This article was originally published in Lees ME 56 and has been reproduced on our website with permission from the editorial team and the people who contributed to the article.
NMCB Homevisits
by Linda van Schaik
NMCB stands for the Dutch ME/CFS Cohort and Biobank. A group of people who share a particular characteristic or condition is called a cohort. A biobank is a facility where biological materials, such as blood, are stored for scientific research
NMCB is a collaboration between scientists from all Dutch university medical centres, with a specific focus on biomedical research into ME/CFS. They collaborate nationally and internationally with other researchers and biobanks. They also support research into other post-acute infection syndromes (PAIS), such as post-COVID and persistent symptoms following Lyme disease, Q fever or sepsis.
NMCB is unique in Europe. Wherever possible, its work is carried out in consultation with patient organisations. Thirteen ME/CFS research projects are already making use of the biobank, and this number is expected to grow in the coming years. Researchers studying post-COVID are also using the biobank because the two conditions have so much in common.
To participate in NMCB research, you need a diagnosis of ME/CFS or another post-acute infection syndrome. Healthy people can also take part as controls.
Who are the home visits for?
When you register with NMCB, you will first be asked to complete a questionnaire to determine whether you are eligible to participate. This also helps establish whether the research should take place at your home or at a research site. Sometimes, this is not immediately clear. In that case, a nurse will discuss your situation with you by telephone to determine which option would be most suitable.
What does a home visit involve?
The people visited at home are seriously ill. Participation is valuable even if, for example, you are only able to provide a blood sample in a quiet environment. If you are able to do a little more, a handgrip strength test and measurements using specialised weighing scales may also be possible. An informal caregiver can, if necessary, help you complete the questionnaires about your symptoms. The research carried out at a research site is more extensive than the home visits. However, in all cases, participation is fully adapted to your individual capabilities.
The patient is in control
Before the home visit, you will receive a form on which you can indicate which sensory stimuli you can and cannot tolerate, and how you prefer or are able to communicate. You will be given plenty of time to complete it. If you have any questions, you can ask them during a brief telephone call. If you wish, you can agree in advance on a signal to indicate that you need to stop or take a break. As with all participation in NMCB research, you can decide to stop at any time. You do not have to explain your decision.
Collaboration with Utrecht
If you have post-COVID and also meet the ME/CFS criteria, you may be invited to participate in the DOMINO study in addition to your involvement in NMCB. People with ME/CFS who have not had post-COVID are also needed for the DOMINO study.
DOMINO is a research project conducted jointly by NMCB and UMC Utrecht. The researchers are investigating what causes post-exertional malaise (PEM) and what happens in the body during PEM.
For this study, a doctor from the DOMINO research team will visit you at home. They will also make a brief follow-up visit to collect a small blood sample while you are experiencing PEM. This allows them to examine changes in your blood during an episode of PEM.
If you participate in both studies, your data will become part of the NMCB biobank. You can choose whether or not to participate in the DOMINO project. If you participate only in NMCB and are visited at home, the visit will be carried out by an NMCB nurse.
Note added by the NMCB team (October 2026): This research even attracted national media attention. Read our post and the De Volkskrant article via this link.
Meer informatie
If you would like to learn more about NMCB and its research, visit the website: www.nmcb.eu. You can also register to participate or submit a question via the contact form. The NMCB website also features a video about the home visits.
The April 2025 issue of Lees ME 52 includes an interview with Niek, an NMCB nurse, and the personal account of a participant who took part in the research at the Amsterdam research site. You can also read accounts from participants who have been visited at home on our own participant stories page.