Long Covid: What those affected need to know now!

Long Covid: What those affected need to know now!

In Germany, an estimated 39 million people were infected with the coronavirus during the COVID-19 pandemic between 2020 and 2023. Of these, around 10 percent suffer from the consequences of Long Covid, a disease that can also occur after milder courses and even during the acute illness. The Long Covid phenomenon, also known as postacute sequelae of coronavirus disease 2019 (PASC), refers to symptoms that persist more than three months after the original infection and can severely affect the quality of life of those affected. These symptoms can last at least two months and vary greatly in severity.

A research project called DIPEX Germany, which is based at the Brandenburg Theodor Fontane Medical School (MHB), has documented the experiences of 43 affected people. These stories have been collected with the aim of improving public understanding of the impact of Long Covid. The results were presented on February 20, 2025 during a symposium at the MHB.

Experiences and challenges of those affected

Stephan Bergmann and the other participants report a variety of symptoms, including fatigue, breathing difficulties and psychological problems such as anxiety and depression. Nearly 45 percent of study participants in a meta-analysis that examined 735,006 people reported having at least one unresolved symptom after a COVID-19 infection. The frequency of Long Covid is particularly high in hospitalized patients, where the numbers are between 50 and 70 percent, while in the non-hospitalized group they are only between 10 and 35 percent.

The interview partners vary in age, living and living situation as well as how the illness affects their everyday life. Dr. Anke Spura, an expert at the Federal Institute for Public Health, emphasized the importance of reliable information for those affected, while Dr. Judith Bellmann-Strobl pointed out that long/post-COVID must be viewed as a chronic disease with unclear causes. She called for causally oriented therapy studies in order to be able to help patients more effectively.

Scientific perspectives and further findings

Researchers have found that Long Covid can affect a variety of body systems, including the cardiovascular and neurological systems. Suggestions for the mechanisms of Long Covid include increased cytokine production, direct cell damage and vagal nerve disruption. In addition to fatigue, common symptoms include shortness of breath, chest pain and loss of taste and smell.

Bianca Erdmann-Reusch highlighted the connection between COVID-19 and chronic fatigue syndrome. Prof. Dr. Christine Holmberg explained that the stories of those affected help to better understand subjective meaning-making. Dr. Martin Spielhagen from the DiReNa health network pointed out that the DiReNa website is an important resource for diagnostics and follow-up care.

There is agreement among experts that those affected must be taken seriously as experts in their own illness. The website krankserlebnisen.de, on which the stories were published as part of DIPEX Germany, also offers information on other diseases such as AD(H)D, breast cancer and type 2 diabetes. The project aims to not only document personal experiences, but also to promote research in order to ultimately develop long-term effective treatment options.

Ongoing research is crucial to fully understand the pathophysiological mechanisms of long COVID and to formulate prevention and treatment strategies that are effective and tailored to the needs of individual patients.