In November 2026 the German Ministry of Research, Technology and Space announced a National Decade Against Post-Infectious Diseases and pledged a total of half a billion euros for further research into diseases – including ME/CFS – with a stated goal of deciphering their causes and mechanisms and to develop new treatment options.
As part of this drive, data from the German National Cohort (NAKO) – NAKO Gesundheitsstudie – is being harnessed. NAKO is Germany’s largest long-term study on research into widespread diseases and holds circa 28 million biosamples from 205,000 randomly selected volunteers aged 20 to 69. Begun in 2014, participants are assessed using standardised medical evaluations in 18 study centres – including over 30,000 who have undergone MRI scans. The initial examinations were carried out between 2014 and 2019, then between 2019 and 2024 (straddling ‘the COVID years’) with the third study beginning in May 2024.
As may be appreciated, NAKO provides long-term data to enable before and after comparisons of health and biosamples before, during, and after an infection – crucially SARS-CoV-2 COVID infections. For post-infectious diseases such as ME/CFS and long-COVID this is crucial data as it will allow any immune dysregulation or disease processes to be observed.
The incidence of post infectious diseases has risen over the past number of years as has the medical, societal and economic burden on states. According to the ME/CFS Research Foundation post-infectious diseases or post-acute infection syndromes (PAIS), such as ME/CFS and Long COVID/post-COVID syndrome, affect over 1.5 million people in Germany alone (as of December 2024). Their research suggests that the societal cost of both diseases amounted to €63 billion in 2024 and, for the period 2020-2024, the cumulative cost was around €250 billion.
As Dorothee Bär, German Federal Minister of Research, Technology and Space, stated when launching the €500 million initiative
With the National Decade, we are opening a new chapter in research into these diseases. We need a long-term strategy to better understand the causes and mechanisms of post-infectious diseases and to sustainably improve the care of those affected. From many conversations, I know what a heavy burden these diseases represent for those affected and their families. The need for research is enormous: There are still no simple solutions or therapies for ME/CFS and post-viral autoimmune diseases, and previous scientific studies demonstrate the complexity of the disease mechanisms.
One key project is EpiPAIS – Epigenetic Patterns in the Pathogenesis of Long COVID – co-ordinated by Prof. Annette Peters. In EpiPAIS, around 9,000 blood samples are being examined for epigenetic changes that could contribute to the development of Long COVID or similar illnesses. Epigenetic changes are like switches and regulators that determine which genes in a cell are active, when and how.
The EpiPAIS project combines both molecular research and population-wide health data. This enables researchers to better understand how and which biological processes influence long-term health after infections. Modern statistical methods and machine learning will be used to analyse individual disease progression and risk profiles. In total 4,500 NAKO participants’ data will be involved principally those whose to data and biosamples allow comparisons before, during, and after the COVID pandemic
To form the bedrock of EpiPAIS, a comprehensive survey of NAKO participants is planned for 2026. The survey will collect information on symptoms, infection progression and long-term effects, and complements the ongoing third study (10-year follow-up) and enables an assessment of the frequency and severity of post-infectious diseases in the population – including Long COVID.
Certain NAKO study centres are already conducting extensive genome sequencing of 35,000 biosamples which will provide an important basis for a more precise understanding of the genetic and molecular factors that lead to post-infectious diseases. “We expect that this will reveal new pathophysiological mechanisms and enable the development of targeted therapies,” says Prof. Annette Peters.
In total 4,500 NAKO participants’ data will be involved principally those whose to data and biosamples allow comparisons before, during, and after the COVID pandemic. Matters such as inflammation activity, vascular dysfunction, mitochondrial dysfunction and dysregulation in immune system will be high-level areas of interest but it is acknowledged that a single trigger is probably not a play in PAIS rather an interaction of several factors depending on the infection and a person’s own predisposition.
