Important source of reliable information

Interview partners represent a wide range of circumstances in terms of age, housing and life situation, and changes in daily life due to the illness. Many stories describe the challenges involved, and the difficulty of getting appropriate care, but also the small details that give courage. Funding for the sections COVID-19 and Long-/Post-COVID came from the Federal Institute of Public Health BIÖG.

The new module was first publicly presented at a symposium hosted by the MHB in Brandenburg an der Havel on 20 February 2025. In her opening speech Dr. Anke Spura (BIÖG) underlined the importance of access to reliable information and exchange for affected persons, and she called the project a valuable contribution towards this end.

Dr. Judith Bellmann-Strobl (senior physician at the outpatient unit of the Experimental and Clinical Research Center) described Long-/Post-COVID as a chronic post-acute infection of unexplained origin. In conclusion of her presentation, she stressed the need for primarily cause-oriented therapy studies and extensive provision of specialized assistance. Her demand was endorsed by Bianca Erdmann-Reusch, specialist for internal medicine, palliative care and psycho-oncology, whose lecture focused on the Chronic Fatigue Syndrome and ME (myalgic encephalomyelitis), a little-researched phenomenon. This severe neuro-immunological disease frequently results in a high degree of physical handicap and thus in social hurdles: “Affected patients are faced with isolation, financial risks and a lack of rehabilitation concepts. What they need are experts as their personal guides through the jungles of health system and social legislation.”

Anne Thier coordinates the activities of DIPEx Germany. She pointed to the wide range of patient experiences – from weeks to years of exhaustion, from self-help to medical uncertainties – and to the relevance of these perspectives for a balanced evaluation. She gave thanks to all participants for their moving stories.

According to Prof. Dr. Christine Holmberg, director of the institute, narratives are always context specific: “This facilitates an understanding of subjective attempts to find meaning and makes the stories accessible to research. Each story of loss contains hope and vice versa. These contrasts invite us to acknowledge trauma as well as resilience.” The interviews reveal the tensions involved and the interplay between suffering and self-empowerment. Health professionals now need to acknowledge these aspects and integrate them into care provision, so Prof. Holmberg.    

Presentations were followed by discussions between experts and audience on how to improve care provision. Dr. Martin Spielhagen from the Brandenburg health network DiReNa referred to the DiReNa Website as a resource for the population in Brandenburg and sustainable support for individuals affected by Post-COVID.

There was general consensus that affected individuals must be taken seriously as experts for their illness and that their stories supply information and promote empathy and understanding.

This is the link to patient reports: https://www.krankheitserfahrungen.de/module/long-post-COVID.

Scientific contact:
Prof. Dr. Christine Holmberg
Director, MHB Institute of Social Medicine and Epidemiology
Phone: +49 3381 41 1281
E-Mail: christine.holmberg@mhb-fontane.de

_{Background information:}

_{Dr. Anke Spura is in charge of section Q4 (research coordination, cooperation and knowledge transfer) at the Federal Institute of Public Health (Bundesinstitut für Öffentliche Gesundheit / BIÖG). This includes strategic networking of departmental research and knowledge transfer between research and practice. Dr. Anke Spura represents the BIÖG in Federal panels on departmental research and is active in research associations and scientific bodies such as EU Joint Action PreventNCD, “Lessons learned from Covid: Effective health communication in crises and beyond” (https://www.bioeg.de/forschung/eingeworbene-forschungsprojekte/). She is a co-editor of specialist publications and in charge of health-related publication series.}

_{Dr. med. Judith Bellmann-Strobl is a senior physician of the neuroimmunology outpatient unit at the Experimental and Clinical Research Center (ECRC), a joint facility of the Max Delbrück Center and Charité – Universitätsmedizin Berlin. The expert in Multiple Sclerosis and other neuro-immunological disorders is responsible for Post COVID consultation hours at the ECRC. The focus of her pertinent research is on drug therapies and – in the context of outcomes research – on optimization of diagnostics and treatment.}

_{Bianca Erdmann-Reusch, specialist in internal medicine, palliative care and psycho-oncology, has been heading the department of oncology and hematology at the Klinik Bavaria in Kreischa for many years. Her key interests are the treatment and rehabilitation of patients with oncological and hematological complaints and Chronic Fatigue Syndrome (ME/CFS) as part of the CFS_CARE study conducted at the Institute of Medical Immunology, Charité Berlin.}

_{Prof. Dr. Christine Holmberg is Professor of Social Medicine and Epidemiology at the Brandenburg Medical School Theodor Fontane. Her research is concerned with the social and political conditions and implications of illness and health, decision-making in prevention, inclusion of patient experiences, patient involvement, and the advancement of Mixed-Methods study designs. She has been in charge of several major studies financed by, for example, the Federal Ministry of Education and Research BMBF (ELSA; 01GP1301B) and the US-American National Cancer Institute. As the project leader of krankheitserfahrungen.de (DIPEx Germany) she participated in an international study on COVID-19 experiences together with colleagues from Dipexinternational.org.}

_{Anne Thier is a research assistant at Prof. Holmberg’s Institute. Focal points of her work are optometry, qualitative research methods and outcomes research in the field of ophthalmology.}

_{Further information on krankheitserfahrungen.de: Apart from COVID-19, the current website www.krankheitserfahrungen.de offers ten further sections of patient experiences with the following topics:  AD(H)S in children and adolescents, Breast cancer, Chronic inflammatory intestinal diseases, Chronic pain, Colon cancer, Diabetes Type 2, Epilepsy, Eating disorders: Anorexia and Bulimia, Medical rehabilitation and Prostate cancer. The website is part of DIPEx Germany, a database project on individual patient experiences located at the MHB Institute of Social Medicine and Epidemiology, currently funded by the association Krebsallianz.}

_{¹krankheitserfahrungen.de (2025): Stephan Bergmann wants patients‘ stories to be used as a source of information. Available online at: https://www.krankheitserfahrungen.de/module/long-post-COVID/personen/stephan-bergmann/zudem-wuenschte-er-sich-dass-die-geschichten-der-patienten-als-wissensquelle-genutzt-wird, last update 31 January 2025, last check 21 February 2025.}

_{DIPEx: DIPEx Germany is a member of the umbrella organization DIPEx International (www.dipexinternational.org). Activities of the organization and its subsections aim to improve people’s understanding of health and illness. Experiences are collated, analyzed and made available to the general public pursuant to consistent scientific standards, for the benefit of affected individuals and their families, health professionals, political decision-makers and researchers. International collaboration serves to build a unique collection of experiences and permits comparative analyses across countries.}