MedUni Vienna coordinates new EU research project on ME/CFS

DISCOVER-ME is led by immunologist Eva Untersmayr-Elsenhuber from the Center for Pathophysiology, Infectiology and Immunology at MedUni Vienna. Untersmayr-Elsenhuber is also one of the two heads of the National Reference Center for Post-Viral Syndromes (PAIS), founded in 2024, and a recognized expert in ME/CFS and Post Covid.

High Disease Burden and Long Paths of Suffering

"Mehr als 60 Prozent der Patientinnen und Patienten sind nicht arbeitsfähig, etwa 20 Prozent sind so schwer von der Erkrankung betroffen, dass sie an Haus oder Bett gebunden sind," explained Untersmayr-Elsenhuber. The actual frequency of the disease is estimated to be as high as 70 million affected individuals worldwide – significantly higher than previously assumed.

Data from more than 700 ME/CFS patients and nearly 200 control persons are to be incorporated into the study. In a first step, the consortium plans to collect a total of 2,000 datasets in order to identify different disease manifestations.

This is to be followed by a comprehensive biological characterization using samples from several independent European biobanks. Among other things, changes in the immune system, metabolism, hormonal balance, and mitochondrial function will be examined. Large molecular datasets are also to be analyzed.

Biological Subtypes as the Key

A central concern of the project is to identify reproducible biomarkers and to subdivide ME/CFS into clinically relevant subtypes based on biological mechanisms. In this way, diagnoses could be confirmed earlier in the future and therapies could be tailored more precisely to the respective disease mechanisms of individual patient groups.

"Unser Ziel ist es, Patientinnen und Patienten künftig früher eine gesicherte Diagnose und eine auf ihre individuellen Krankheitsmechanismen abgestimmte Behandlungsperspektive anbieten zu können," said Untersmayr-Elsenhuber. The diagnosis of the complex disease, which affects the immune, nervous, and hormonal systems as well as energy metabolism, is currently made solely on the basis of clinical criteria; other causes of individual symptoms must first be carefully excluded.

According to research data from MedUni Vienna, it takes an average of five years to receive a diagnosis in Austria, Germany, and Switzerland. This costs "valuable time," as the university emphasized. Characteristic of the disease is the so-called Post-Exertional Malaise (PEM): a pronounced, often delayed worsening of symptoms or the addition of new complaints after even mild physical or mental exertion.

Post-Exertional Malaise as the Leading Symptom

The disease often occurs after infections; in addition to Covid-19, the Epstein-Barr virus (EBV) or influenza, for example, are known triggers. Other triggers such as toxins or trauma are also being discussed. The number of those affected rose sharply due to Covid-19 illnesses and continues to rise.

In the pharmacological part of the project, more than 9,000 already known active substances are to be examined for their suitability against ME/CFS using computer simulations. The goal is to select 20 to 50 particularly promising drugs, which will be researched further in subsequent projects.

Computer-Assisted Drug Search

The socioeconomic costs of the disease in Europe are estimated at around 40 billion euros per year – with data collected after the SARS-CoV-2 pandemic indicating that these costs continue to rise.

The project is intended to improve the scientific basis for future therapies and at the same time pave the way for personalized treatment approaches. Untersmayr-Elsenhuber sees this as a decisive step toward noticeably improving the care of those affected, who have often waited years for a confirmed diagnosis.

Embedded in Horizon Europe

The project is part of the EU framework program for research and innovation Horizon Europe and is coordinated internationally. In addition to the aforementioned universities and research institutions, further partners from across Europe are involved in order to strengthen the data base and the comparability of results.

With the official launch on July 1, the project phase of DISCOVER-ME begins, during which the data and biobank structures will first be set up, patients will be recruited, and initial analyses will be prepared.

MedUni Vienna sees the project as a strengthening of Vienna as a location in European disease research and as a response to a patient group that has so far been underserved in medical care. (APA, 30.6.2026)