Useful information for patients and interested parties
Things to know about Long COVID
What is Long COVID and how is it different from Post COVID?
Long COVID can be understood as prolonged COVID. A distinction is made between Long COVID and Post COVID in medicine and science depending on the duration of the symptoms.
The term Long COVID covers long-term health problems, which last beyond the acute illness phase of 4 weeks after the Corona virus SARS-CoV-2 infection. The symptoms can arise already during the COVID-19 illness, reappear later or even newly appear as late as several weeks after the Corona virus infection, even after a mild or symptomless progression.
On the other hand, Post COVID refers to symptoms, which are still present even after 12 weeks or arise newly or again after a Corona virus infection. The symptoms last for at least 2 months and cannot be explained otherwise. Furthermore, the long haulers are generally affected in everyday life, says the preliminary definition of World Health Organization (WHO).
As an umbrella term, Long COVID covers all long-term symptoms, which are present longer than 4 weeks after a Corona virus infection and thus also covers Post COVID.
The currently available scientific studies do not always use the definitions for Long COVID and Post COVID homogenously. Therefore, an allocation to Long COVID and Post COVID cannot always be made selectively.
This website homogenously talks of Long COVID. By that we mean the entire period from 4 weeks after the Corona virus infection.
Last update: October 2023
Why and how does Long COVID come into being?
Why and how exactly Long COVID arises is currently still unclear. In principle, long-term health effects can also occur after many other infections. The COVID-19 pandemic and the reported long-term consequences following infection with the SARS-CoV-2 coronavirus are of a particular magnitude. It is therefore important to investigate the underlying causes in detail. Research into this will continue. However, there is widespread scientific agreement that there are different mechanisms of disease development for Long COVID, and that Long COVID is not a consistent disease pattern.
The large number of different symptoms of Long COVID can possibly be explained by how the coronavirus enters the human body: The virus enters the body through certain receptor sites, i.e. the so-called ‘ACE2 receptors’. These receptor sites are present in many tissues and organs in the human body. This could explain why the complaints in Long COVID are so varied and affect different organs. ACE2 receptors are also present on the inner surface of blood vessels. When the coronavirus adheres to the ACE2 receptors, this can cause inflammation and activate the immune system. On the basis of these processes, some theories that could be significant are currently being researched and discussed.
Here is an overview of the scientific theories on the origin of Long COVID:
- One theory is that Long COVID is the result of a so-called autoimmune reaction. In autoimmune reactions, the immune system is directed against the body's own cells. Normally, the immune system only fights changed cells in the body, as well as pathogens and foreign substances. After a COVID-19 illness, the immune system is clearly activated. According to the theory, the immune system then also attacks the body's own cells after a COVID-19 illness. Thus, some researchers also suggest that Long COVID can trigger autoimmune diseases or accelerate their emergence.
- Another theory suggests that Long COVID is caused by prolonged inflammation in the body. According to this theory, the coronavirus activates the immune system for the long term and keeps it on alert. This could lead to persistent inflammation in organs such as the kidney, lung or brain.
- Some researchers assume that even weeks to months after infection with the coronavirus, remnants of the virus remain in the body. These viral remnants could cause ongoing discomfort and inflammations in the body. The immune system may then remain activated on account of the viral remnants in the body.
- Another theory is that Long COVID produces tiny blood clots, i.e. so-called ‘microclots’. These blood clots could lead to the smallest blood vessels not being supplied with blood properly (impaired microcirculation). This impaired blood circulation could partly explain various complaints in Long COVID. These include persistent fatigue, shortness of breath, impaired mental abilities, palpitations and pain.
- It is also being discussed whether activation of the Epstein-Barr virus (another virus that causes “glandular fever”) could also be a possible cause of Long COVID. Researchers have long suspected that the Epstein-Barr virus can exacerbate symptoms of other diseases (such as autoimmune diseases, and also ME/CFS).
- An altered composition of the gut flora could also be involved in the development of Long COVID.
- There is no conclusive scientific agreement on any of the theories so far, and research on Long COVID is still ongoing.
What is PICS?
Patients, who have had to be treated in an intensive care unit as a result of COVID-19, can suffer from post-intensive care syndrome (PICS). Possible symptoms of PICS include muscle weakness and mental and psychological disorders. These adverse effects can be severe.
Sources:
https://www.nature.com/articles/s41591-022-01810-6
https://www.frontiersin.org/articles/10.3389/fmed.2020.594495/full
https://www.aerzteblatt.de/archiv/229207/Post-COVID-Syndrom
https://www.the-scientist.com/news-opinion/long-covid-likely-doesn-t-have-just-one-cause-70559
https://www.nature.com/articles/s41590-021-01113-x
https://www.infectopharm.com/wp-content/uploads/Long-Covid_V1_August_2022_web.pdf
https://pubmed.ncbi.nlm.nih.gov/34425843/
https://doi.org/10.1038/s41575-022-00698-4
https://doi.org/10.1016/j.cell.2022.01.014
https://insight.jci.org/articles/view/152346
https://www.nature.com/articles/s41575-022-00698-4
Further information:
https://www.rki.de/SharedDocs/FAQ/NCOV2019/FAQ_Liste_Gesundheitliche_Langzeitfolgen.html
Last update: October 2023
How common is Long COVID?
It is not yet possible to say for sure how many people are affected by Long COVID. For one thing, this is because the complaints associated with Long COVID are very complex. On the other hand, it must be taken into account that possible physical and psychological complaints after an infection with the SARS-CoV-2 coronavirus can also have other causes. These include, for example, general stresses due to the pandemic period. In order to distinguish such complaints from Long COVID, it is necessary to compare people who have been infected with the coronavirus with other people who have not previously been infected with the coronavirus. In some studies, a comparison is also made with people who were ill with a viral flu (influenza) before the COVID-19 pandemic. According to these findings, long-term health consequences seem to occur more frequently and last longer after infection with the coronavirus than after contracting the viral flu, for example.
Several factors also make it difficult to assess previous studies: For example, the studies sometimes use different definitions for long-term health effects of COVID-19. Some studies refer to any long-term effects that persist for longer than 4 weeks after infection with the coronavirus. Other studies only refer to long-term effects that last longer than 12 weeks after infection. In addition, the studies sometimes take into account different complaints and various influences, such as previous illnesses. Furthermore, for example, different research methods complicate the evaluation of the studies.
The study results about the frequency of Long COVID are also influenced by who participated in the study. This is because many factors influence whether someone contracts Long COVID. These include age, gender, pre-existing health risks such as pre-existing illnesses and the severity of somebody’s COVID-19 illness. One must also take into account whether a person has been fully vaccinated against the coronavirus and when and how often they have already contracted the virus. Thus, it also matters whether a study was conducted earlier or later in the COVID-19 pandemic.
For more information, please also read the answers to the questions ‘How do different variants of the SARS-CoV-2 coronavirus affect the risk of Long COVID?’ and ‘What factors influence the personal risk of contracting Long COVID?’.
Sources:
https://doi.org/10.1038/s41579-022-00846-2
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)01214-4/fulltext
https://www.nature.com/articles/s41467-022-33415-5
https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1003773
https://www.bmj.com/content/371/bmj.m4677
https://www.nature.com/articles/s41467-022-30836-0
https://pubmed.ncbi.nlm.nih.gov/36229057/
https://doi.org/10.1093/ofid/ofac333
https://pubmed.ncbi.nlm.nih.gov/36133318/
Further information:
https://www.nature.com/articles/s41586-021-03553-9
https://www.rki.de/SharedDocs/FAQ/NCOV2019/FAQ_Liste_Gesundheitliche_Langzeitfolgen.html
Last update: June 2023
How do different variants of the SARS-CoV-2 coronavirus affect the risk of Long COVID?
The issue of whether the risk of developing Long COVID differs depending on the virus variant cannot yet be conclusively assessed. The data available on this is still limited.
However, there are indications that the frequency of Long COVID could differ depending on the virus variant. According to this, compared to earlier virus variants, infection with the omicron variant seems to more rarely lead to Long COVID symptoms. However, the number of studies on this topic is still limited, and the findings to date are very inconsistent.
Sources:
https://www.mdpi.com/1999-4915/14/12/2629
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9785120/
https://www.thelancet.com/journals/landig/article/PIIS2589-7500(23)00056-0/fulltext
https://pubmed.ncbi.nlm.nih.gov/36498103/
Further information:
https://doi.org/10.1371/journal.pone.0281429
https://pubmed.ncbi.nlm.nih.gov/36905145/
https://doi.org/10.1038/s41467-022-35240-2
Last update: June 2023
What influences the personal risk of contracting Long COVID?
At present, there is no reliable data to make a reliable statement on this. However, there are initial research findings on possible risk and protective factors for Long COVID. Many studies agree that certain factors can increase the risk of Long COVID.
Age and gender:
Older people seem to be affected more frequently than younger people. Also, women are probably affected more frequently than men. A research study has analysed data from 22 countries to this end. Of those affected by Long COVID, 63.2 per cent were female. 3 months after contracting COVID-19, 9.9 per cent of women and 4.8 per cent of men were affected by Long COVID. Therefore, women had approximately around twice the risk of contracting Long COVID as men.
Pre-existing health risks:
An analysis of data from 41 studies has shown that in addition to age and gender, other factors can increase the risk of Long COVID. These include pre-existing health risks such as smoking and various physical and mental illnesses such as asthma, chronic obstructive pulmonary disease (COPD), diabetes, coronary heart disease, anxiety disorders and depression. Other risk factors may include certain connective tissue diseases and allergies. In addition, the flare-up of an infection with the Epstein-Barr virus is being discussed as a possible risk factor. Long COVID could also be favoured by certain antibodies, which are directed against the body's own cells (so-called autoantibodies).
Recent studies of insurance data from the USA also indicate that the risk of long-term consequences increases if you are infected with the Corona virus several times.
Severe course of COVID-19 disease:
People also have an increased risk of Long COVID if they have had a severe course of COVID-19 and have had to be hospitalised. In a comprehensive review, people with severe COVID-19 were more than twice as likely to have Long COVID as people with mild COVID-19.
Protection through the COVID-19 vaccination:
Various studies have found that vaccination against COVID-19 may offer some protection against Long COVID. If adults were vaccinated twice before contracting COVID-19, they had a lower risk of contracting Long COVID.
You will receive more information at the Federal Centre for Health Education (BZgA) on possible Protective measures against the Corona virus. You will also find information on the Corona vaccination there and can get your current vaccination recommendation with the help of the Corona vaccination check.
For more information, see the FAQ: “How do different variants of the SARS-CoV-2 corona virus affect the risk of Long COVID?”
Sources:
https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2802877
https://www.mdpi.com/2077-0383/11/24/7314
https://pubmed.ncbi.nlm.nih.gov/36215063/
https://academic.oup.com/jid/article/226/9/1593/6569364
https://pubmed.ncbi.nlm.nih.gov/35216672/
https://pubmed.ncbi.nlm.nih.gov/36319780/
https://pubmed.ncbi.nlm.nih.gov/36774332/
https://www.nature.com/articles/s41591-022-02051-3
https://pubmed.ncbi.nlm.nih.gov/35717982/
https://www.nature.com/articles/s41467-022-35240-2
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9785120/
https://escholarship.org/uc/item/9292w8n6
https://doi.org/10.1001/jamainternmed.2023.0750
https://www.infektionsschutz.de/coronavirus/schutzimpfung/
https://www.infektionsschutz.de/coronavirus/fragen-und-antworten/sich-und-andere-schuetzen/
https://www.infektionsschutz.de/coronavirus/schutzimpfung/der-corona-impfcheck/
Further information:
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0281429
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9905096/
https://www.nature.com/articles/s41579-022-00846-2
Last update: October 2023
Which symptoms can arise in Long COVID?
Long haulers report a number of Long COVID symptoms. The symptoms arise individually or in combination and change to some extent in the course of time. Researchers are working on understanding the clinical pattern of Long COVID better. Since some of the symptoms resemble one another, they are sometimes combined into so-called symptom complexes at present. The frequently arising symptom complexes are briefly explained below:
1. Fatigue and stress intolerance
An acute, prolonged weakness and exhaustion rank among most frequent symptoms in Long COVID. This is also called as “fatigue”. The Institute for Health Metrics and Evaluation (IHME) at the University of Washington School of Medicine estimates that fatigue affects around half of the Long COVID patients. They report for instance, being exhausted especially quickly or needing extraordinary amount of quiet. However, breaks or sleeping rarely improve the symptoms or only for a short-term.
The fatigue is also accompanied by a so-called stress intolerance in part. This is also called as PEM (Post Exertional Malaise). In a PEM, the symptoms can already worsen by a mild physical or mental exertion such as brisk walking or mental effort. It is also called as “Crash”. “Crash” means “collapse” or “hard setback”.
The stress intolerance is also the most important feature of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS). This illness is also accompanied by acute exhaustion, stress intolerance, mental problems and aches. The long haulers are often greatly restricted in their daily routine. According to researchers, ME/CFS can also arise in a section of COVID long haulers. What exactly leads to this illness is not yet known. It also arises as a consequence of other infectious diseases (also see the answer to the question “Do Long COVID and ME/CFS overlap?”)
2. Lung and respiratory problems (pulmonary symptoms)
According to the Institute for Health Metrics and Evaluation (IHME), around 60 per cent of the COVID long haulers suffer from symptoms affecting the lungs. Such symptoms can be, for example, persistent coughing or breathlessness. Breathlessness can occur in resting phases as well as under mild strain, for example, while climbing stairs. Long haulers then frequently have an oppressive feeling in the chest and can no longer take a deep breath.
A so-called pulmonary function diagnosis can detect how heavily the lung is actually affected. It tests, among other things, how much air can the lung take in per breath (respiratory volume). The speed at which the breath flows can also be measured. In people with Long COVID, the lung often has a lower capacity to take up gases and transport oxygen in the blood. In many cases, there are also changes in the lung, which can be seen by X-ray or a computer tomography (CT). Thus, large scars can be found on the lung in many of the patients with the corresponding symptoms.
An increased risk of lung problems was observed in people with asthma. A section of COVID long haulers also has malfunctions in the respiratory muscles.
3. Cardiovascular symptoms
Apart from the lung, the heart can also be affected due to a COVID-19 illness. People with high blood pressure or a pre-existing heart condition can be especially vulnerable. Long haulers can suffer from chest pains or irregular heart rhythms.
Reviews on this topic have appeared in the US American journal Annual Review of Medicine. There is a conclusion in it that the risk for cardiovascular incidences can be increased after a Corona virus SARS-CoV-2 infection. This is true for people, who were treated in the hospital for COVID-19 as well as for those who did not have to go to the hospital. The increased risk was in a period of 30 days to 4 months after the infection. Having said that, the data situation on the risk and frequency of cardiovascular symptoms in the course of time still does not allow a consistent statement. Some other studies examined long haulers, who were in the hospital due to COVID-19 and who first had symptoms such as cardiac arrhythmia. These symptoms receded after 6 months at the latest in majority of the long haulers.
The blood vessels can also be damaged. According to some research findings, this can be caused by inflammations and tiny blood clots. Increased frequency of thromboses was also described. In thromboses, blood forms clots in the vessels and block them fully or partially.
4. Problems of brain and nerves (cognitive and neurological symptoms)
Typical Long COVID symptoms also affect the mental capacities as well as the nervous system. The Institute for Health Metrics and Evaluation (IHME) estimates that around more than a third of the Long COVID patients suffer from these problems. Among other things, long haulers report headaches as well as problems in sensations, memory, or concentration. These symptoms are also called as “brain fog” that is, a “foggy feeling in the brain”. Some long haulers find it difficult to speak fluently. They also have the feeling that their brain processes the information slower than prior to the infection.
Researchers analysed 2 years of data of more than one million people after a COVID-19 illness. In the process, they also came to the conclusion that problems of the nervous symptoms can arise as long-term effects. They also found indications of long-term psychological effects. There were 14 different neurological and psychiatric diagnoses in the analysis, which set in after an infection. The most frequent were anxiety and mood disorders, but also dementia, strokes, and psychotic disorders such as schizophrenia. However, we have to bear in mind here that these disorders are anyway prevalent in the population. It is still not verified whether the Corona virus infection was the real cause of these disorders in the long haulers.
5. Type 2 diabetes
A type 2 diabetes could also be a potential long-term effect of COVID-19. A study on this from Germany was published in the journal Diabetologia. In the study, type 2 diabetes newly occurred more frequently among 35,000 people after a COVID-19 illness than in a comparison group. This comparison group consisted of people, who had other infectious respiratory disease. Studies from other countries also came to the conclusion that a newly occurring type 2 diabetes can be possible consequence of a Corona virus infection. Meanwhile, there are also studies, which found a link between a Corona virus infection and suffering from type 1 diabetes.
Other long-term effects
There are other illness and symptoms, which were reported after a Corona virus infection. A review names the following among others:
- Autoimmune diseases
- Damage to organs (for example, kidneys, liver, spleen)
- Venous thromboses
- Erectile dysfunction
- Menstrual disorders or more severe symptoms before menstruation
- Stomach aches
- Nausea
- Sleep disturbances
- Tinnitus
Which long-term effects should be distinctly attributed to the Corona virus infection is not clear as yet. We also don’t know yet, how frequently and in which combination the symptoms can arise. Further research is necessary to understand these things and to be able to help long haulers accordingly.
Sources:
https://link.springer.com/article/10.1007/s00108-022-01371-3
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9261889/
https://www.annualreviews.org/doi/pdf/10.1146/annurev-med-043021-030635
https://www.herzstiftung.de/ihre-herzgesundheit/coronavirus/post-covid-herzschaden-therapie
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8923743/pdf/125_2022_Article_5670.pdf
https://pubmed.ncbi.nlm.nih.gov/36380329/
https://pubmed.ncbi.nlm.nih.gov/36418912/
https://pubmed.ncbi.nlm.nih.gov/35654679/
https://www.mdpi.com/2077-0383/12/3/1159
https://www.medrxiv.org/content/10.1101/2023.01.25.23285014v1
Last update: June 2023
What is the prognosis of Long COVID?
There is no reliable data available on the prognosis of Long COVID. One of the reasons for this is that the results of previous studies cannot be applied to the entire population. Initial studies show that many people with Long COVID have symptoms that go away or disappear in the first few months. However, the symptoms can also last longer than 12 months.
In some studies, researchers have looked at how people feel after they have COVID-19 over a longer period of time. A comprehensive review in the journal Pathogens compiled the results of 18 studies. A total of 8,591 long-term COVID sufferers were examined 12 months after infection with the SARS-CoV-2 coronavirus. The results indicate the following: When affected persons are interviewed after only a few months, they report complaints more frequently than when they are interviewed after a longer period. However, some complaints seemed to be more persistent than others. After 12 months, the following complaints occurred with varying frequency among those surveyed with Long-COVID: Fatigue and tiredness (28 per cent), muscle and joint pain (26 per cent), depression (23 per cent), anxiety disorder (22 per cent), memory problems (19 per cent), shortness of breath (18 per cent), difficulty concentrating (18 per cent) or sleep disturbances (12 per cent).
According to another review, Long COVID was more common in patients who had to be hospitalised. In addition, the symptoms lasted longer in these patients. The estimated average duration of Long COVID symptoms was 9 months in people who were hospitalised and 4 months in people who were not hospitalised. At least one of the complaints from the 3 domains "tiredness and fatigue", "impaired mental abilities" and "breathing difficulties" was present. Of the people who reported such Long-COVID complaints 3 months after infection with the coronavirus, about 15 per cent continued to have complaints after 12 months.
In summary, initial study results suggest that the course of Long COVID varies greatly from person to person. It seems that some symptoms decrease or disappear over time, while others persist for longer periods of time. Overall, more long-term research needs to be conducted in order to obtain reliable data.
Sources:
https://www.mdpi.com/2076-0817/11/2/269
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8832844/
https://pubmed.ncbi.nlm.nih.gov/36215063/
Further information:
https://www.iqwig.de/projekte/n21-01.html
https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/fulltext
https://www.sciencedirect.com/science/article/pii/S0953620521004052
Last update: June 2023
Do Long COVID and ME/CFS overlap?
What is ME/CFS?
ME/CFS is the abbreviation for Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. ME/CFS is a disease that affects the nervous and immune systems. It is often triggered after a viral illness. ME/CFS is typically characterised by severe exhaustion or fatigue that lasts at least 6 months. There is also usually an exercise intolerance. This is also called PEM (post-exertional malaise). With exercise intolerance, the symptoms can worsen even after slight daily exertion. The symptoms of exercise intolerance usually start to worsen after several hours or on the next day. It often lasts several days, weeks or even longer. In addition to fatigue and exercise intolerance, other physical and mental symptoms of varying severity can occur with ME/CFS. These include muscle pain, headaches, pain in the limbs, disturbed sleep and concentration problems.
The Institute for Quality and Efficiency in Health Care (IQWiG), based on a commission from the Federal Ministry of Health, has investigated the current scientific evidence on ME/CFS and summarised it in a report. Among other things, it assessed the advantages and disadvantages of two treatment methods and developed health information and recommendations for action.
What is the connection between Long COVID and ME/CFS?
In a study at Charité Berlin, 42 patients with moderate to severe fatigue and exercise intolerance were examined 6 months after they had COVID-19. About half of the patients matched the criteria for ME/CFS. The results of this study and other studies show that ME/CFS can occur after infection with the SARS-CoV-2 coronavirus. Initial health insurance data also confirms the assumption that ME/CFS is diagnosed more frequently as a result of the COVID-19 pandemic.
However, the studies so far are only based on investigations of comparatively few patients or on data provided by the health insurance companies. Therefore, no definitive statement can yet be made on the frequency of ME/CFS after infection with the coronavirus. However, it is clear that people affected by Long-COVID often report symptoms similar to those of ME/CFS.
In order to obtain reliable findings, it is necessary to conduct extensive studies. In addition, more in-depth research is needed on the causes of Long COVID and ME/CFS.
Last update: June 2023
What other support services are in place?
With the help of the Doctor search of the National Association of Statutory Health Insurance Physicians (KBV) you can find doctors of all specialities in your area. The search is also available in the app “116117.app”.Some health insurance companies offer their members advice or online services on corona virus, COVID-19 and Long COVID.
In addition to doctors' surgeries, health insurance companies and specialised outpatient clinics for Long COVID, there are many other places where those affected or their relatives can find help:
Psychotherapeutic support
It may be advisable to seek psychotherapeutic support if you are under emotional stress. The family doctor’s practice is also the first port of call for this. The website of the German Psychotherapy Association provides information to affected persons on how to get psychotherapeutic help.
Support in everyday life/participation counselling
In the case of Long COVID, so-called benefits for participation may also be considered. Such benefits are intended to help people lead a self-determined life. This can include, for example, support in coping with everyday life independently, in leisure activities or in living, such as housekeeping. Free information on this topic is provided, for example, by the Supplementary independent participation counselling (EUTB®). Here, those affected can obtain advice on the possibilities for support in their personal situation.
Self-help groups and initiatives for affected persons
As with many other diseases, it can be helpful and beneficial for people affected by Long COVID and their relatives to share their experiences. The National Contact and Information Centre for the Initiation and Support of Self-Help Groups (NAKOS) provides an overview of offers for self-help and self-help groups. A leaflet of NAKOS can serve as an initial orientation guide. You can also take a look at the Long COVID platform operated by the BAG Selbsthilfe (German Self-Help Association) for an overview of various self-help groups throughout Germany. Self-help groups exist in various formats, both digital and face-to-face.
In addition to self-help groups, there are also initiatives for those affected. These were founded by affected persons with great commitment and they serve to support each other and to provide offers of help as well as information. The “Long COVID Deutschland” initiative has been created from an online self-help group on Facebook. The website now provides information for affected persons and relatives on many topics relating to the pathology.
Health apps
Nowadays, there are also apps for people affected by Long-COVID, which are offered by several health insurance companies in Germany. Apps can accompany people in their daily lives and help them cope with the disease.
Insured persons can ask their health insurance company whether an app is already offered as a health insurance benefit. If it is not yet the case, you can submit an application for cost coverage.
Telephone counselling
Our citizens’ hotline provides information on counselling and support services for Long COVID in Germany, specifically tailored to your region.
Long COVID in a professional context
Please also note our information specifically for employees and employers. In the section "Things to know about Long COVID in the occupational context" you will find information and contact points on topics such as Long COVID as an occupational accident, occupational absences due to Long COVID, Long COVID in daily working life and resuming work.
Further information and support services
You can take a look at an overview of further information and support services on our website in the service area.
Sources:
https://www.gesundheitsinformation.de/wege-zur-psychotherapie-wo-gibt-es-hilfe.html
https://www.teilhabeberatung.de/beratung/beratungsangebote-der-eutb
https://www.nakos.de/themen/corona/
https://www.nakos.de/data/Materialien/2022/NAKOS-Faltblatt-Hilfe-nach-Covid-19.pdf
Last update: October 2023
Important Information on Long COVID in Children and Adolescents
How common is Long COVID in children and adolescents?
Children and adolescents can also suffer long-term health consequences after being infected with the SARS-CoV-2 corona virus. The frequency appears to be significantly lower compared to adults.
However, the number of studies on Long COVID in children and adolescents is still limited. Most studies have analysed Long COVID in adults.
However, there are initial indications as to which children and adolescents may be at increased risk of Long COVID. These include:
- Girls,
- Children and adolescents with certain pre-existing conditions and
- Children and adolescents who were hospitalised due to a severe case of COVID-19.
In this age group, it is also particularly challenging to differentiate the long-term health consequences, after infection with the corona virus, from other health consequences of the pandemic. Such other consequences can arise, for example, from the fact that children and young people had fewer social contacts during the pandemic and that there was temporary distance learning. A comprehensive research study has summarised the results of 23 reviews and 102 individual studies. This research estimates the prevalence (frequency of a disease in the population at a given time) of Long COVID in children and adolescents at 2 to 3.5 per cent. Another review was published at the end of 2022. In this review, 22 studies were analysed and the available data on Long COVID in children and adolescents was still described as very inconsistent and only of limited significance.
The Robert Koch-Institut, on its website, informs about the latest results of various studies.
Last update: October 2023
What symptoms do children and adolescents with Long COVID have?
If one compares the frequency of Long COVID-like symptoms in children and adolescents after infection with the corona virus with the frequency in people of the same age without infection, the results of previous studies differ: Some studies have not yet shown any clear differences. However, in a review, certain symptoms occurred more frequently in children and adolescents under the age of 19 after infection with the corona virus than in people of the same age without infection. These complaints included impaired mental capacity, headaches, loss of smell, sore throat and sore eyes. However, no difference has been shown for other complaints compared to people of the same age without infection. These complaints included abdominal pain, cough, fatigue, insomnia, muscle pain, diarrhoea, fever, dizziness and shortness of breath.
Another major study with insurance data from Germany suggests that children and adolescents with Long COVID are more often tired and exhausted compared to people of the same age without Long COVID. But numerous other physical and psychological complaints also seem to occur more frequently.
Similar to adults, females appear to be more affected. In addition, pre-existing conditions and a severe course of COVID-19 appear to favour Long COVID. There are also indications that adolescents are more likely to develop Long COVID than younger children. According to reports, many complaints in children and adolescents disappear after a few months. As a result, those affected also make less use of medical care over time.
To summarise, it can be said that children and adolescents with Long COVID suffer more frequently from fatigue, olfactory disorders and anxiety than children and adolescents who are not affected by the disease. According to current findings, affected children and adolescents have a lower risk of developing myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) than adults.
The Robert Koch-Institut, on its website, informs about the latest results of various studies.
Sources:
https://www.nature.com/articles/d41586-021-01935-7
https://www.ssph-journal.org/articles/10.3389/phrs.2022.1604501/full
https://europepmc.org/article/pmc/pmc9476461
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8997013/
https://www.sciencedirect.com/science/article/pii/S0163445321005557
https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1004122#sec018
https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1004122
https://pubmed.ncbi.nlm.nih.gov/34210789/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9987792/
https://www.nature.com/articles/d41586-021-01935-7
Further information:
https://www.nature.com/articles/d41586-022-00334-w
https://www.rki.de/SharedDocs/FAQ/NCOV2019/FAQ_Liste_Gesundheitliche_Langzeitfolgen.html
Last updated: October 2023
What contact points are there specifically for children and young people?
If parents and guardians are concerned that children or adolescents could be suffering from Long COVID, they should always consult their paediatrician or family doctor first. Help can either be provided directly or a referral can be made to a specialist practice.
Long COVID speciality practices have now also been set up for children and adolescents, as well as special consultation hours in clinics for persons suffering from Long COVID.
You can also find further specialised outpatient clinics via the citizens’ hotline or service table. Information on special rehabilitation programmes for children and adolescents can be found on the corresponding pages of the Deutschen Rentenversicherung and the Bündnisses Kinder- und Jugendreha e.V.
Another way to find out about dealing with Long COVID is to share experiences with other affected persons or relatives in self-help groups.
At the National Contact and Information Centre for the Encouragement and Support of Self-Help Groups (NAKOS), affected persons and parents can find out about self-help groups on the topics of COVID-19 and Long COVID in their area or online. A NAKOS leaflet summarises the diversity and benefits of self-help groups. The Federal Self-Help Working Group (BAG Selbsthilfe) also offers a platform to search for self-help groups in your area.
The “Long COVID Deutschland” initiative has been created from an online self-help group on Facebook. Its website now provides information for affected persons and relatives on many topics relating to the pathology.
Sources:
https://www.deutsche-rentenversicherung.de/DRV-bietet-spezielle-Reha-fuer-Kinder-und-Jugendliche
https://www.kinder-und-jugendreha-im-netz.de/chronisch-krank-nach-corona-reha-hilft/
Further information:
https://link.springer.com/article/10.1007/s00112-021-01408-1
https://www.rki.de/DE/Content/InfAZ/N/Neuartiges_Coronavirus/Daten/Klinische_Aspekte.html
Last updated: October 2023
What needs to be considered when dealing with affected children and adolescents?
As with any disease, it is important to rule out other possible causes for the symptoms observed in the case of Long COVID. For this reason, children and adolescents must first undergo a thorough general diagnosis by means of a medical history, blood tests, physical examinations and, depending on the symptoms, possibly extended laboratory diagnostics, functional tests or imaging diagnostics.
If a child still shows clear signs of illness 4 weeks after a corona virus infection, parents should contact their child's paediatrician. The most common complaints of children and adolescents affected by Long COVID include difficulty concentrating, headaches, loss of sense of smell and taste, sore throat, and also abdominal pain, cough, fatigue, insomnia, muscle pain, diarrhoea, fever, dizziness and shortness of breath.
In most cases, it is sufficient for the affected children and adolescents to take it easy physically and avoid overly intensive sporting activities (also see FAQ “What is Pacing?”). The symptoms usually subside completely after a few weeks. Nevertheless, regular specialist care from a paediatric or adolescent medical practice should also be ensured during this time in order to be able to recognise and treat more severe courses of Long COVID in good time.
In children and adolescents, infections with SARS-CoV-2 are often mild or even asymptomatic. Nevertheless, they are also repeatedly affected by Long COVID. However, the disease often progresses differently in children and adolescents than in adults. Care must therefore be tailored to the specific needs of children and adolescents. Unfortunately, the data on the effects of Long COVID in children and adolescents is still limited.
However, it is known that the disease manifests itself in very different courses. As a result, depending on the severity of the disease, it also has different effects on the affected children and adolescents, for example in terms of quality of life, absentees in schools, leisure activities, etc. This is precisely why particularly sensitive and individualised support is required.
Medical care:
- The diagnosis of "Long COVID" is still based on a diagnosis of exclusion, as there is no laboratory marker or other test to determine the clinical picture. This means that other possible diseases must first be ruled out.
- Medical treatment is primarily based on the physical symptoms of the child affected by Long COVID. The clinical picture of Long COVID has many different faces and many different symptoms can occur. The treatment must therefore be tailored precisely to the child's existing physical symptoms. (also see www.rki.de /What is Long COVID)
- Depending on the extent to which the child is individually affected, regular medical examinations and monitoring of the symptoms should take place. For bedridden children, telephone and video consultations or outreach services can provide helpful support.
Psychological support:
- Some children suffer from psychological problems as a result of their illness. In consultation with the paediatrician treating the child, it can be helpful to include psychological support in the treatment.
- In addition to psychological counselling, social support can also provide additional help in the case of psychological complaints such as anxiety, depression or concerns about possible social isolation. Family members and friends can strengthen the affected child and create a supportive social network.
- In order for this to succeed, education about the clinical picture is indispensable for a better understanding and thus at the same time for a greater open-mindedness towards the complaints of the affected children and adolescents. Existing fears or uncertainties can be countered by providing age-appropriate information about Long COVID. On the other hand, it is important to reduce possible stigmatisation and enter into dialogue in order to promote acceptance of this disease among fellow human beings.
- Organising (virtual) group activities and/or meetings with other children and young people who have had similar experiences can also be beneficial.
Educational support:
- The participation of the affected children and young people in lessons is another important aspect in order to strengthen them mentally. This requires close co-operation with teachers and school staff in order to coordinate suitable measures. Options for the children and young people concerned could include a lighter teaching load, the opportunity to attend lessons flexibly or participation through distance learning. The possible forms of teaching are regulated differently in the federal states.
Promotion of self-help:
- Parents have a key role to play in this regard. Parents are important in promoting and supporting coping strategies. This includes, for example, mindful alternation between light activities and rest breaks, which parents should carry out together with their child so that these are easier for the child. Certain exercises and rituals can also make it easier to deal with the illness. Lullabies, for example, can help with anxiety in younger children, as their melodies are simple and calming. The breathing is regulated and leads to relaxation. (see also the guideline "Long/post COVID syndrome for those affected, relatives (...)).
- Sharing experiences with other affected families in self-help groups or affected persons' associations can provide additional support in the challenging life situation in which the affected families find themselves. In addition to the realisation that they are not alone, families can benefit from the different experiences they have had with regard to the illness. There are self-help contact centres in many towns and districts. These advice centres collect information on self-help groups in the respective region (also see www.nakos.de).
Holistic approach:
- An individualised treatment plan is a basic prerequisite for a holistic therapeutic approach, as it places the affected person as an individual at the centre of treatment and also takes social, emotional, educational and physical aspects into account. Not every affected child/young person needs all the available measures. Depending on individual needs, it makes sense to work together with various specialists, for example from the fields of medicine and/or psychology, education and social work, in order to ensure appropriate support.
In May 2022, several specialist societies for paediatric and adolescent medicine published a joint consensus paper. This summarises current expert opinions on the various clinical aspects of Long COVID in children and adolescents and makes treatment recommendations. At the time of publication, however, there were still few studies on the pathology of Long COVID in children and adolescents. The publication of a so-called S2k guideline is currently planned. This guideline is currently being drawn up on the basis of the study results that are now available. It summarises practice-oriented recommendations for the treatment of Long COVID in children and adolescents in order to further improve the care of this patient group based on the current state of knowledge.
Sources:
https://www.rki.de/SharedDocs/FAQ/NCOV2019/FAQ_Liste_Gesundheitliche_Langzeitfolgen.html
https://register.awmf.org/assets/guidelines/020-027p_S1_Post_COVID_Long_COVID_2023-02-abgelaufen.pdf
https://register.awmf.org/de/leitlinien/detail/027-077
https://www.betanet.de/schulpflicht-bei-kranken-kindern.html
https://www.bergische-krankenkasse.de/blog/long-covid-bei-kindern
Further information:
https://www.rki.de/DE/Content/InfAZ/N/Neuartiges_Coronavirus/Daten/Klinische_Aspekte.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9203144/
https://www.gesundheitsforschung-bmbf.de/de/longcocid-long-covid-19-bei-kindern-14424.php
Last updated: October 2023
What is PIMS?
In rare cases, a severe inflammatory reaction occurs in children and adolescents after infection with the corona virus or COVID-19. This disease is known as “PIMS” (Paediatric Inflammatory Multisystem Syndrome) or “MIS-C” (Multisystem Inflammatory Syndrome in Children).
Its symptoms include fever, pain, low blood pressure, vomiting, diarrhoea, rash and fatigue. In addition, certain laboratory values that indicate inflammation are noticeably elevated. It is also important to rule out possible causes other than COVID-19 for the observed signs of illness.
Some of the children affected have to be treated in intensive care. However, the disease can now be treated easily. PIMS or MIS-C usually occurs around 3 to 4 weeks after infection with the corona virus. The risk of contracting PIMS is significantly lower with the Omicron variant of the corona virus than with previously known virus variants.
Sources:
https://www.rki.de/SharedDocs/FAQ/NCOV2019/FAQ_Liste_Gesundheitliche_Langzeitfolgen.html
Further information:
Last updated: October 2023
Dealing with Long COVID
What can you do to protect yourself against Long COVID?
The risk factors for Long COVID are still not clear in detail. Hence, very little is known on how to protect yourself against Long COVID. The best-possible protection is therefore avoiding a Corona virus SARS-CoV-2 infection as much as possible.
The corona virus vaccination protects against a severe course of COVID-19. People with severe COVID-19 probably have a higher risk of long-term consequences. There is also evidence that the corona virus vaccination can reduce the frequency and severity of Long COVID symptoms.
You will receive more information at the Federal Centre for Health Education (BZgA) on possible Protective measures against the Corona virus. You will also find information on the Corona vaccination there and can get your current vaccination recommendation with the help of the Corona vaccination check.
Following behavioural measures can help in lowering the risk of Corona virus infection as much as possible.
- wear a mask (mouth-nose protection or FFP2 mask) in indoor gatherings
- paying attention to regular intermittent ventilation in indoor spaces
- if you have respiratory illness, staying home as far as possible and limiting contact with other people. In case of unavoidable encounters with other people, masks should be worn if possible.
- following the rules of hygiene while coughing and sneezing (for example, sneeze in the crook of the arm)
- Washing your hands properly generally reduces the risk of contracting pathogens.
Sources:
https://pubmed.ncbi.nlm.nih.gov/36774332/
https://bmjmedicine.bmj.com/content/2/1/e000385
https://www.infektionsschutz.de/coronavirus/schutzimpfung/
https://www.infektionsschutz.de/coronavirus/fragen-und-antworten/sich-und-andere-schuetzen/
https://www.infektionsschutz.de/coronavirus/schutzimpfung/der-corona-impfcheck/
Further information:
https://www.rki.de/DE/Content/Kommissionen/STIKO/Empfehlungen/Impfempfehlungen_node.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9261894/pdf/108_2022_Article_1368.pdf
https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(22)00354-6/fulltext
Last update: October 2023
What are the first steps in case of a suspicion of Long COVID?
If you suspect that you are afflicted with Long COVID, you can initially contact the family doctor. The paediatric practice is the first point of contact for children and adolescents. You can either get immediate help here or you will be referred to a specialist practice. The attending doctor can also mediate an appointment in a specialist practice. This can be especially sensible in urgent cases. There are already COVID-19 specialised practices as well as special consultation hours for COVID long haulers. You can also arrange an appointment at the specialist practice on your own.
You can also find special points of contact using our citizens’ hotline. Also read the answer to the question “Where can I find appropriate competence centres or special outpatient clinics?”
You should bring along your personal medical documents for all the appointments, if such documents are available. These include, for example, medical findings or medication regimes. The doctors can then match the treatment precisely to the needs of the sick person.
Important: There are no certain “Tests” or lab investigations yet, which can unambiguously prove Long COVID. Instead of it, other reasons for the symptoms must first be ruled out. So, for example, the cause of tiredness or problems in concentration can also be other illnesses, deficiencies, stress or strenuous life situations.
Further information on possible examinations for typical complaints can be found in the patient guideline ‘Long/post COVID syndrome’. You can also find more detailed information in the ‘Guideline for healthcare professionals’.
Help in searching for a hospital, a doctor’s practice or outpatient clinic:
https://dkgev.deutsches-krankenhaus-verzeichnis.de/app/suche
Last update: October 2023
What can long haulers themselves do in case of Long COVID symptoms?
In a Long COVID illness, the long haulers should follow the treatment, which has been coordinated with the doctor. In addition, patients themselves can do a few things to improve their own health or to find a good way to deal with the symptoms.
A balanced lifestyle can have a positive effect on physical and mental health. This means: It is important to look after yourself and not to neglect your own needs. This can also mean a walk in the fresh air or taking a break on the sofa. Alcohol and smoking should be avoided if possible. Eating a balanced diet and keeping yourself hydrated enough also supports your own health. In the patient guideline ‘Long/Post-COVID syndrome’ you will find precise nutritional recommendations and other measures you can take to promote your health. Good to know: With a balanced diet, it is generally not necessary to take dietary supplements such as vitamin supplements.
Persons affected by Long COVID can find it difficult to talk about their symptoms with those around them. However, being open about the illness often helps to get support. Friends and family can help with everyday life or support in organising medical appointments. They can also support those affected during visits to the doctor. Sometimes it is also helpful to talk to other affected persons or relatives.
Note:
For all the techniques for dealing with Long COVID symptoms: As the illness is extremely varied, it also applies that different things help different people. The exercises and strategies listed below should not be the sole treatment but always supplement the medical treatment. In addition, long haulers should coordinate these measures with the attending doctor.
1. Handling breathlessness
Pressure on the chest, shortness of breath or the feeling of not getting enough air can cause anxiety. It is important to stay calm in order to not reinforce such feelings. If you feel overstrained after brief exertion and you start getting breathless, a break can help. Then the breathing can normalise.
You can also take up various body postures that make breathing easy. These include:
- sitting leaning forward with arms laid down on the table and head laid down
- flat prone position with the head turned to the side
- lying on your side with bent knees and elevated head
- sitting leaning forward with arms laid down on the legs
- standing leaning forward, with support
- standing with the back leaning on the wall, drooping arms and feet hip-width apart
Long haulers can also learn certain breathing techniques such as even and controlled breathing. It can help to get air better in light everyday activities.
2. Exercise and sporting activity
If long haulers had to spend a long time at home or in the hospital because of contracting COVID-19, then the muscles can become weakened. The physical capacity can be greatly restricted. That is why, exercise is important to gradually recover the strength and endurance. But while doing so, you must strictly pay attention to your own body. If you suffer from quick exhaustion (fatigue) or a stress intolerance, a brief exertion can already worsen the symptoms. In this case, long haulers should organise their own resources as sparingly as possible and avoid strains, which can lead to a worsening. More information on this strategy that is called pacing is given in our answer to the question “What is pacing?” and the website of the German Society for ME/CFS.
If there is no stress intolerance, the activities can be stepped up gradually. The so-called Borg-scale can be helpful to this end. Here, the long haulers estimate various activities and state how strenuous they feel these are on a scale of 0 to 10. 0 is the resting state or rather no exertion, and 10 the value for maximum exertion. Maintaining a stress diary can help. Long haulers can grade all the activities that they do in everyday life in the diary. In this way, you can learn to listen to your body. In addition, you can gradually step up the strains according to your own feeling.
3. Dealing with persistent exhaustion
Many COVID long haulers report tiredness and physical and mental exhaustion, which frequently recurs or continues. In any case, long haulers should first talk to their doctor as these symptoms are not of just ordinary exhaustion.
Furthermore, long haulers can also try to design everyday life according to the available strengths, if possible. Setting your priorities and properly planning in advance can be helpful. Long haulers should try to put aside tasks that are not absolutely necessary, at least initially. You should also avoid doing many strenuous activities one after the other. Perhaps you can do one or the other task at another time or request others for assistance.
In addition, it is important to regularly make room for breaks and recovery. A diary or notebook can help in maintaining an overview.
The most important thing is to listen to your body and to look after yourself with care. You have to treat yourself like a person, who is close to your heart. People are often much harder on themselves than on those, who are the closest to them. Your own health should be your first priority.
4. Dealing with cough and voice disorders
Cough and voice disorders occur frequently after a COVID-19 illness. Many patients report a constant scratching in the throat, which makes them cough. They get hoarseness or their upper respiratory tract and vocal chords are filled. Then there are some things that the long haulers can do:
- Long haulers should drink a lot of fluids throughout the day so that the throat does not become too dry.
- The voice should be rested and hence you should speak softly, but not whisper. Whispering greatly strains the vocal chords.
- You can inhale steam to moisten the vocal chords and alleviate the irritation in the throat. Inhalers are available in the pharmacy. In the old household tradition, you can also inhale steam from hot water in a bowl. But the water must not be boiling! Be careful of not scalding yourself.
- Avoid smoking because it aggravates the symptoms.
- Boiled sweets can moisten the throat. They should be sugar-free as far as possible. There are also special sweets in the pharmacy, which can alleviate the hoarseness.
- Breathing more through your nose than you mouth can help. That warms up the air before it reaches the lungs and hence reduces the feeling of irritation.
- Long haulers often have to cough lying down. It can help in these cases to lie on the side or elevate the head with some pillows.
- In case of severe irritation of the throat, you can also perform specific exercises that reduce the irritation.
5. Dealing with difficulty in swallowing
If swallowing foods or beverages is difficult, then long haulers should sit up and under no circumstances take meals while lying down. As far as possible, you should spend a few more minutes in upright posture, so sitting, standing or walking. Meals with different consistencies can also be tested. Porridges or soups are often easier to swallow than “sharp foodstuffs” such as baked baguette.
While eating, you should also avoid stress and plan in enough time. Thorough chewing also helps in ensuring that too big portions do not have to be swallowed. Overall, attentive eating and drinking will also assist.
6. Dealing with impaired sense of smell and taste
If long haulers cannot smell or taste well or not at all, good oral hygiene is indispensable. The teeth should be brushed twice a day and regularly cleaned with floss. However, it is also possible to stimulate the olfactory nerves and taste buds in different ways. For example, you can carry out a specific smell training. For this exercise, you can smell smell-intensive plants and spices such as clove, lemon, cinnamon, peppermint, or eucalyptus, for 20 seconds multiple times a day. You can also experiment with new spices or fresh herbs while cooking. But be cautious while doing so. Herbs and spices can aggravate the symptoms if you suffer from heartburn.
7. Dealing with problems with memory or concentration
Problems with concentration and memory rank among the symptoms in Long COVID most frequently voiced by long haulers.
- If long haulers pursue mentally challenging tasks, they should avoid distraction while doing the task. A peaceful environment with less outside noise or environmental stimuli as well as earplugs can be of help here to reduce the noise level.
- A time plan with realistic goals also helps. Long haulers should overexert themselves and approach the tasks step by step.
- Regular breaks are indispensable.
- It is best to pursue activities when you feel rested and relaxed. It can vary from person to person: While there are those who are the most focussed in the morning and get tired over the course of the day, there are others, who work in the evenings.
- Perhaps, incentives can help here in feeling motivated. They can be small things such as a cup of coffee or a walk in outdoors.
- Long haulers should pace themselves. Many people have the feeling of needing to “accomplish” something. They feel guilty if their goal is not achieved. But this frustration can lead to them feeling blocked and then being able to concentrate lesser. Even though it is easier said than done: It is important to deal with yourself carefully and not overexert yourself with too much work.
- Memos or notes in the Smartphone or calendar can help in memory problems.
8. Dealing with states of anxiety, depressions, and sleep disturbances
If long haulers have extraordinarily severe anxiety, panic attacks or a depression, they should contact their doctor. The doctor can help in receiving therapeutic support if necessary. But here as well you can take measures that should improve your own well-being.
- As far as possible, long haulers should surround themselves with people who will do them good. Even if depressive resentments are often accompanied by the desire for retreat, social contacts are beneficial. Loneliness can worsen the problems. Social contacts, on the other hand, help to reduce stress and get support.
- Similarly, pursuing a hobby or taking up a new hobby can also help.
- Activities such as yoga, meditation, relaxing baths or listening to music can also probably help in relaxing you.
- A healthy sleep is especially important for the general well-being. Some techniques can be helpful while falling asleep:
- If the eyes perceive a lot of impressions, it can be stimulating for the brain. That is why it can be helpful to not spend time on the looking at the Smartphone or computer screen 1 to 2 hours before falling asleep.
- In the second half of the day, you should avoid stimulating ingredients such as nicotine or caffeine as much as possible. Caffeine is in for example, coffee, energy drinks and black and green tea.
- It can help some people to dim the light in the evening and reduce the surrounding noises.
- Calming music, podcasts or audiobooks can also assist in falling asleep.
- Focussed relaxation techniques can also be used.
Last update: October 2023
What is pacing?
Pacing is a strategy to deal with fatigue or stress intolerance (an explanation of these symptoms is given in the answer to the question “Which symptoms can arise in Long COVID?”). It is frequently recommended for COVID long haulers and has already been use for a long time for Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS). Pacing is handling your own strengths sparingly. In this, the long haulers should learn to carefully listen to their own body and organise their strengths properly. This includes, for example, recognising and adhering to your own stress limits.
The goal of pacing is that the so-called “Crashes” occur more infrequently and have a less severe progression. In a “Crash”, the symptoms already aggravate after mild physical or mental exertion. Pacing should support long haulers in organising their activities and energy reserves. It helps in better organising your own strengths. Long haulers should learn to listen to their own body and to accurately estimate personal capacity. A diary can be helpful here to observe your own behaviour and to be able to better estimate its consequences over time. Thus, long haulers can proactively plan their activities including regular breaks. It can also be helpful to incorporate specific relaxation exercises. Among other things, a step count can be useful to measure as to with how much exercise does the long haulers feel well or sick. Then you can determine the limit for exercise. In addition, there are other methods to avoid overexertion. For example, long haulers can measure their heartbeats at rest and under stress.
You will also find an explanation on how exactly pacing works on the information site of the Deutschen Gesellschaft für ME/CFS e. V.
Even though Pacing seems to frequently play an important role in the everyday life of people affected by ME/CFS, it should be noted that there are no significant studies on the advantages and disadvantages of this strategy.
Last update: June 2023
What is the scientific evidence for the treatment of ME/CFS?
Exercise or training therapies are currently recommended for the treatment of various Long-COVID conditions. However, people with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) need to be particularly careful. This also applies to fatigue and exercise intolerance, which are common symptoms of Long COVID and are similar to ME/CFS. Depending on how severe the exercise intolerance is, symptoms can worsen even after ordinary daily exertion. The symptoms may last for hours, or even many days or weeks. If you continually exert yourself, it can lead to a long-term or even permanent worsening. For some people, therefore, practising activity therapy as a form of treatment may prove harmful.
Based on a commission from the German Federal Ministry of Health, the Institute for Quality and Efficiency in Health Care (IQWiG) has investigated the current scientific evidence on ME/CFS and presented it in a report that is easy to understand. This report was published on 15 May 2023. Among other things, it shows that ME/CFS is still poorly understood overall and that the data on treatment is insufficient. The benefits of two forms of treatment were studied in more detail: activity therapy and cognitive behavioural therapy.
People with ME/CFS and researchers have reported that activity therapy can cause a potentially serious worsening of symptoms. Therefore, after weighing the advantages and disadvantages, IQWiG concluded that activity therapy fails to yield a clear benefit.
The benefits of cognitive behavioural therapy are rated more positively. This is a form of psychotherapy in which, for example, the patient works on his or her own thoughts and expectations as well as on behaviour. This treatment has, for example, positive short- and medium-term effects on fatigue, social participation or the feeling of illness after exertion. This is especially true for mildly affected patients.
Overall, the data available for the various forms of treatment is still insufficient. Therefore, it is not possible to make a general recommendation. The focus is on the treatment of the individual complaints. It makes sense for people with ME/CFS and similar long COPD symptoms to discuss with their doctors which treatments are suitable for them.
Last update: June 2023
Where can people with Long-COVID find appropriate centres of expertise or specialised outpatient clinics?
There are now numerous contact points for those affected to turn to with Long COVID complaints. However, the number of requests for help is indeed overwhelming. Therefore, the search for a suitable outpatient clinic can take a long time.
The initial consultation should always take place at the family doctor's clinic. The general practitioner coordinates further assessment with specialists and supportive treatments such as physiotherapy, respiratory therapy or occupational therapy, or even rehabilitation. The consultation with a Long COVID specialist outpatient clinic or a centre of expertise should be coordinated with the family doctor's clinic. Family doctors are usually familiar with special outpatient clinics and clinics in the region and can help in a systematic way.
With the help of the Doctor search of the National Association of Statutory Health Insurance Physicians (KBV) you can find doctors of all specialities in your area. The search is also available in the app “116117.app”. Affected people can also check the website of their health insurance company. Most health insurance companies now offer guidance to help with the search.
The German Hospital Directory also offers a special search function. In this, people affected can filter the search results specifically according to their region and the keywords "Long COVID" or "Post COVID". This allows them to find suitable hospitals.
Our citizens’ hotline provides information on counselling and support services for Long COVID in Germany, specifically tailored to your region.
You can also find a list of medical practices, clinics and outpatient clinics in Germany on our website in the service area, so that people affected by Long COVID can get in touch with them.
Last update: October 2023
How are the Federal Ministry of Health (BMG) and Federal Ministry of Education and Research (BMBF) promoting research on Long COVID and ME/CFS?
The Federal Government considers it extremely important to support scientists in basic research, clinical research and healthcare research. The Federal Ministry of Health (BMG) initiates projects within the framework of departmental research. The Federal Ministry of Education and Research (BMBF) is responsible for the general research funding at the federal level. Overall, there is an intensive interaction between BMG and BMBF as well as with the other departments involved.
Research funding of Federal Ministry of Education and Research (BMBF)
The Federal Ministry of Education and Research (BMBF) is largely responsible for research among the federal departments. The BMBF is systematically promoting research activities on Long COVID or Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). This happens under the umbrella of the Federal Government’s framework program for health research. The focus of BMBF funding is on long-term effects that persist 12 weeks and longer after the Corona virus SARS-CoV-2 infection, the so-called Post COVID (for an exact definition, see the question “What is Long COVID and how is it different from Post COVID”).
On one summary page, the BMBF informs of its research funding as well as the funded projects.
In May of 2021, BMBF published a guideline for “Funding of research projects on late symptoms of COVID-19 (Long COVID)”. This way, the knowledge and experiences with this illness available only locally to some extent should be tapped and made accessible for practical application as expeditiously as possible. To this end, 10 research associations are funded with a total of 6.5 million euros.
In addition, the BMBF is funding the development of a National Clinical Study Group (NKSG) of Post COVID syndrome and ME/CFS at the Charité – Medical University of Berlin with 10 million euros from October 2022 to prospectively end of 2023. This will develop a research platform. Clinical studies shall be conducted on this platform with already approved drugs and medical devices for Post COVID and ME/CFS. All the studies are accompanied by a comprehensive program. The program should help in better understanding the disease mechanisms and potential biomarkers will be explored. Such biomarkers can be certain biochemical features that could be helpful in the diagnosis of Post COVID.
Another measure has been started in September 2022. The BMBF is providing 6 million euros to explore interactive technologies that can serve in the diagnosis of Post COVID or support healthcare.
Besides this, long-term population studies are funded, which also provide important insights. For example, the health status of people who contracted COVID-19 is monitored for a long term in the NAPKON cohorts (Patient groups of National Pandemic Cohorts Network) of the Network of Medical University (NUM). That should enable us to draw conclusions on the risk factors and disease mechanisms.
The long-term effects after a Corona virus infection are also examined in the excellent institutes for health research under various projects. The research institutes are mostly financed for the long term by BMBF. To name a few examples, the Helmholtz Centre for Infection Research (HZI), German Centre for Neurodegenerative Diseases (DZNE) or Berlin Institute of Health (BIH).
The BMBF also supports the joint projects IMMME – Understanding the immunological pathomechanisms of post-infection Chronic Fatigue Syndrome (ME/CFS) with around 2.2 million euros. The project researches ME/CFS after viral diseases. The support is provided as a part of a funding initiative for interdisciplinary collaborations that research the disease mechanisms. The project shall research the causes and mechanisms underlying the illness and connected with the immune system. In addition, the so-called biomarkers, which could serve to diagnose ME/CFS should be researched further. Besides this, the treatment options for ME/CFS should be further developed.
The Innovation funds of the Joint Federal Committee (G-BA) funds an interdisciplinary healthcare concept for patients with ME/CFS from Summer 2021. The aim of the project is to improve the treatment and health status of long haulers and to allow for professional participation. A part of the project is a special hospitalized rehab concept.
Research funding of Federal Ministry of Health (BMG)
The Federal Ministry of Health (BMG) also supports the research on Long COVID. The goals are to better understand the disease and to record their frequency more accurately. Apart from that, an appropriate care should be ensured. The BMG funds several studies related to Long COVID and ME/CFS. Some examples are listed here:
- At the Robert Koch Institute (RKI), Studies are reviewed and evaluated continually and comprehensively in collaboration with other scientific partners. Studies examining the frequency and distribution of Long COVID in the population are considered in this. For example, a comprehensive review on Long COVID among children and adolescents was published.
- The RKI is conducting a long-term study based on a random sampling of population in Germany under the CoMoBu/SOEP-II Study (Corona Monitoring Bundesweit/Sozio-oekonomisches Panel [Corona Monitoring Nationwide/Socio-economic Panel]) project. The project will run from 2022 to 2023. The participants are surveyed with regard to the long-term health problems. The analyses facilitate the estimation of frequency of symptoms typical of Long COVID. We can also estimate how greatly the participants are affected by the symptoms in their quality of life and everyday life. To this end, adults with and without Corona virus infection were examined. In this case, the infection has either been verified or was reported.
- In RKI’s Post-COVID-19 project, the data of statutory health insurance (GKV) was analyzed. The data pertains to adults as well as children and adolescents. The project will run from 2021 to 2023.
- RKI is also conducting a survey of doctors in practices as family doctors and pediatric practices. The survey shall firstly record what the healthcare for long haulers looks like at present. Secondly, the problems in assessment, treatment, and referral of COVID long haulers shall be determined. The survey will also find out the information requirements of the surveyed doctors. It will be conducted in collaboration with the Institute for General Medicine of the Charité – Medical University of Berlin, the National Association of Statutory Health Insurance Physicians (KBV) as well as various professional medical societies and associations.
The BMG also supports the research by having the competent higher federal authorities processing the applications for clinical trials and development of drugs on COVID-19 with priority. Competent higher federal authorities are the Federal Institute for Drugs and Medical Devices (BfArM) and the Paul Ehrlich Institute (PEI). Certain applications are exempted of fees until 31 December 2023. That pertains to scientific consultations and clinical trials investigating drugs for the treatment of COVID-19.
In addition, the BMG wants to support interdisciplinary outpatient clinics in the future in networking with each other and with other parties concerned. So, there will be better sharing of knowledge and experiences. Thus, BMG supports the goal laid down in the coalition contract of creating a Germany-wide network of competence centers and interdisciplinary outpatient clinics. The network should promote research on all aspects of Long COVID and ME/CFS as well as ensure appropriate care of the long haulers. In order to support this goal, the BMG would like to establish a funding priority as a part of its departmental research.
The BMG also supports the development of a register and a biobank for ME/CFS. Collected samples (for example, body fluids and tissues) are collected in a biobank and linked with medical and other significant data.
Sources, BMBF-related:
https://www.mecfs.de/bmbf-foerdert-forschungsnetzwerk/
https://www.gesundheitsforschung-bmbf.de/de/13192.php
https://cfc.charite.de/klinische_studien/nksg/
https://www.bmbf.de/bmbf/shareddocs/bekanntmachungen/de/2020/10/3184_bekanntmachung
https://cfc.charite.de/weitere_forschung/immme/
https://www.gesundheitsforschung-bmbf.de/de/16423.php
https://www.gesundheitsforschung-bmbf.de/de/16755.php
https://www.gesundheitsforschung-bmbf.de/de/17113.php
Sources, BMG-related:
https://www.rki.de/DE/Content/InfAZ/N/Neuartiges_Coronavirus/Long-COVID/Evidenzanalyse.html
https://www.rki.de/DE/Content/Gesundheitsmonitoring/Studien/lid/lid_node.html
https://www.rki.de/DE/Content/InfAZ/N/Neuartiges_Coronavirus/Long-COVID/Projekt-Post-COVID.html
Sources, G-BA-related:
https://cfc.charite.de/klinische_studien/cfs_care/
Further information:
Last update: June 2023
Useful links
Information about Long COVID
- Information portal of the Robert Koch Institute (RKI) on Long COVID
- Post-COVID website of the Bavarian State Ministry of Health and Care (STMGP)
- Post-COVID website of the State Center for Health Promotion in Rhineland-Palatinate e.V. (LZG)
Search for medical practices and hospitals
- Hospital directory of the German Hospital Federation (DKG)
- Doctor search of patient service 116117 of the National Association of Statutory Health Insurance Physicians (KBV)
Dealing with Long COVID on a day-to-day basis
- Guideline ‘Long/post COVID syndrome’ for sufferers, relatives, loved ones and carers
- Information about pacing as a strategy for disease management from the German society for ME/CFS
- Consultation atlas of the supplementary independent participation consultation (EUTB
- Brochure about dealing with Long COVID symptoms of the World Health Organisation (WHO)
Communication with others
- Self-help group finder of Bundesarbeitsgemeinschaft Selbsthilfe von Menschen mit Behinderung, chronischer Erkrankung und ihren Angehörigen (Federal Association of Self-Help Organisations for people with disabilities and chronic diseases and their relatives) e.V. (BAG Selbsthilfe)
- Database and information on self-help groups on Long COVID in Germany from the National Contact and Information Centre for the Encouragement and Support of Self-Help Groups (NAKOS)
- Long COVID convention for specialists and affected persons of the doctors’ association for Long COVID
Information on ME/CFS