Long COVID – long-term effects of COVID-19

People who become infected with COVID-19 may experience health problems for weeks or months afterwards. This situation can also occur with other infectious illnesses, such as viral flu.

If symptoms persist or recur for more than four weeks following infection or if new symptoms develop at that stage, this is known as long COVID. With post-COVID syndrome, also known as post-COVID condition, symptoms last for longer than 12 weeks following infection and are either constant for at least two months or recurring. The symptoms are only considered as indicative of long COVID if they cannot be explained in any other way.

The latest research indicates that anyone who suffers from a severe case of COVID-19 is at a higher risk of developing long COVID. However, long-term consequences are also possible following mild cases and infections without symptoms.

Long COVID can affect adults, children and adolescents alike. However, it appears to be less common among children and adolescents. To date, fewer research findings on long COVID are available for children and adolescents than for adults. As a result, there is still a lot of uncertainty in relation to the long-term health effects on children and adolescents of an infection with COVID-19, and further research is needed in this area.

There is no standard clinical picture for long COVID. People with long COVID report a wide range of physical and psychological symptoms. These can be so severe that they reduce people’s quality of life, make their everyday life difficult and impair their social life and work.

To alleviate the symptoms as far as possible and improve the quality of life and physical capacity of people with long-term effects of COVID-19, early and targeted advice and treatment are essential.

The symptoms of long COVID vary widely from person to person. They can occur individually or in combination, last for differing periods of time and vary widely in their severity.

The most common symptoms include:

• persistent weakness, fatigue and limited stamina
• a limited ability to concentrate and impaired memory, commonly known as “brain fog”
• persistent respiratory problems, such as coughing and a shortness of breath

The following symptoms may also occur with long COVID:

• muscle weakness and muscle pain
• sleep disorders and non-restful sleep
• psychological symptoms such as depression and anxiety
• lost or changed sense of smell and taste

Some people experience a deterioration in lung and kidney function following an infection with COVID-19. Complications are also possible, such as:

• cardiovascular diseases
• diabetes mellitus
• auto-immune diseases
• disorders of the nervous system

Long COVID is a condition that occurs in some people following an infection with SARS-CoV-2, the pathogen that causes COVID-19.

What exactly causes long COVID is not yet fully known. Experts assume that various disease mechanisms play a role. These can work in combination or in isolation.

Possible mechanisms include:

• Virus persistence: It is possible that parts of the coronavirus remain in the body following an acute infection. These could cause persistent inflammatory processes in the body.
• Autoimmune reactions: an excessive immune response may play a role, resulting in the immune system attacking the body’s own cells. This could make the development of long COVID more likely.
• Reactivation of the Epstein Barr virus (EBV): the virus remains in the body following an EBV infection. A weakened immune system could then cause the virus to be re-activated. It is conceivable that this re-activation could cause long COVID.
• The possibility is also being discussed that tiny blood clots may form in people with long COVID. These could block the body’s smallest blood vessels, causing impaired circulation. 
  
  

At present, there is no reliable information on how many people develop long COVID. Studies to date have produced a range of results. Part of the reason for this is that these studies have not applied one standardized definition of long COVID or have not examined it over an extended period. Based on studies from 2020 to 2021, it was estimated that around 6 to 15 percent of people developed long COVID following infection with COVID-19. More recent studies suggest that long COVID occurs with less frequency. One explanation for this is that some studies only examined symptoms that have a limiting effect on the daily lives of those affected. In a large-scale overview study from 2022, only between 1 and just under 5 percent of people were still impacted by symptoms on a daily basis 12 weeks following infection with COVID-19.

The incidence of long COVID also seems to vary depending on the virus variant – long COVID appears to occur less frequently after an infection with Omicron than with early virus variants. However, it must also be borne in mind that vaccinations against COVID-19 have, according to the latest research, reduced the incidence of long COVID. Further research into this aspect is required.

According to the latest findings, there are various known factors that are likely to increase the risk of developing long COVID. These include:

•    being female
•    having a severe COVID-19 infection
•    certain pre-existing illnesses and health risks

In addition, young adults appear to be affected by long COVID more frequently than children, adolescents, or older people. 

Studies to date indicate that, for most people, the symptoms of long COVID resolve within a matter of months. However, the symptoms last longer on average for those who were treated in hospital for a severe case of COVID-19. 

A summary of new findings in relation to long COVID is provided on the website of the Long COVID Initiative run by the Federal Ministry of Health (Bundesministerium für Gesundheit, BMG).

The best protection against long COVID is to avoid becoming infected with the SARS-CoV-2 coronavirus.

Several studies have also indicated that full immunization against COVID-19 can reduce the prevalence and severity of long COVID symptoms.

Vaccination may also have a positive effect in people who had a COVID-19 infection in the past and are showing symptoms of long COVID. However, this has not yet been proven.

The Federal Center for Health Education (Bundeszentrale für gesundheitliche Aufklärung, BZgA) offers the “Corona-Impfcheck” tool that allows people to check their own immunity.

The BZgA also provides more information about COVID-19 vaccination at www.infektionsschutz.de.

Experts have developed recommendations for diagnosing long COVID. These recommendations are being developed on an ongoing basis to improve medical care.

Various circumstances make a diagnosis more difficult. Long COVID does not present as a standard set of symptoms. There are also no specific tests or laboratory analyses that can definitively detect long COVID. Other causes for the symptoms must be excluded first. In addition, it is not always possible to establish a link with a prior COVID infection – for example, because people may have an infection without experiencing any symptoms or because an infection was not established by means of a test. 

From suspicion to diagnosis

Anyone who suspects they may have long COVID should consult a family doctor or a pediatric practice in the case of a child or adolescent. If it is known that the person has previously had a COVID-19 infection, doctors will ask which symptoms occurred during the acute phase of the illness and which are currently persisting.

They will also ask about any newly developed health issues. Details will be taken of any symptoms that were present before the original infection and have worsened since the illness.

The aim is to record all physical and psychological symptoms, as well as any limitations these have caused.

The doctor may ask the following during the consultation:

• whether and to what extent everyday social life and work are negatively affected
• whether and to what extent the person’s physical and mental capabilities are limited
• whether there are any signs of depression or increased anxiety

Depending on the type and severity of the symptoms or if the symptoms are unclear, further tests may be required, such as laboratory analyses, ECGs or x-rays. 

Details of advice and support services for long COVID are available from the phone line operated by the Long COVID Initiative that was established by the Federal Ministry of Health (Bundesministerium für Gesundheit, BMG). It is also possible to search on the website for clinics throughout Germany that diagnose and treat long COVID. 

At present, there is no treatment specifically targeted at long COVID. Treatment to date has instead been limited to alleviating the symptoms and improving quality of life and stamina. Early and targeted medical advice and treatment options are important to ensuring successful treatment.

Treatment plans

The treatments used depend on the individual symptoms and can differ widely depending on the organ system affected.

Treatment plans may include:

• regular medical check-ups 
• targeted physiotherapy (e.g., physical therapy, breathing therapy)
• occupational therapy (e.g., cognitive training)
• speech and language therapy (e.g., language or swallowing therapy)
• psychotherapy 
• pain therapy
• nutritional therapy
• treatment with medication

It is also essential for people with long COVID to learn to deal with their illness better during their daily lives. Personalized guidance from trained personnel can help them do this.

Rehabilitation by a trained, interdisciplinary team can help people with long COVID regain their physical and mental strength and resilience.

Rehab can occur in an inpatient or outpatient setting. Depending on the severity of the limitations, it is also possible to obtain aftercare and services that help people with their working life. Rehabilitation costs may be covered by various cost bearers.

The Federal Association for Rehabilitation (Bundesarbeitsgemeinschaft Rehabilitation e.V.) provides a rehab responsibility navigator, which you can use to search for the relevant cost bearer.

Specific information about rehabilitation for long COVID can be found on the websites of the German pension insurance organization (Deutsche Rentenversicherung) and the Federal Ministry for Labor and Social Affairs (Bundesministerium für Arbeit und Soziales).

COVID-19 as an occupational disease or occupational accident

In some situations, statutory accident insurance providers will recognize COVID-19 as an occupational disease or occupational accident. Those affected can contact the relevant cost bearer if they want to avail of rehabilitation measures due to long COVID.

Self-help groups offer people with long COVID and their loved ones a way of obtaining information and advice, and of sharing personal experiences.

Further information about long COVID self-help groups can be found on the website of the National Contact and Information Point for Encouraging and Supporting Self-Help Groups (Nationale Kontakt- und Informationsstelle zur Anregung und Unterstützung von Selbsthilfegruppen – NAKOS).

The website of the German national association for self-help for people with a disability or chronic illness and their relatives (BAG SELBSTHILFE e.V.) also provides information about self-help groups, long COVID and care providers.

People with long COVID may sometimes qualify for participation benefits. These are intended to help those affected to manage their daily lives, leisure time or living arrangements independently.

Personalized advice on the support options available is provided by the Supplementary Independent Participation Advice Center (Ergänzende unabhängige Teilhabeberatung – EUTB®).

What can I do?

The impact of long COVID on daily life differs widely from person to person. Various measures may help to improves overall health and to find an effective way to manage symptoms.
Many of these measures are described in the “Long COVID/Post-COVID Syndrome patient guide”.

Pacing techniques have been proven to help with exertion intolerance. These are also used by people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).  Pacing aims to help people make careful use of the body’s energy reserves to avoid stretching themselves beyond their limits.

Detailed information about ME/CFS and pacing can be found on the website of the Fatigue Center at the Charité University Hospital in Berlin.

For more information about the long-term effects of a coronavirus infection, see the website of the Long COVID Initiative set up by the Federal Ministry of Health (Bundesministerium für Gesundheit, BMG) and the website of the Robert Koch Institute (RKI).