Regarding the BMG Long COVID Initiative

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Telerehabilitation programmes that are accessed from home can provide tangible benefits to people with Long COVID symptoms. This is the result of a comprehensive review. The researchers evaluated 28 international studies comprising a total of around 1,400 participants, in which these programmes were used. Telerehabilitation programmes are therapeutic interventions that are delivered remotely and not in a local doctor’s surgery or a hospital. This is done via devices such as computers or smartphones that have the necessary app installed. The studies reviewed show significant improvements of the participants’ physical capacity. On average, patients were able to walk longer distances after having completed a telerehabilitation programme than before. They also found it easier again to stand up from a chair. Their shortness of breath and fatigue lessened, as well. The term fatigue describes a state of permanent, severe physical and mental exhaustion, which does not improve with sufficient sleep or rest. There was, however, no measurable impact of telerehabilitation on mental health and specifically on anxiety and depressive symptoms. Pulmonary function, too, only improved on one score. No serious adverse events were reported across the studies. However, most studies did not focus on investigating the programmes’ safety. The researchers emphasize that digital care services need to be complemented by targeted support to treat mental health as well as pulmonary symptoms. They also stress the importance of larger studies in order to better assess the safety of telerehabilitation programmes for those affected.

Telerehabilitation programmes can support Long COVID patients

BMC Pulmonary Medicine is an open-access academic journal publishing articles on all aspects of the prevention, diagnosis and management of pulmonary disorders. All articles are peer-reviewed by independent experts.

BMC Pulmonary Medicine

The fourth International ME/CFS Conference, organised by the Charité Fatigue Center (CFC) and the ME/CFS Research Foundation, was held in Berlin on 7 and 8 May 2026. The event was addressed to doctors and other medical professionals, researchers and experts from the fields of medicine and biology. The focus was on the latest findings on the disease mechanisms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and new developments in diagnosis and treatment research.&nbsp; Research into Long COVID was also given comprehensive coverage.&nbsp; Viral infections are known to trigger ME/CFS. Some of those affected develop this disease following an infection with the SARS-CoV-2 coronavirus. &nbsp;ME/CFS is typically accompanied by profound exhaustion and other symptoms that can significantly restrict everyday life and, in some cases, can lead to the need for long-term care. The Conference also focused on research into the biological underpinnings of ME/CFS. Presentations shared current findings on genetic factors, imaging and biomarkers. Biomarkers are measurable biological indicators, such as distinct substances in the blood or cellular changes, that can help to identify a disease. Moreover, discussions addressed changes of the body’s vascular, nervous, immune and metabolic systems that are related to the condition.&nbsp; On the second day of the Conference, current data from clinical trials and new approaches to treating ME/CFS and Long COVID were presented. Clinical trials are scientific studies involving patients to investigate the efficacy and safety of new treatments. One focus was on interventions that target immune dysregulation. Moreover, a German-language symposium was held to summarise relevant study results for the wider public. Once more, this event was instrumental in strengthening international scientific exchange and advancing the development of diagnostic and treatment approaches to ME/CFS and Long COVID. The <a href="https://events.mecfs-research.org/en/events/conference_2026" target="_blank" rel="noopener noreferrer">videos of the presentations</a> are freely available on the website of the ME/CFS Research Foundation. &nbsp;

Fourth International ME/CFS Conference in Berlin

The Charité Fatigue Centre is a specialised institution of the Charité – Universitätsmedizin Berlin, which deals with the diagnosis, care and research on fatigue syndromes such as ME/CFS. By combining clinical experience and current research, new therapeutic approaches are to be developed and the care of those affected improved.&nbsp;

Charité Fatigue Centrum

The ME/CFS Research Foundation is a non-profit foundation that promotes biomedical research on ME/CFS and related diseases. The aim is to use scientific findings to better understand the causes of the disease and to enable effective therapies.&nbsp;

ME/CFS Research Foundation

An international team of doctors and scientists has compiled a summary of the current state of research around the world on the biological causes and disease mechanisms of Long COVID. In order to do so, the authors contextualised the findings to date on the syndrome to better explain the biological processes that take place within the body.&nbsp;
Despite important scientific insights already having been gathered, according to the authors the specific processes that occur in the body in connection with Long COVID are not yet fully understood. The evaluation did however show that multiple processes may occur in the bodies of people with Long COVID, sometimes even simultaneously. These include chronic inflammatory responses and an immune system that attacks the person’s own body. Residual components of the SARS-CoV-2 coronavirus as well as tiny blood clots can also play a role. These blood clots disrupt the flow of blood so that the organs at times may receive insufficient oxygen. Additionally, there are indications of damaged mitochondria (the powerhouse of the cell) and of a malfunctioning nervous system. These processes and changes were observed in differing combinations and severities in people with Long COVID, which led to differing clinical presentations of the syndrome according to the authors. Depending on the person, Long COVID may exhibit different symptoms most prominently, such as extreme exhaustion after physical activity, problems with memory or with the cardiovascular system.
The authors emphasise that Long COVID remains a major public health and economic challenge around the world. They highlight that research needed to identify definitive biomarkers in the blood or tissue for reliable diagnoses. These findings were also important to in future be able to develop tailored treatments for people with differing phenotypes of Long COVID. Until then, those affected should receive high-quality care that helps alleviate the symptoms and improve quality of life. The treatment should correspond with the state of the art (evidence-based care). They believe that close cooperation between the different fields of medicine as well as at international level is of central importance to help treat those affected.

Review article describes current status of research on the disease mechanisms of Long COVID

Communications Medicine is an open access journal by the Nature publishing group. The journal publishes peer-reviewed articles on topics that concern public health and clinical research. Another focus is on translational medicine, which involves the targeted translation of new research findings into actual patient care.

Communications Medicine

A US study has examined the prevalence of Long COVID and how many of those affected recover over time. This involved analysing survey data from US adults. The data stem from the annual National Health Interview Survey (NHIS) for the years 2022 to 2024 and are strongly representative of the population as a whole. The participants provided information as to whether they had ever had Long COVID and whether the symptoms were still ongoing. In total, more than 40,000 adults were included.
The findings show that the percentage of adults reporting prior SARS-COV-2 infection increased substantially in the period surveyed, from roughly 40% in 2022 to around 60% in 2024. Among those with prior infection, almost 20% reported symptoms of Long COVID in 2022, while this percentage declined to roughly 14% by 2024. The percentage of those who had recovered from Long COVID rose from around 51% to almost 60% over the same period.
Certain sub-groups within the survey participants were affected by Long COVID more frequently. These included women, persons aged between 35 and 64 as well as people with low household income. Recovery from Long COVID was less likely in adults aged over 35 than in younger adults.
The survey findings show that some of those affected recover from the illness over time and that the prevalence of Long COVID after an infection has decreased over the period surveyed. At the same time, the number of persons affected remains high overall, and a considerable percentage of those are still suffering from symptoms. Because the treatment options for Long COVID are currently limited, the findings highlight the importance of further research into disease mechanisms and potential treatment approaches.

Long  COVID over time: Prevalence and recovery rate

JAMA Network Open is an open-access medical journal that publishes peer-reviewed studies from all fields of health research.&nbsp;

JAMA Network Open

The National Health Interview Survey (NHIS) is an annual survey with a large sample of participants from the US population that collects data on health, illnesses and healthcare provision. The survey data serve to help obtain a comprehensive overview of public health in the US.

National Health Interview Survey 

On 13 March 2026, Federal Minister of Health Nina Warken visited the specialised outpatient clinic for post-acute infection and vaccination syndromes (PAIVS) in children and adolescents at the University Hospital Carl Gustav Carus Dresden (UKD). There she informed herself among other things about the “PEDNET Long COVID” project, a network of 65 clinics and research institutes that receives 41 million euros as part of the Federal Ministry of Health’s <a href="https://www.bundesgesundheitsministerium.de/ministerium/ressortforschung/handlungsfelder/forschungsschwerpunkte/long-/post-covid" target="_blank" rel="noopener noreferrer">funding priority “Pilot schemes on care for children and adolescents with Long COVID and conditions with similar causes or manifestations”</a>. The project investigates and provides multidisciplinary and cross-sectoral healthcare services with a good regional fit to enable medical care that is tailored to the individual needs of the children and adolescents living with these conditions.
Minister Warken met with the clinic and project managers, doctors and nurses, hearing among other things about the day-to-day work of staff and the approaches used to treat the paediatric patients. Children and adolescents affected as well as their families shared accounts of their daily lives and what they do to cope with the condition.
The visit took place within the context of the “Alliance for Post-Infectious Diseases: Long COVID and ME/CFS” launched in cooperation with the Federal Ministry for Research and Technology (BMFTR). The aim of this Alliance is to build an even closer network of researchers and to address society as a whole.

Federal Minister Warken visits specialised outpatient clinic for children and adolescents in Dresden

The Federal Ministry of Health is a supreme federal authority of the Federal Republic of Germany. It has its headquarters or first official seat in the federal city of Bonn and its second official seat in Berlin. The federal minister responsible in the Scholz cabinet since 8 December 2021 is Prof. Dr. Karl Lauterbach of the SPD.

Federal Ministry of Health

The Robert Koch Institute (RKI) has published a review on Long COVID in adults. To this end, the scientists analysed the international research literature on Long COVID published between January 2020 and June 2025. According to the review, about 10 to 15 percent of adults experience Long COVID symptoms in the 12-week period after infection with the SARS-COV-2 coronavirus. These include, among others, fatigue, concentration problems and shortness of breath. In addition to these Long COVID symptoms, other possible long-term health effects of COVID-19 include organ damage, worsening of pre-existing conditions or certain newly diagnosed illnesses.
The review also showed that women, unvaccinated individuals and people with pre-existing health conditions have a higher risk of developing Long COVID symptoms. About one in four to one in five of those affected report that their symptoms significantly limit their ability to perform daily activities. Furthermore, the literature review showed that in most affected individuals, Long COVID symptoms resolve within a year. However, in approximately 15&nbsp;percent of those affected, the symptoms continue to persist beyond that period. The symptoms can significantly reduce the quality of life of those affected and drastically restrict their participation in everyday life.
The scientists emphasise that Long COVID is not only a burden for those affected and their families, but also continues to pose a major challenge to public health and the healthcare system. They highlight the need for further research into the causes and treatment options for Long COVID and other post-acute infection syndromes and of integrating the findings into the medical care provided to those affected.

Robert Koch Institute (RKI) publishes stock-taking report on the current situation regarding Long COVID in adults

The Robert Koch Institute (RKI) is a federal institute in the portfolio of the Federal Ministry of Health. The RKI is the central institution of the Federal Government in the field of disease surveillance and prevention and thus also the central institution of the Federal Government in the field of application and action-oriented biomedical research. The core tasks of the RKI include the detection, prevention and control of diseases, especially infectious diseases. It develops scientific findings as a basis for health policy making, advises the responsible federal ministries, notably the Federal Ministry of Health (BMG), and informs the expert public and, to a greater extent, the population at large.

Robert Koch Institute (RKI)

Ronja Büchner and Prof. Georg Schomerus show in their guest article that people with Long COVID and post-vac syndrome often experience stigmatisation and psychologisation.

“‘Have you considered that it could be burnout?’—psychologization and stigmatization of self-reported long COVID or post-COVID-19 vaccination syndrome”

Ronja Büchner, M. Sc., is a psychologist and research associate in the working group “Psychiatry and Society” led by Prof. Georg Schomerus at Leipzig University. Within the working group, she shares responsibility with Prof. Schomerus for the topics Long COVID, ME/CFS and PAIS, and her PhD deals with the stigmatisation of people with post-viral diseases. She is also training to become a psychology-based specialist in psychotherapy.
Prof. Dr. Georg Schomerus is Chair of the Department of Psychiatry and Psychotherapy at University of Leipzig Medical Center. He has been carrying out research into the stigma of mental illness for more than 20 years. With the beginning of the COVID-19 pandemic, this focus extended to include the stigma of Long COVID and ME/CFS. He is the author of more than 250 academic publications and is viewed internationally as one of the leading researchers in the field of stigmatisation.&nbsp;

Guest article: Ronja Büchner & Georg Schomerus

In December 2025, the Network of University Medicine (NUM) announced the establishment of a new working group on post-infectious diseases. The working group is part of the Specialist Network for Infections, which is responsible within the NUM Study Network for researching infectious diseases.
The new working group aims at specifically researching conditions that develop following an infectious disease. This also includes conditions such as Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
The plan is to not only support patients during the acute infection but provide follow-ups over a longer period of time after they have recovered. This way, potential long-term consequences can be detected and causal relationships between the initial infection and symptoms occurring later in time can be examined.
The research is based on various sources of information: clinical data, patient-reported treatment outcomes and biological samples. The aim is to find out, among other things, how often post-infectious diseases occur, who is particularly at risk and which biomarkers might be relevant in this context. The results of this research will inform the testing of new treatment approaches and preventive measures.
The working group is open to interested researchers from various disciplines and is intended to grow on an interdisciplinary basis across different locations.

The Specialist Network for Infections of the NUM Study Network establishes a new working group on post-infectious diseases

On 19 November 2025, Federal Ministers Nina Warken and Dorothee Bär launched the new “Alliance for Post-Infectious Diseases: COVID-19, ME/CFS” at a joint kick-off event in Berlin. This marked the beginning of a closer cooperation between the Federal Ministry of Health (BMG) and the Federal Ministry of Research, Technology and Space (BMFTR) on these conditions and also in the context of the recently announced National Decade against Post-Infectious Diseases. The event focused on the research into Long COVID and ME/CFS, the provision of care to those affected and the successful education of children and adolescents living with one of the conditions as well as the consequences for working life. Experts from the respective fields were invited to enable better networking on these topics of relevance to our society as a whole. Going forward, more events are planned to be held under the auspices of the Alliance. The next opportunity for networking will be the <a href="https://www.tmf-ev.de/veranstaltungen/longcare-symposium-2026" target="_blank" rel="noopener noreferrer">NUM Convention</a>, which <a href="https://www.tmf-ev.de/veranstaltungen/longcare-symposium-2026" target="_blank" rel="noopener noreferrer">will take place on 22 January 2026</a>.

Federal Ministers Warken and Bär launch the "Alliance for Post-Infectious Diseases: Long COVID, ME/CFS"

Federal Minister of Research Dorothee Bär announced the National Decade against Post-infectious Diseases in November 2025. The initiative will allow for comprehensive research into post-infectious diseases such as Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).&nbsp;
The aim of the German government and the other health research partners is to strengthen research in a targeted way, thus gradually improving the care of affected patients in the long term. The initiative will run from 2026 to 2036. Total funding of 500 million euros is earmarked for this purpose. This should help accelerate research into underlying causes and disease mechanisms and aid the development of new treatment options.&nbsp;
Close collaboration between the Federal Government, academia, the health system, business and patients’ organisations should allow for faster implementation of new scientific findings into medical practice.&nbsp;

Federal Minister of Research announces National Decade against Post-infectious Diseases

The Federal Ministry of Research, Technology and Space (BMFTR) is a supreme federal authority of the Federal Republic of Germany. It has its headquarters or first official office in Bonn and its second official office in Berlin. Since 6 May 2025, the Federal Minister of Research responsible in Merz’s cabinet is Dorothee Bär from the CSU. The BMFTR provides funding for research into all areas of science and investigates new research topics.

Federal Ministry of Research, Technology and Space (BMFTR) 

In autumn 2025, the National Association of Statutory Health Insurance Physicians (KBV) published a new quality circle module for continuing medical education. It addresses the care of people with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Quality circles offer an opportunity for doctors and psychotherapists to exchange views on important topics with practical relevance. The KBV supports this type of continuing education by providing quality circle modules with appropriate recommendations for action as well as practical materials such as case studies and checklists. The new module on Long COVID and ME/CFS is based on existing scientific evidence as well as the recommendations contained in the Long COVID guideline, which was published by the Federal Joint Committee (G-BA) in <a href="https://www.bmg-longcovid.de/zeitstrahl/long-covid-richtlinie-wird-veroeffentlicht" target="_blank" rel="noopener noreferrer">December 2023</a>. It gives participants basic information on the definition, diagnosis and treatment of the diseases. A particular focus is placed on the specific needs of people with post-exertion malaise (PEM) and multi-disciplinary approaches to ensuring adequate care.&nbsp; With its service, the KBV aims to raise awareness among doctors and psychotherapists about Long COVID and ME/CFS and help ensure those affected receive care in line with the latest scientific findings. &nbsp;

New KBV quality circle module on providing care to people with Long COVID and ME/CFS

The National Association of Statutory Health Insurance Physicians (KBV) represents the interests of outpatient doctors and psychotherapists in Germany. One of its tasks is to ensure that outpatient medical care works as seamlessly as possible. In addition, the KBV supports medical practices by providing information and continuing educatio.&nbsp;

National Association of Statutory Health Insurance Physicians (KBV)

The second workshop of the “LongCARE” coordination project took place in Berlin on 16 October 2025. The project coordinates 30 different research projects into Long COVID that are funded by the Federal Ministry of Health (BMG). 60 people took part in the event, including representatives from the BMG, the funded projects, the project manager and the “LongCARE” coordinating agency.&nbsp; The workshop provided an important opportunity to further integrate the projects involved and to work on creating new joint initiatives. The participants updated each other on the status of their working groups and then held group work discussions on various topics including challenges in care and the use of digital tools (e.g. wearables). In a final step, each group presented the results in the form of brief presentations and discussed future steps together. Participants rated the event as a major success. For example, they were able to carry out important preparatory work for the “LongCARE” symposium scheduled to be held as part of the <a href="https://www.tmf-ev.de/veranstaltungen/longcare-symposium-2026" target="_blank" rel="noopener noreferrer">NUM Convention</a> on 22 January 2026. Preparations were also made for some of the projects to take part in the Digital Health Conference <a href="https://www.dmea.de/de/about/dmea" target="_blank" rel="noopener noreferrer">DMEA</a>, which is set to take place in Berlin from 21 to 23 April 2026. &nbsp;

“LongCARE” coordination project: second workshop in Berlin

“LongCARE” is the coordination project for the funding priority “Long COVID” by the Federal Ministry of Health. The project integrates and supports funded Long COVID projects. It also promotes an exchange between the projects involved and evaluates the measures taken. The coordinating agency mainly comprises representatives of TMF e.V. The Network of University Medicine (NUM) and the Association of the Scientific Medical Societies (AWMF) are major “LongCARE” partners.

“LongCARE” coordination project 

TMF e.V. (Technology and Methods Platform for Networked Medical Research) is an umbrella organisation for various German research projects and institutions from medicine, IT and related areas. It helps researchers to use data safely, clarify legal questions and work together to develop technical solutions. Its aim is to facilitate collaborative medical research.&nbsp;

TMF – Technology and Methods Platform for Networked Medical Research e.V.

Within the context of a longitudinal study in the UK, researchers examined whether people living with diabetes have a higher risk of developing Long COVID after infection with the SARS-CoV-2 coronavirus. To this end, they evaluated the data of more than 11,600 adults aged 16 years and over.&nbsp;
They looked at whether the participants had already had pre-pandemic diabetes in the years 2018 and 2019, based on self-report of a doctor’s diagnosis. Then they assessed who had developed Long COVID by the end of the follow-up period from 2022 to 2023. For the purposes of this study, Long COVID was defined as self-reported symptoms lasting more than 12 weeks after a COVID-19 infection that could not be explained by another cause.&nbsp;
The results showed that participants with pre-pandemic diabetes had a higher risk of developing persistent symptoms after a COVID-19 infection. This association remained even after adjusting for other factors such as age, sex or co-morbidities: In this case, the probability of developing Long COVID was approximately 14 per cent for individuals with diabetes and approximately 9 per cent for non-diabetics.
The researchers concluded from these results that doctors should be extra vigilant to pick up Long COVID symptoms in diabetics after a SARS-CoV-2 infection. The researchers also highlight the importance of effective diabetes management and blood sugar control, not only for acute COVID-19 outcomes, but also for preventing long-term effects.&nbsp;

People with diabetes more likely to develop Long COVID

The Journal of Diabetes &amp; Metabolic Disorders is an academic journal publishing recent findings on diabetes and other hormonal and metabolic diseases. All articles are peer-reviewed before publication.

Journal of Diabetic & Metabolic Disorders

The UK Household Longitudinal Study is the largest longitudinal household panel study of its kind in the UK. For the study, all members of approx. 40,000 households in the UK are interviewed at regular intervals. The study supplies various data on topics including health, work, education, income, family and social life. It started in 2009 and is based at the Institute for Social and Economic Research at the University of Essex.

The UK Household Longitudinal Study

A standardised, validated definition of Long COVID is still absent from scientific studies. A study published in the medical journal JAMA Network Open reveals that the prevalence of Long COVID depends on how the condition is defined in published literature.&nbsp; &nbsp;
For their investigation, the researchers used data of more than 4,500 adults from the INSPIRE registry. This registry enrolled adults who experienced acute illness with symptoms consistent with COVID-19 between December 2020 and August 2022. All individuals were tested for SARS-CoV-2 coronavirus and followed up for several months afterwards.&nbsp;
The study applied 5 different published definitions of Long COVID to the same individuals on the INSPIRE Registry who had tested positive for SARS-CoV-2. The definitions vary with respect to the number, duration and type of the symptoms needed for a Long COVID diagnosis. The prevalence rates of Long COVID diagnoses varied accordingly. Depending on the definition used, between 31 and 42 per cent of participants were diagnosed with Long COVID at 3 months. At 6 months, rates varied between 15 and 22 per cent depending on the definition used.&nbsp;
The study revealed that disparate definitions directly affect Long COVID prevalence estimates. This hinders not only the comparability of studies, but also the targeted identification and treatment of those affected. Therefore, the authors of the study are calling for standardised, clearly defined criteria for Long COVID &nbsp;

Persistent Variability in Long COVID Definitions

The Deutsche Ärzteblatt was started in the year 1872. It is an official organ of the medical profession. It is published by the German Medical Association and the National Association of Statutory Health Insurance Physicians. It is published by the Cologne-based Deutsche Ärzteverlag GmbH, and is its highest-circulation publication.

Deutsches Ärzteblatt

To better understand the needs and lived realities of children and adolescents with Long COVID and to give those affected the opportunity to say what they expect of society, the Federal Ministry of Health launched the "Long COVID among children and adolescents" participation process. The aim of the format, which ran from October 2024 to March 2025, was to gain more clarity around the care and support needs in practice and to identify potential measures for improvement. The final report that has now been published describes the process and the findings.
Federal Minister of Health Nina Warken: "I was impressed by the input from everyone involved in the form of detailed courses of action. At the same time, the feedback opened my eyes to the various areas in which action is still required in order to respond even better to the needs of children and adolescents with Long COVID in our society. We will make sure to deliver here!" The Minister expressed her thanks to everyone with a personal letter and a copy of the final report.&nbsp;

Long COVID participation process: Final report now published

A study led by researchers from the RECOVER Initiative examined to what extent social conditions in a person's daily life affect the risk of developing Long COVID. A link between social risk factors and negative health impacts – such as developing certain chronic health conditions – has already been established. However, to date there has been little research on a potential link between those factors and Long COVID.&nbsp;
In the study, researchers assessed data from 3,700 US-American adults. Social risk factors were identified using surveys and ZIP code data. The presence of Long COVID was assessed six months following infection with the SARS-CoV-2 coronavirus using the <a href="https://www.bmg-longcovid.de/zeitstrahl/neue-forschungsdefinition-fuer-long-covid" target="_blank" rel="noopener noreferrer">Long COVID Research Index</a>.&nbsp;
The study showed that participants with social risk factors were two to three times more likely to develop Long COVID than those without. Social risk factors include things like a low income, a lower level of education, language barriers or low social support. The researchers also found that the more risk factors a person faces, the greater their risk of developing Long COVID.&nbsp;
The researchers point out that further studies should examine whether these findings also extend to children, whether certain symptoms are linked to specific social risk factors and whether such living conditions also influence how long symptoms of Long COVID persist.&nbsp;

Social living conditions affect the risk for Long COVID

The journal Annals of Internal Medicine is published by the American College of Physicians and the American Heart Association. It is an ‘Open Access Journal’ and its articles are freely accessible on the Internet.&nbsp;

Annals of Internal Medicine

The RECOVER Initiative was launched by the National Institutes of Health (NIH) in the USA. It is a national research programme designed to better understand, prevent and treat Long COVID.&nbsp;

RECOVER Initiative

The guest article by Dr Lucas C. Adam and PD Dr Christiana Franke from Charité Universitätsmedizin Berlin discusses why we need personalised medicine to treat post-acute infection syndromes (PAISs) and what challenges arise from this.&nbsp;

From mild to severe symptoms – why we need personalised medicine to treat post-acute infection syndromes (PAISs)

Dr med. Dipl.-Psych. Lucas Adam is a graduate psychologist and an assistant physician at the Charité’s department of neurology and was a research fellow at the Max Planck Institute for Human Development, Berlin, and at Yale Medical School, USA. As a research assistant in the Franke working group, he is involved in conducting interventional and observational studies in the field of PAISs at the Charité’s department of neurology. Beyond that, his research activities focus on the relationship between stress and the immune system and its effects on mental and physical health.&nbsp;
PD Dr med. Christiana Franke is a senior consultant at the department of neurology of the Charité hospital in Berlin and leads the neurological consultation hours on post COVID-19 and PAISs at the Campus Benjamin Franklin. Her main research areas are cognitive disorders and neurodegeneration. Dr Franke leads as a principal investigator the “PoCoVIT” trial funded by the Federal Ministry of Research, Technology and Space, which examines the effect of methylprednisolone in patients with cognitive deficits in the context of post COVID-19 syndrome, and is a project member of the “PAIS-Care” research project, which is funded by the Federal Ministry of Health. Her previous work contributes to broadening our understanding of the pathophysiological mechanisms of the post COVID-19 syndrome.&nbsp;
 &nbsp;

Guest article: Lucas C. Adam & Christiana Franke

Researchers from the RECOVER Initiative have investigated the connection between an infection with the SARS-CoV-2 coronavirus and the emergence of autoimmune diseases. In the case of autoimmune diseases, the immune system turns on the body’s own cells or tissue. The researchers evaluated health data from various databases for over two million people who had had a confirmed coronavirus infection. They investigated whether autoimmune diseases emerged for the first time within a period of two years after the infection. They considered, in particular, the severity of the COVID-19 illness.&nbsp; &nbsp; The results show that after infection with the coronavirus, autoimmune diseases occurred more frequently. This was especially true for people who had been severely ill with COVID-19.&nbsp;
The autoimmune diseases observed included, for instance, autoimmune thyroid diseases, particularly Hashimoto's thyroiditis. With this disease, the body’s immune system turns on its own thyroid tissue. In the long term, this can lead to reduced functioning of the thyroid gland with symptoms such as fatigue, weight gain and constipation.&nbsp;&nbsp;
Moreover, people who had been severely ill with COVID-19 later experienced psoriasis and associated joint pains more frequently. Psoriasis is an inflammatory skin disease. The immune system causes excessive cell formation, causing scaly and red skin patches. Some of those affected also experience painful arthritis (psoriasis arthritis).&nbsp;
Following severe COVID-19 illness, chronic inflammatory bowel diseases also arose more frequently. Chronic inflammatory bowel diseases such as Morbus Crohn and Colitis ulcerosa lead to recurrent bowel infections that can cause stomach ache, diarrhoea and weight loss.&nbsp; &nbsp; Among the children examined, it became apparent that especially after severe COVID-19 illnesses type 1 diabetes was newly diagnosed more frequently. This type of diabetes develops when the body's immune system turns on the cells in the pancreas, which normally produce the messenger substance insulin. As a result, the body can no longer sufficiently regulate the sugar level in the blood.&nbsp; &nbsp; The study results indicate that people who had had a severe COVID-19 illness were at increased risk of developing autoimmune diseases compared to people with a mild course. When providing care to patients who had a severe case of COVID-19 with the associated symptoms, doctors should therefore also consider potential autoimmune diseases, above all following severe courses of disease.

Increased risk of autoimmune diseases, particularly following severe COVID-19 illness

PLOS One is an online journal of the Public Library of Science (PLOS) that publishes research from numerous scientific disciplines. All articles are freely accessible. The aim of PLOS ONE is to make science fast, transparent and accessible to the general public.&nbsp;

PLOS One

The third international ME/CFS conference, organised by the Charité Fatigue Centre and the ME/CFS Research Foundation, was held in Berlin on 12 and 13 May 2025. Around 200 doctors, researchers and other experts from the fields of medicine and biology came together at this conference. The objective was to present and discuss new scientific findings on ME/CFS. Over 4,000 people followed the live stream of the event.&nbsp;
Viral infections are a known cause of myalgic encephalitis or chronic fatigue syndrome (ME/CFS). Following an infection with the SARS-CoV-2 coronavirus, some of those affected develop ME/CFS.  This disease is typically accompanied by severe exhaustion and other symptoms that can significantly restrict everyday life and in some cases lead to the need for long-term care. &nbsp; &nbsp; The conference included, for instance, presentations on new studies concerning possible causes of the disease. In this context, study findings on changes in the "power houses" of the cells (mitochondria), on malfunctions of the immune system and on autoimmunity were discussed. In the case of autoimmunity, the immune system mistakenly produces antibodies against healthy cells. Normally, antibodies recognise foreign substances such as pathogens and neutralise these.&nbsp;&nbsp;
In addition, various experimental treatment approaches were presented. Two of these treatment approaches, which specifically intervene in the body's immune system, are referred to as immune adsorption and B-cell depletion. Further studies are needed to demonstrate the potential benefit of these methods.&nbsp; &nbsp; The international conference was followed up by the ME/CFS Research Symposium. This part was aimed specifically at informing those affected and the general public about the current research situation in Germany.&nbsp; &nbsp; The events provided an important setting for national and international scientific exchange between medical professionals, researchers, other experts, those affected and the interested public.&nbsp; All presentations from the <a href="https://events.mecfs-research.org/de/events/conference_2025/videos" target="_blank" rel="noopener noreferrer">conference</a> and <a href="https://events.mecfs-research.org/de/events/symposium_2025/videos" target="_blank" rel="noopener noreferrer">symposium</a> are available in full on the ME/CFS Research Foundation website.&nbsp;

Third international ME/CFS conference in Berlin

Long COVID in children and adolescents can cause a large variety of different symptoms and clinical presentations. Last year, researchers from the RECOVER Initiative had already described various clusters of symptoms that can occur in children and adolescents with Long COVID. Now the team evaluated the electronic health records of a total of 17,525 children and adolescents with Long COVID using a special algorithm and found six different clinical presentations (phenotypes) of Long COVID in childhood and adolescence. The most common phenotype (almost 54 percent) was associated with cardiovascular and respiratory symptoms. More specifically, the phenotype is characterised by symptoms such as cardiac arrhythmias, chest pains, a cough or breathing difficulties. Another phenotype (around 14 percent) primarily manifested as muscle, joint and skeletal pain . Some of the children and adolescents examined developed neurocognitive or mental symptoms (almost 11 percent). These include anxiety disorders, for instance. Less common phenotypes were associated with gastrointestinal symptoms (around 9 percent), headaches (around 7 percent) and persistent fatigue (5 percent).
According to the researchers, knowing the different phenotypes of Long COVID in children and adolescents can inform further research into Long COVID in this age group and contribute to the development of new treatments.

Different clusters of Long COVID symptoms in children and adolescents

PLOS Digital Health is an interdisciplinary open access journal. Among other things, the journal publishes recent findings in the areas of medicine and healthcare that were obtained using data analyses and digital tools.

PLOS Digital Health

Since 2020, several specialised follow-up outpatient clinics for patients with Long COVID have been set up across Germany. A recent study published in the medical journal BMC Health Services Research identified and surveyed 112 of those specialised outpatient clinics. The researchers collected publicly available information about the outpatient clinics and looked at the responses from 45 outpatient clinic lead doctors who participated in the survey.&nbsp;
The researchers found that treatment in the specialised outpatient clinics did not follow a standardised protocol, but addressed the symptoms of the patients in a personalised manner. Those largely fell into two domains: Respiratory symptoms and neurocognitive symptoms, such as headaches and memory and concentration deficits. Respiratory symptoms were much more likely to affect females than males. The clinicians surveyed reported that more than half of the patients were experiencing strong symptom-related distress. At the same time, they were convinced that their work in the outpatient counselling services provide significant benefits for many of those affected.&nbsp;
In response to the sustained demand for Long COVID treatment, new specialised outpatient clinics are being set up. Currently, outpatient care for Long COVID patients does not follow standardised treatment protocols but is personalized and symptom-orientated. This leads to clear treatment variability between the individual clinics. Therefore, the researchers recommend further standardisation of diagnosis and treatment protocols. This could improve patient care and ease the professional exchange among clinicians.&nbsp; If you are affected or just interested, you can find a list of the clinics and outpatient clinics specialised in diagnosing and caring for Long COVID patients in our service area. The list also includes outpatient clinics from this study.&nbsp;

Long COVID follow-up outpatient clinics in Germany: Insights and perspectives

BMC Medicine is a medical journal that is part of the scientific publishing group Springer Nature. Exclusively published online, the journal is open access to make articles and medical findings available to a wide public.&nbsp;

BMC Medicine

Experts, patient advocacy groups and relevant public health stakeholders once more came together with Federal Minister of Health Prof. Dr Karl Lauterbach on 31 March 2025 in Berlin to exchange their views on the latest developments in the field of Long COVID. A particular focus was on the participation process initiated by the Federal Ministry of Health entitled “Long COVID among children and adolescents”, the Federal Ministry of Health’s funding priority on “pilot projects for children and adolescents with Long COVID”, the Federal Ministry of Health’s funding priorities on patient-oriented research, as well as the work of the Expert Group on Long COVID Off-Label Use.
The Federal Ministry of Health previously hosted Long COVID round tables in <a href="https://www.bmg-longcovid.de/en/discourse/long-covid-round-table/long-covid-round-table-september-2023" target="_blank" rel="noopener noreferrer">September 2023</a>,&nbsp;<a href="https://www.bmg-longcovid.de/en/discourse/long-covid-round-table/2nd-long-covid-round-table-december-2023" target="_blank" rel="noopener noreferrer">December 2023</a>,&nbsp;<a href="https://www.bmg-longcovid.de/en/discourse/long-covid-round-table/long-covid-round-table-april-2024" target="_blank" rel="noopener noreferrer">April 2024</a>&nbsp;and&nbsp;<a href="https://www.bmg-longcovid.de/en/discourse/long-covid-round-table/round-table-on-long-covid-september-2024" target="_blank" rel="noopener noreferrer">September 2024</a>&nbsp;with the aim of improving networking among all parties involved.

Fifth “Long COVID Round Table” at the Federal Ministry of Health

The photo shows Federal Minister of Health Prof Dr Karl Lauterbach at the fifth Long COVID round table.

Researchers at the Barcelona Institute for Global Health, Spain, reported that about half of Long COVID survivors were still experiencing symptoms two years after having been infected with the SARS-CoV-2 coronavirus. The research team followed up a total of 2,764 infected individuals several times over four years. To map their Long COVID symptoms, participants were invited to complete validated questionnaires. Moreover, electronic health records were evaluated. The study set out to gain new insights about potential risk factors, symptoms and courses of this condition.&nbsp;
In addition, the researchers identified several factors that were associated with a higher risk of developing Long COVID. As per the study, this risk was higher for females, individuals aged under 50 years, of low socioeconomic status and with severe COVID-19 infection. Obesity and chronic respiratory illnesses such as asthma or COPD were also associated with a higher risk. By contrast, the risk of developing Long COVID was lower in persons with vaccination against COVID-19, higher levels of regular physical activity prior to the infection and who slept at least 6 to 8 hours a night. Infection with the Omicron variant was also linked to a lower risk of Long COVID.&nbsp;
The results of this study highlight the fact that Long COVID continues to have major implications for society as a whole and the need for further research in this area.

Many COVID survivors still experience symptoms two years after SARS-CoV-2 infection

The Barcelona Institute for Global Health (ISGlobal) is a consolidated hub of excellence in research that is the result of an alliance between the “la Caixa” Foundation and several academic institutions as well as government bodies. Through its research, ISGlobal seeks to improve global health and promote health equity.

Barcelona Institute for Global Health

This guest article by Ricarda Piepenhagen, founder of the patient organisation NichtGenesen (NotRecovered), addresses the healthcare requirements of patients affected by Long COVID, ME/CFS and Post-Vac syndrome. It describes the challenges that the patients themselves have to face, as well as the challenges posed to science, medicine and society as a whole, from the point of view of those affected by post-infectious diseases.

Research, treatment and recognition for people with ME/CFS and post-infectious syndromes

Ricarda Piepenhagen is the founder of the patient organisation NichtGenesen. The patient organisation represents the interests of those affected by Long/post-COVID, ME/CFS and Post-Vac syndrome, as well as those affected by post-infectious syndrome (PAIS) in general. The guest article highlights historical parallels, explains the situation of patients affected and highlights the urgent need for action from the patient's perspective.

Guest article Ricarda Piepenhagen

The picture shows a portrait photo of Ricarda Piepenhagen, founder of the patient organisation NichtGenesen.

On 7 March 2025, the courses of action to improve healthcare provision developed as part of the Long COVID among children and adolescents participation process were handed over to Minister of Health Prof. Karl Lauterbach in Berlin by ten patient ambassadors. In addition to the ambassadors, who include patients, relatives, doctors and educators, other people who took part in the participation process followed the discussion online.
The courses of action constitute the result of the participation process initiated by the Federal Ministry of Health (BMG) on the topic of Long COVID among children and adolescents, which ran from October 2024 to March 2025. The aim of the format was to gain more clarity around the care and support needs in practice and to identify potential measures for improvement.

Long COVID participation process: Affected persons hand over courses of action to improve healthcare provision

Das Bild zeigt Bundesgesundheitsminister Prof. Dr. Karl Lauterbach und zehn Betroffenenbotschafterinnen und -botschafter des Partizipationsprojekts „Long COVID bei Kindern und Jugendlichen“ gemeinsam bei der Übergabe der erarbeiteten Handlungsansätze zur Verbesserung der Versorgung.

A study by the Hochschule für Prävention und Gesundheitsmanagement in Saarbrücken examined the effect of individualised, symptom-oriented movement therapy on patients with Long COVID-related fatigue. As part of the study, staff at 19 gyms based in the Saarland first instructed Long COVID patients on how to monitor their symptoms and adapt their training to their individual needs. The patients then independently matched their training to the severity of their symptoms. Data from a total of 118 Long COVID patients were evaluated. After a period of 10 weeks, the participants in the training programme experienced reduced fatigue and an improved health-related quality of life compared to the control group. The participants in the training programme also demonstrated greater improvements in hand strength measurements compared with the control group.
The special aspect of this study is that it was designed from the outset with interventions that can be easily implemented in popular sports. The approach appears promising, can be implemented without too much effort and, by using pacing strategies, takes into consideration any post-exertion malaise (PEM) as reported by some Long COVID patients. In the case of post-exertion malaise, physical activity can make symptoms worse. This is why it is important that treatment aligns any activities with the patient’s own tolerance levels and avoids any excessive exertion.

Individualised, symptom-oriented movement therapy can reduce fatigue in Long COVID patients

Deutsche Hochschule für Prävention und Gesundheitsmanagement (DHfPG) in Saarbrücken is an accredited private University of Applied Sciences. Its focus areas include sports and movement therapy, computer science in sport/health, fitness economics, sports economics, health management, fitness training and nutrition education as well as prevention and health management.&nbsp;

Deutsche Hochschule für Prävention und Gesundheitsmanagement

Scientific Reports is an academic journal published online by Nature Research publishers. The respected journal publishes original works from the fields of the natural sciences, psychology, medicine and engineering.

Scientific Reports

On 10.02.2025, the German Federal Ministry of Health launched a coordination network for Long COVID research by hosting the first meeting of the 30 projects selected for the funding priority ‘Researching and strengthening needs-based healthcare for the long-term consequences of COVID-19 (Long COVID)’.&nbsp;
Projects with a total volume of 73 million euros were approved for the ongoing 2024 to 2028 funding priority for care-related research. 30 projects were awarded funding as part of a competitive selection process and have now started work. The funding priority is divided into several modules, which will be dedicated to integrated or coordinated healthcare, innovations in healthcare (e.g. wearables) and research into the healthcare situation and disease progression.
The event also featured a soon-to-be-launched network of model projects for the healthcare of children and adolescents with Long COVID.
The aim of the networks is to develop and share research findings on the treatment of Long COVID, including ME/CFS, so that they can be incorporated into healthcare in a timely manner. Similarly, data from healthcare should also be shared with the researchers.&nbsp;
A coordination centre based at the ‘Technology and Methods Platform for Networked Medical Research e. V.’ (TMF) is tasked with coordinating the funded projects.&nbsp;

Launch of the German Federal Ministry of Health's Long COVID research network

Ein Konferenzraum mit einer großen rechteckigen Tischanordnung, an der zahlreiche Personen sitzen. Ein Redner steht vorne neben einer Leinwand und hält eine Präsentation mit einer Folie, die Informationen zum Forschungsnetzwerk Long COVID zeigt.

After being infected with the SARS-CoV-2 coronavirus, some of the patients develop myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).&nbsp; This disease is typically characterised by severe fatigue, which impairs day-to-day functioning severely and in some cases leaves the patients in need of care. Viral infections are a known causative agent of ME/CFS.
The RECOVER Initiative has now analysed data of total 11,785 people who were previously infected with SARS-CoV-2, and has published this data in the Journal of General Internal Medicine (JGIM). The analysis has revealed that: Around 5 out of 100 people were still suffering from severe physical and mental fatigue 6 months after the infection and met the diagnostic criteria for ME/CFS. Around 40 out of 100 people had symptoms similar to ME/CFS or fulfilled at least one criterion for ME/CFS. In contrast, approximately 56 out of 100 people reported no symptoms that were typical of ME/CFS. It should be noted that the data is based on self-assessments by those affected and may therefore reflect subjective variations. Post-exertional malaise (PEM) was reported as the most common ME/CFS symptom. In PEM, symptoms worsen after physical or mental activity. Nearly a quarter of the total people previously infected by SARS-CoV-2 were reported to be affected. &nbsp;

New study results on the incidence of ME/CFS after SARS-CoV-2 infection

The Journal of Infection is the official journal of the British Infection Association. This Journal publishes original works on various topics surrounding infection. Its target audience includes scientists and physicians.

Journal of Infection

The RECOVER Initiative has revised the research definition for Long COVID. This definition differs from a classic case definition, as it was developed for research and not for diagnosis by doctors. A standardised definition of Long COVID in research is important, among other things, so such studies can be conducted in a more uniform manner and be better compared with each other.&nbsp;
The revised research definition includes data from a total of 13,647 adults with and without previous infection with the SARS-CoV-2 coronavirus. The so-called ‘Long COVID Research Index’ of 2024 translates the existing symptoms of the individuals into a score. On the basis of this value, a probable Long COVID disease and a possible Long COVID disease can then be differentiated.&nbsp;
Based on the data, the researchers were able to differentiate between 5 different forms (‘subtypes’) of Long COVID, each with its own characteristic symptoms. In subtype 1, the focus is on changes in odour or taste. Subtype 2 is characterised by a chronic cough. Subtype 3 describes reduced mental performance (‘brain fog’) as a characteristic symptom. People with subtype 4 suffer from a clearly noticeable, faster or irregular heartbeat. Subtype 5 includes people with pain after physical exertion, dizziness and gastrointestinal symptoms. Subtypes 2 to 5 also include fatigue and discomfort after exercise. Subtype 5 shows overlaps with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). The application of the revised research definition in clinical studies should help to better take into account the complexity of the pattern of illness and the differences between different patient groups.

New research definition for Long COVID

The Journal of the American Medical Association (JAMA) is the most widely read medical journal in the world. It is published 48 times a year by the American Medical Association.

JAMA

In 2024, the Federal Ministry of Health (BMG) established a funding priority on “investigation and strengthening of needs-based care addressing the long-term health effects of COVID-19 (Long COVID)”. In this context, the BMG has a total of up to 81 million euros at its disposal (from 2024 to 2028) to fund patient-oriented research into Long COVID. In a competitive application process, 30 projects launching late 2024 or early 2025 were selected for funding.
A list of the projects funded can be found on the <a href="https://www.bundesgesundheitsministerium.de/ministerium/ressortforschung/handlungsfelder/forschungsschwerpunkte/long-/post-covid.html" target="_blank" rel="noopener noreferrer">BMG’s website</a>.
This patient-oriented funding on Long COVID will focus particularly on pilot projects that develop and test innovative types of treatment for people with Long COVID. A network will be created to encourage knowledge exchange, initiate care research and thus improve the care of those affected. The aim is for research findings that can inform the treatment of Long COVID, including ME/CFS associated with Long COVID, to be translated as soon as possible into patient care and, conversely, for data from healthcare to be made available to researchers.

Launch of 30 projects on patient-oriented care

On 25 November 2024, the Third Long COVID Congress was held in Berlin. In his speech, Federal Minister of Health Prof. Dr Karl Lauterbach made a powerful statement: “People’s quality of life is severely compromised (...) which is why we need to intensify our research efforts. Our care structure – which is what this congress is about – is anything but perfect”.
The congress was hosted by the Long COVID Medical Association (Ärzte- und Ärztinnenverband Long COVID) in cooperation with the Federal Ministry of Health. The event offered a platform for exchange between professionals, patients with Long COVID, their relatives and representatives of self-help groups and initiatives. At the same time, it served to provide further training to professionals. About 260 guests participated in the event. In eight different rooms, participants discussed research projects and findings, diagnostic procedures and treatment approaches for Long COVID, focussing on topics such as the psychosocial and ethical aspects of the syndrome, treatment options or paediatric care.&nbsp;In addition, a workshop was conducted on how to improve care for children and adolescents with Long COVID.

Third Long COVID Congress in Berlin

The primary task of the Long COVID Medical Association is to research the long-term effects of COVID-19, make that knowledge available in a centralised manner and advance the establishment of care facilities in order to improve the treatment of patients with Long COVID.

Long COVID Medical Association (Ärzte- und Ärztinnenverband Long COVID)

Federal Minister of Health Prof Dr Karl Lauterbach speaks at the lectern at the opening of the 3rd Long COVID Congress in Berlin. A screen with the title of his lecture can be seen in the background: ‘Significance of Long COVID and other post-infectious diseases from a health policy perspective’. Two other people are standing next to him at a podium table while the audience listens attentively.

Federal Minister of Health Prof Dr Karl Lauterbach opens the 3rd Long COVID Congress in Berlin with an impulse on the health policy significance of Long COVID and other post-infectious diseases.

The ‘POSCOR’ research project at the University Hospital of Würzburg, a digital support project for people with Long COVID, has been extended until 31.12.2025 as part of the ‘Post COVID Syndrome Funding Initiative’ of the Bavarian State Ministry of Health, Care and Prevention. The app helps those suffering from the condition to apply for rehab more quickly and easily in order to cut down the waiting time for a suitable rehab place. The app also provides those suffering with information on how they can manage their symptoms better and actively contribute to improving their quality of life. The programme is open to people between 18 and 64 years of age with a Long COVID diagnosis who have statutory pension insurance with DRV Nordbayern. As part of the ‘Bavarian Post COVID Network’, the project was presented at a network meeting at the Bavarian State Ministry of Health, Care and Prevention in Munich on 29.11.2024.&nbsp;

Get to rehab faster: POSCOR’ research project extended

The University Hospital of Würzburg is the hospital of the Medical Faculty of the Julius-Maximilians-University of Würzburg. As the only max-care hospital in Lower Franconia, it comprises 19 clinics with university outpatient clinics, three independent university outpatient clinics and three clinical institutes. With a total of approx. 1,400 beds and over 7,000 employees, it treats around 75,000 inpatients and day-case patients and over 290,000 outpatients every year.&nbsp;&nbsp;

University Hospital of Würzburg

Das Foto zeigt die Teilnehmenden des bayerischen Netzwerks Post COVID im Bayerischen Staatsministerium für Gesundheit, Pflege und Prävention in München.

The updated patient guideline on “<a href="https://register.awmf.org/de/leitlinien/detail/020-027" target="_blank" rel="noopener noreferrer">Long/Post COVID Syndrome</a>” has been available online since the end of September 2024. The revised guideline aims to serve as guidance and provide those affected as well as their relatives and loved ones with an overview of the syndrome. The guideline not only contains comprehensive information about the individual symptoms and their treatment, but also provides information about support services. In addition, it gives recommendations on what those affected can do by themselves to alleviate their symptoms.
A total of 29 medical societies as well as several patient organisations contributed to the guideline. It was compiled under the leadership of the German Respiratory Society (Deutsche Gesellschaft für Pneumologie und Beatmungsmedizin e.V.). The guideline is the patient edition of the S1 guideline “Long/Post COVID”, which is addressed to physicians and other medical professionals.

Revised “Long/Post COVID Syndrome” patient guideline published

The German Respiratory Society e.V. is the largest and oldest medical society for lung diseases within the German-speaking countries. It sees itself as a forum for all physicians, scientists and academics working in the field of pulmonary medicine (pneumology).

German Respiratory Society (Deutsche Gesellschaft für Pneumologie und Beatmungsmedizin e.V.)

The Association of the Scientific Medical Societies e.V. (AWMF) is an umbrella organisation made up of 184 medical societies. The AWMF’s responsibilities include coordinating the development of medical guidelines for diagnosis and treatment in the different fields of medicine. Guidelines contain specific recommendations for action targeted at physicians, other medical professionals and patients. The guidelines always consider state-of-the-art scientific evidence.

Association of the Scientific Medical Societies (Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften e.V. – AWMF)

The Federal Ministry of Health is working intensively to address Long COVID in children and adolescents. In this context, a new participation format was initiated to collect insights into the lives of children and adolescents with Long COVID and their relatives. The aim: to identify healthcare, information and support needs and discuss possible solutions that could help those affected. People with Long COVID, their relatives, professionals who encounter those affected in their working life as well as other people who are interested in the topic are very welcome to participate in the survey and the workshops.

Participation format launched on Long COVID in children and adolescents

The photo shows a flipchart with several notes. Several people can be seen in the background, all spread around a table and working together. 

To help improve the care of patients with Long COVID, the expert group on Long COVID Off-Label Use, which is located at the Federal Institute of Drugs and Medical Devices (BfArM), developed a <a href="https://www.bfarm.de/DE/Arzneimittel/Zulassung/Zulassungsrelevante-Themen/Expertengruppe-Long-COVID-Off-Label-Use/_node.html#therapiekompass" target="_blank" rel="noopener noreferrer">Treatment Compass</a> that provides an overview of appropriate substances and substance groups. In particular, the Compass provides treatment recommendations regarding the use of medicinal products in their approved indications to treat symptoms associated with Long COVID. That means, these prescription-only medicinal products can be prescribed and used ‘on-label’ in the indications for which they are approved.&nbsp;However, this experience-based Treatment Compass is not a substitute for evidence-based off-label use recommendations regarding the specific treatment of Long COVID. The evaluation of scientific evidence on the off-label use of medicinal products remains one of the central tasks of the Expert Group on Long COVID Off-Label Use.

Publication of Treatment Compass

The Federal Institute for Drugs and Medical Devices (BfArM) is an independent higher federal authority within the portfolio of the Federal Ministry of Health.&nbsp;The&nbsp;BfArM’s core tasks include the licensing and registration of medicinal products, recording and assessment of risks related to medical devices, monitoring of the legal trade in narcotics and precursors as well as the publication of medical coding systems for the healthcare sector.

Federal Institute for Drugs and Medical Devices (Bundesinstitut für Arzneimittel und Medizinprodukte)

Experts, patient advocacy groups and relevant public health stakeholders came together with Federal Minister of Health Prof. Dr Karl Lauterbach on 17 September 2024 in Berlin to exchange their views on the latest developments in the field of Long COVID. This time around, the discussions mainly focussed on the latest research findings, the current situation in care, new healthcare research projects of the Innovation Fund as well as the work of the Expert Group on Long COVID Off-Label Use. The Federal Ministry of Health previously hosted Long COVID round tables in&nbsp;<a href="https://www.bmg-longcovid.de/en/discourse/long-covid-round-table/long-covid-round-table-september-2023" target="_blank" rel="noopener noreferrer">September 2023</a>,&nbsp;<a href="https://www.bmg-longcovid.de/en/discourse/long-covid-round-table/2nd-long-covid-round-table-december-2023" target="_blank" rel="noopener noreferrer">December 2023</a>&nbsp;and&nbsp;<a href="https://www.bmg-longcovid.de/en/discourse/long-covid-round-table/long-covid-round-table-april-2024" target="_blank" rel="noopener noreferrer">April 2024</a> with the aim of improving networking among all parties involved.

Fourth “Long COVID Round Table” at the Federal Ministry of Health

Das Foto zeigt Bundesgesundheitsminister Prof. Dr. Karl Lauterbach im Rahmen des vierten Runden Tisches zu Long COVID

A research team led by Halle University Medicine evaluated data from the German National Cohort (NAKO Gesundheitsstudie) regarding possible risk factors for Post COVID.&nbsp;
Between September and December 2022, a survey concerning prior coronavirus infections, COVID-19 vaccinations and Post COVID symptoms was carried out as part of the German National Cohort.&nbsp; Data from a total of 109,707 participants were evaluated. Sixty percent of those surveyed self-reported that they had been infected at least once with the SARS-CoV-2 coronavirus. Over 80 percent indicated they had received three vaccine doses or more against COVID-19.
The survey was carried out using an online questionnaire that also included a list of 21 symptoms. Thirty-five percent of those surveyed reported symptoms between 4 to 12 months after a coronavirus infection. Of these, 23 percent indicated a high symptom burden with nine or more symptoms.&nbsp;
The data analysis showed that the risk of Post COVID decreased with newer virus variants: Post COVID symptoms were reported less frequently after an initial infection with the Omicron variant than after an initial infection with earlier virus variants. Additionally, people whose first infection had not resulted in post-COVID symptoms demonstrated a lower likelihood of developing post-COVID symptoms when infected a second time than those infected for the first time.&nbsp;
With Omicron variant infections, having received a fourth vaccine dose against COVID-19 also reduced the risk of developing Post COVID.&nbsp;

Research team evaluates risk factors for Post COVID

As a maximum care provider, the University Medicine Halle combines the Medical Faculty of the Martin Luther University Halle-Wittenberg with the University Hospital Halle (Saale). Its primary focus is on research, education and healthcare.

University Medicine Halle

The German National Cohort is the largest long-term study researching common diseases in Germany. Since 2014, as part of this study over 205,000 randomly selected people have undergone repeated comprehensive medical examinations and are asked about their lifestyle habits. The study data contributes towards prevention and personal healthcare.

German National Cohort (NAKO Gesundheitsstudie)

As part of the RECOVER Initiative, a US study with more than 10,000 participants searched for a suitable value that could be used to reliably detect Long COVID in the blood (‘biomarker’). However, none of the 25 routine laboratory values tested proved to be a suitable biomarker.&nbsp;
8,746 of the participants had already been infected with the SARS-CoV-2 coronavirus. 21.5 per cent of them reported Long COVID symptoms. Among other things, it was investigated whether the laboratory values of the participants with Long COVID symptoms differed from those without long-term symptoms following infection. However, there were no significant differences found between the two groups.
There was evidence of persistent inflammation in the blood of participants with long-term COVID symptoms. A generally higher number of platelets (thrombocytes) and a higher level of a certain inflammatory marker (hsCRP) were measured. However, these values are not suitable as biomarkers for Long COVID.
Irrespective of Long COVID symptoms, participants with a previous infection with the coronavirus had a higher albumin-creatinine ratio in their urine. This value is associated with kidney function and cardiovascular disease. In addition, participants with previous infection had slightly fewer platelets (thrombocytes) in their blood. In addition, people in this group had a higher long-term blood glucose level (HbA1C), which is also elevated in diabetes. There is already evidence from other studies that infection with the coronavirus can contribute to a higher risk of diabetes. However, the differences compared to participants without prior infection were overall minor. None of the analysed values could be used to detect Long COVID.

Long COVID still undetectable by laboratory value

Children and adolescents can also develop Long COVID. However, according to the results of the US RECOVER Initiative, some of the symptoms appear to be different from those of adults. Last year, the research project had already reported on various symptom clusters in adults. The symptoms of those suffering can differ from one another. Among people with Long COVID, different groups with similar symptom patterns can be distinguished, i.e. different symptom clusters. These clusters can facilitate the diagnosis of Long COVID. In August, the research group published results on children and adolescents in the JAMA journal. In total, the legal guardians of 898 children and 4,469 adolescents were surveyed. Of these, 751 children and 3,109 adolescents had been infected with the SARS-CoV-2 coronavirus more than a year ago on average.&nbsp;
The research team found 4 different symptom clusters in school-age children. One cluster focussed on headaches, pain in muscles, joints and other parts of the body as well as daytime tiredness, sleepiness or lack of energy. Children in another symptom cluster mainly suffered from sleep disorders and memory or concentration problems. Another group was characterised by stomach pain and nausea or vomiting. A fourth cluster was made up of children with a heavy symptom burden with many different symptoms.
The research team found 3 different symptom clusters for adolescents. In one cluster, daytime tiredness, sleepiness or lack of energy as well as pain in muscles, joints and other parts of the body were frequently reported. In another cluster, the focus was on a change in or loss of the sense of smell or taste. A third group also reported a heavy symptom burden with many different symptoms.
According to the researchers, the results of the study can contribute to the diagnosis of Long COVID in children and adolescents.

According to study, Long COVID symptoms in children and adolescents are sometimes different to those in adults

Long COVID continues to be a major concern for many people. According to a statement from the Lower Saxony Ministry of Health, current estimates suggest that around 5 to 10 per cent of all people develop Long COVID after being infected with the coronavirus. Information on the exact number of those suffering is still difficult to obtain.
The AOK Lower Saxony has analysed its insurance data in relation to Long COVID: In the period from March 2020 to December 2023, 12,300 of the almost 800,000 employees with continuous AOK insurance were on sick leave at least once due to the long-term effects of COVID-19. In 2023 however, there were significantly fewer sick notes due to Post-COVID, long-term COVID or chronic fatigue syndrome than in previous years.&nbsp;
In Lower Saxony, a counselling hotline has been open since August 2023 run by the state government and AOK Niedersachsen. The state also has two outpatient clinics for Long COVID and Post-COVID patients at Hannover Medical School and Göttingen University Medical Centre. The aim of these outpatient clinics is to provide interdisciplinary treatment as early as possible, particularly for patients with severe chronic fatigue or prolonged absence from work, training and school.&nbsp;&nbsp;

Many people continue to be under strain from Long COVID

With more than 3 million insured persons, AOK Niedersachsen is the largest health insurance company in Lower Saxony. It therefore makes a major contribution to statutory healthcare in Lower Saxony.&nbsp;&nbsp;

AOK Niedersachsen

The Ministry of Social Affairs, Labour, Health and Equality in Lower Saxony is a supreme state authority. It is one of ten ministries in the state government of Lower Saxony.

Lower Saxony Ministry for Social Affairs, Labour, Health and Equality:

A new telephone counselling service has been in place in North Rhine-Westphalia since 1 July 2024. The service provided by the state and Deutsche Rentenversicherung Westfalen is aimed at people with Long and Post-COVID, chronic fatigue syndrome (ME/CFS) or prolonged symptoms following a COVID-19 vaccination. The hotline 0800/2381000 is active Monday to Friday from 10 AM to 2 PM.
Those suffering often face considerable difficulties in everyday life. At the same time, they lack the strength to find suitable offers of help. The hotline gives them and their relatives the opportunity to obtain low-threshold independent and free advice on various aspects of social law. This includes health insurance benefits and topics such as rehabilitation, pensions, care and reintegration. Furthermore, employers can obtain information about support services. Medical counselling is not offered.

New counselling service for those suffering in NRW

The Ministry of Labour, Health and Social Affairs (MAGS) of the state of North Rhine-Westphalia is a supreme state authority. It is one of eleven ministries in the administration of the state of North Rhine-Westphalia.&nbsp;

Ministry of Labour, Health and Social Affairs (MAGS) of the state of North Rhine-Westphalia

The German Pension Insurance of Westphalia is the statutory pension insurance provider for over 4.2 million insured persons.&nbsp;

German Pension Insurance of Westphalia

The German Bundestag has released 52 million euros for care of children and adolescents who have Long COVID. The resources should establish and expand the treatment programmes in the federal territory as well as promote research projects for children and adolescents with Long COVID in the period from 2024 to 2028. The Federal Ministry of Health had earlier presented a concept for a funding announcement, prepared together with subject matter experts as well as stakeholders, to the budget committee.&nbsp; This funding announcement, specifically for children and adolescents with Long COVID is currently being developed and shall soon be published.

52 million euros for care of children and adolescents with Long COVID

Researchers at Charité Berlin have examined a link between the hand grip strength and severity of symptoms in persons suffering from post COVID and ME/CFS. The measurement of individual hand grip strength is used for the medical diagnosis of a physical decline in performance.&nbsp;
The study by Charité Berlin included 144 female patients with post COVID, 78 of whom are affected by ME/CFS. The hand grip strength was impaired in all study participants, but only in participants with ME/CFS was the degree of impairment associated with severity of symptoms. This suggests a common mechanism for muscle weakness and other symptoms experienced by persons suffering from ME/CFS, but not found in other forms of post COVID. According to the study, impaired hand grip strength is an objective marker of physical function in post COVID patients.&nbsp;

A study conducted by Charité examines hand grip strength as an objective measure of muscle fatigue in persons with post COVID

The Charité - Universitätsmedizin Berlin is a world-renowned institution for medical research, education and high-performance medicine and one of the largest hospitals in Europe. It combines, both, university research and teaching in its medical faculty and care of patients in its university hospital. In the process, both, basic research and application-oriented research contiguous to the hospital are further developed through interdisciplinary networking. The Charité is responsible for the university education of the next generation of human and dental doctors and provides further education offers in the field of health sciences.

Charité University Medicine Berlin National Clinical Study Group

On 16 April 2024, the third Long COVID round table was held in Berlin, continuing the dialogue on the improvement of care for those affected by Long COVID. Once again, Federal Minister of Health Prof. Dr Karl Lauterbach invited experts from the fields of medicine, science, industry and politics as well as patient advocacy groups to discuss current developments. This time, the focus was on the Federal Joint Committee’s (G-BA) new Long COVID directive, the promotion of patient-oriented research by the BMG, the planned measures to improve care for children and adolescents with Long COVID as well as the work of the expert group on Long COVID Off-Label Use. Following the first two Long COVID round tables in <a href="https://www.bmg-longcovid.de/en/discourse/long-covid-round-table/long-covid-round-table-september-2023" target="_blank" rel="noopener noreferrer">September 2023</a> and <a href="https://www.bmg-longcovid.de/en/discourse/long-covid-round-table/2nd-long-covid-round-table-december-2023" target="_blank" rel="noopener noreferrer">December 2023</a>, the third round table once again provided a space for sharing interdisciplinary ideas and solutions.

The BMG hosted the third Long COVID round table

The photo shows Federal Minister of Health Prof Dr Karl Lauterbach at the third round table

The Federal Ministry of Health is establishing a funding priority on “investigation and strengthening of needs-based care addressing the long-term health effects of COVID-19 (Long COVID)”. The funding will be used for the development of novel and transferable care approaches and their integration into existing services, the generation of knowledge and networking of skills in the quest to sustainably enhance the care of persons living with Long COVID.&nbsp;
The funding will go towards projects structured into four modules. The projects are scheduled to launch in autumn 2024 and will be eligible for funding until 2028. Project outlines can be submitted no later than 29 April 2024 for modules 2 and 3 and no later than 21 May 2024 for modules 1 and 4.
<h4>Module 1: Pilot projects for integrated and/or coordinated care</h4>
The projects in this module can set up and evaluate concepts to enhance the integrated or coordinated care of Long COVID patients.
<h4>Module 2: Innovations in care</h4>
To enable improved clinical characterisation and treatment, pilot projects and other initiatives that set out to develop novel innovative tools for diagnosis and therapy support as well as better monitoring of the quality of Long COVID care can be eligible for funding.&nbsp;
<h4>Module 3: Investigating the situation in care and epidemiological aspects</h4>
Research in this context will focus on the current situation in care and epidemiological aspects. The areas eligible for funding will be, in particular, healthcare research looking into epidemiological issues, uptake and utilisation rates of care services, perspectives and perceptions of the general population and stakeholders as well as health economic analysis.
<h4>Module 4: Central coordinating unit and overall evaluation</h4>
It is envisaged to complement modules 1 to 3 with a coordinating unit to ensure the targeted, structured and regular integration of all of the projects funded. In addition, the coordinating unit will have further tasks specifically related to the pilot projects of modules 1 and 2. These include, in particular, the timely definition and establishment of joint requirements and standards.&nbsp;
The projects will be selected in a two-step procedure. The Federal Ministry of Health has commissioned the Deutsches Zentrum für Luft- und Raumfahrt (DLR Projektträger) to implement this procedure as a project manager. For further information, please visit the DLR project manager’s website.&nbsp;

Federal Ministry of Health establishes funding priority

Doctors and nurses stacking hands to express cooperation.

Significantly fewer people had to take sick leave last year due to post or long COVID or chronic fatigue syndrome (CFS) than in the years 2021 and 2022. However, the periods of sick leave of those affected are still long. This is the result of a current analysis conducted by the AOK Research Institute.
The evaluation found that between March 2020 and December 2023, more than one in three of all members of the AOK health insurance funds, who were in permanent gainful employment, were written at least one sick leave certificate in connection with an acute COVID-19 infection. 1.8 percent of those insured with AOK took sick leave at least once due to long COVID, post COVID or CFS.
The trend decreases over time. While in March 2022, 416 per 100,000 employees insured with AOK received a sick note for long COVID, post COVID or CFS, the number had decreased to 110 per 100,000 employees by December 2023.
Often, those affected are absent from work for longer time periods. For long COVID, the average duration of incapacity for work was 36.6 days – without considering the duration of the acute infection. The duration per case was 31.6 days for post COVID and 29.9 days for CFS, respectively.
The evaluation also shows that older employees are absent from work due to late sequelae of a COVID-19 infection more frequently than would be expected compared with other diseases. In more than 44 percent of all long COVID cases, those affected are aged between 50 and 59 years. The situation is similar for post COVID and CFS.

Long and post COVID: declining number of sick notes, but long periods of absence from work

Since 1976, the AOK Research Institute (Wissenschaftliches Institut der AOK – WIdO), the research and consultation institute of the AOK health insurance funds, provides expert opinions on all service areas of the statutory health insurance. Research focuses on issues related to outpatient care, medicinal products and therapeutic measures, health services research, hospitals, multisectoral care, workplace health promotion as well as long-term care and nursing care.

The AOK Research Institute (WIdO)

A graph showing a bar chart of sick Long COVID, Post COVID and CFS patients.

Researchers at Trinity College and St. James's Hospital in Ireland are currently investigating the causes of the so-called “brain fog”, which is affecting many people suffering from Long COVID. The symptom refers to impaired mental performance. This manifests itself, among other things, in a reduced ability to concentrate and memory difficulties.
The research team had already taken blood samples from 76 COVID-19 patients in the spring of 2020. Compared to a control group without COVID-19 disease, they observed increased levels of a protein (“S100 beta”), which is an indicator of an impaired blood-brain-barrier. The blood-brain-barrier is the transition between the bloodstream and the central nervous system and normally protects the brain from harmful substances.&nbsp;
The researchers also examined 10 healthy persons, 11 persons with Long COVID without brain fog and 11 persons with Long COVID who suffer from the symptom of brain fog.
Using MRI images and a special contrast media, the research team was able to show that more contrast media passes through the blood-brain-barrier in people with Long COVID. The blood vessels have become more permeable due to the viral infection. The blood-brain-barrier can be disrupted both during an acute COVID-19 illness and in people suffering from Long COVID. Among other things, this allows cells and neurotransmitters of the immune system to reach the brain more easily. The researchers assume that more permeable blood vessels and an overactive immune system are primarily responsible for the “brain fog”.&nbsp;
In future, the permeability of the blood-brain-barrier could be an important indicator of the neurological consequences of COVID-19 disease. More precise connections and possible treatment methods derived from this are still being researched.

Study explores causes of “brain fog”

Trinity College is a renowned university in Dublin, Ireland. Established in 1592, it is one of the oldest universities in the world.&nbsp;

Trinity College

St. James's Hospital is a hospital in Dublin, Ireland. It co-operates with Trinity College as an academic partner.&nbsp;

St. James’s Hospital

Nature is an important medical journal published monthly by the Nature publishing group. It publishes articles on current topics in biomedical research aimed at scientists and the medical profession.&nbsp;&nbsp;&nbsp;

Nature 

This guest article by Katrin Kunert, Vice President of recreational, preventive and rehabilitation sports at the National Paralympic Committee Germany (DBS) e.V. places a focus on the holistic approach of rehabilitation exercise as a promising approach to addressing the diverse physical and psychological impairments of patients with Long COVID.

Rehabilitation exercise – an opportunity for patients with Long COVID

Katrin Kunert is the Vice President of recreational, preventive and rehabilitation sports at the National Paralympic Committee Germany (DBS) e.V. A graduate engineer and former member of the Defence Committee and spokesperson of her party's parliamentary group on the Sports Committee of the German Bundestag (from 2009 until 2017), she has been on the DBS Executive Committee since 2017.&nbsp;

BMG Long COVID Initiative

Long COVID timeline