Background interview on the study "The rising costs of Long COVID and ME/CFS"

The interview with two modelling experts James Daniell and Johannes Brand from Risklayer provides exciting insights into the joint project work on the recent study on the prevalence and costs of Long COVID and ME/CFS. They talk about their motivation, the challenges of data and modelling, surprising results, and answer questions from the community. 

On 12 May 2025, the joint study by Risklayer and the ME/CFS Research Foundation was published (link to website). The press has reported extensively on the key findings regarding the prevalence and, above all, the high social costs of both diseases (e.g. in Der Spiegel, Frankfurter Allgemeine Zeitung/FAZ, Stern, Manager Magazin, Tagesspiegel, Deutsches Ärzteblatt, Frankfurter Rundschau, N-TV, Neue Zürcher Zeitung/NZZ). Many researchers, patient organisations and politicians also took up the findings. Methodologically, the study is based on the modelling of natural disaster costs and was applied in this form for the first time to the follow-up costs of major diseases.

All information and data from the study (German and English):

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In the 30-minute interview, the Risklayer experts explain their role in this challenging project and provide in-depth insights into the work of the project team from Germany and Australia. They speak openly about the limitations of the study, how to deal with missing data (e.g. "unreported cases"), possible distortions in the model, and why the team decided to estimate the results conservatively, or whether higher prevalence and cost estimates would also be realistic. And, of course, they address the question of how the costs of ME/CFS and Long COVID compare to natural disasters.

Furthermore, the interview illustrates how the Risklayer and ME/CFS Research Foundation team worked together, what motivated us to do this work, and how we dealt with the challenges of complex issues and limitations.

Subtitles available in 🇩🇪 and 🇬🇧 (How do I turn on captions in YouTube videos?)

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How can you support the work of the ME/CFS Research Foundation?

There is still a long way to go before diagnosis, care and treatment of ME/CFS patients will one day become a medical and social standard. We at the ME/CFS Research Foundation are focussing on biomedical research, which we see as the key element in solving these problems (more on this in our research funding strategy and in our half year report summer 2025, which summarises our activities). To do this, we need extensive support from private donors – those affected, relatives, families, friends, associations, schools, networks, companies, initiatives, event organisers and all supporters. And if you are not able to provide direct support, you can share our story and motivate others to help. Because only together can such a feat be achieved.

We fully translate donations and other support into scientifically excellent research, networking and ultimately visible successes, i.e. better ME/CFS diagnostics and therapies. We are happy to work together with other organisations and initiatives - please contact us!

Thank you for your support!