The ME/CFS research landscape, mapped
It is a common complaint that nobody knows what ME/CFS research is actually happening. Increasingly, that is no longer true. The ME/CFS Research Register is a curated, publicly browsable index of ME/CFS research, maintained by the ME/CFS Research Foundation.
As of 2026 it catalogues 149 research projects (from 2019 onward) plus research networks, publications, events, research types, research areas, working groups, people, and organisations. Each project entry carries its status (ongoing or completed), country, principal investigator, organisations, research period, research types, and research areas. Current scope: Germany, Austria, Switzerland, the Netherlands, Norway, and Iceland, with more planned.
Why this matters to patients and researchers alike. It makes duplication visible, makes gaps observable, and gives funders a map of who is already studying what. If a project you care about exists, you can find out; if a whole area is empty, that is now visible too.
The caveats. It is a beta product, curated by one foundation, and provided “without any guarantees”; it reflects voluntary reporting and may under-count unpublished or non-regional work. It indexes research activity — it does not publish biosamples or participant data (that is the biobanks’ job).
How to use it. Before proposing new work, check the register. Before assuming “no one is studying this,” check the register. It is a small, concrete step toward a field that knows itself.