Biobank Consortium

Thanks to a ZonMW grant, the Netherlands ME/CFS Cohort and Biobank consortium (NMCB) has started. In this consortium, six projects will focus on biomedical research into ME/CFS. One of these projects is the Netherlands Brain Bank for ME/CFS (NHB-ME/CFS): a new donor program specifically for ME/CFS with the aim of collecting brain tissue and making it available to researchers worldwide. That is why the Netherlands Brain Bank is asking people with ME/CFS to consider registering as a brain donor. Currently, 20 people with ME/CFS are already registered with the Netherlands Brain Bank, but good research requires a lot more.

ME/CFS brain tissue for scientific research

Research with human tissue is one of the most effective methods to study and understand disease processes, because changes in cells and molecules become visible in this tissue. In recent years, research techniques have been further developed, allowing for better and more accurate visualisation of this tissue.

Identifying what changes, and goes wrong, brings science one step closer to prevention and recovery. It is therefore also crucial to be able to compare the situation of an ME/CFS patient with the normal situation in healthy people. To achieve this, researchers also need access to healthy brain tissue, or the ‘control tissue’, to compare the diseased tissue with. Brain donations from people without brain-related disease are therefore also essential.

Netherlands Brain Bank

The brain tissue of ME/CFS patients and healthy controls is collected by the Netherlands Brain Bank (NBB). This is an internationally renowned, professional Brain Bank that provides well-characterized and documented brain tissue to researchers. The average time between death and brain removal is 6.5 hours. This is very short, which keeps the tissue at a high quality for research. Researchers all over the world therefore request tissue from the NHB for their research projects. Brain donors register for the use of their brain and medical data while they are alive. Every year, the NHB registers around 200-300 new donors with and without various brain-related disorders. The NHB performs up to 150 brain autopsies per year and supplies approximately 6,000 pieces of tissue to more than 100 research projects.

Become a brain donor

More information about NHB-ME/CVS can be found here (https://www.hersenbank.nl/nhb-mecvs/). Are you considering becoming a brain donor? You can request an information package with a registration form via this page (www.hersenbank.nl/hersendonatie/register). You will also find answers to some frequently asked questions here. If you have any other questions, you can always contact us. You can do this by emailing info@hersenbank.nl, or by calling 020 566 5499. On working days we have daily consultation hours from 9:30 am to 11:30 am. Outside office hours you can leave a voicemail message and we will call you back as soon as possible. The Netherlands Brain Bank is part of the Netherlands Institute for Neuroscience, an institute of the Royal Netherlands Academy of Arts and Sciences (KNAW). The brain research into ME/CFS is also part of the Netherlands ME/CFS Cohort and Biobank consortium (NMCB; https://nmcb.eu/)

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