Useful information for patients and interested parties

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 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.

Last update: October 2023

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?’.

Last update: June 2023

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.

Last update: June 2023

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?”

Last update: October 2023

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.

Last update: June 2023

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.

Last update: June 2023

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

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.

Last update: October 2023

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.

Last update: October 2023

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’.

Last update: October 2023

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

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

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

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

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.

Last update: June 2023