Over 1.5 million patients in Germany
According to the study, there were around 871,000 active Long COVID and 650,000 ME/CFS cases in Germany in December 2024. In total, more than 1.5 million people in Germany are affected by these severe, chronic multisystemic diseases, for which there is currently no effective treatment or cure. Both diseases often lead to permanent functional limitations and incapacity to work.

Personal impact and economic burden
Long COVID and ME/CFS result in the loss of everyday life function, work and social participation for many patients. Young people are often no longer able to continue their education. Family carers take on a large part of the care under great strain, all while travelling long distances to seek diganosis and treatment.
At a societal level, there are also considerable costs: for medical care, nursing care, loss of work, social benefits and lost tax revenue. Companies suffer productivity losses and purchasing power is lost.

Infection incidence underestimated - diseases continue to increase
Although the pandemic is considered to be over, the report uses innovative measurement methods and data collection to show that SARS-CoV-2 continued to circulate in several waves of infection in 2024. This "hidden" infection pattern has continued to contribute to the emergence of new Long COVID and ME/CFS cases. A decline in the number of cases is not foreseeable.

Research expenditure disproportionate to the damage
Joerg Heydecke, Managing Director of the ME/CFS Research Foundation and co-author of the study, warns:
"The calculated damage of 63 billion Euros is currently offset by only 15-20 million Euros a year in public funding for diagnostics and therapy research. This is neither medically nor economically justifiable. A targeted and sustainable expansion of biomedical research could avoid considerable costs in just a few years - and give hundreds of thousands of patients new prospects for life and work."

Aim of the study: initiate debate, improve care
With the report and the specially-developed data model, the ME/CFS Research Foundation and Risklayer want to initiate a broad debate on the occasion of International ME/CFS Day: How can the healthcare system, how can policymakers respond appropriately to the growing scale of post-infectious diseases? One thing is clear: the investments made to date are far from sufficient.

Call from the scientific community: strengthen clinical research now
Prof. Dr Carmen Scheibenbogen (Charité University Medicine Berlin) emphasises:
"These figures show how high the social damage caused by Long COVID and ME/CFS is. Without effective therapies, the costs will remain high in the long term. However, current research results already show initial therapeutic successes and prospects. Further therapeutic approaches should be clinically trialled as soon as possible. We urgently need more financial support for this, all the more urgently as the USA is unfortunately trying to stop most research approaches and planned therapy studies. Determined investment in biomedical research, especially clinical research, would probably make real prospects of a cure possible for some of the patients in a few years' time."

About the methodology of the study
The study combines data from emergency departments (DGINA), intensive care units (DIVI register), wastewater measurements (AMELAG) and international research findings. The model developed calculates societal damage on the basis of proven methods for disaster impact assessment - including economic, medical and social effects at various levels. The team behind the report incorporated patient and policy perspectives, and included experts from Karlsruhe Institute of Technology, the Australian National University, and the University of Adelaide.

Healthcare emergency for ME/CFS: an untenable situation
ME/CFS has been recognised by the WHO since 1969, but is still largely ignored in Germany. Diagnosis is complex, effective therapies are lacking, symptomatic medication is rarely prescribed and hardly ever reimbursed.
In 2024, there were only very few specialised outpatient clinics in Germany. Many patients are permanently unable to work or in need of care. Their medical care and social security is often precarious.