To date, there are no reliable diagnoses, no recognized therapies, and no clear causes. Even so, the disease is there: Long Covid. The term represents the multitude of complaints that can occur after Covid-19. Many times they disappear, other times they remain and overwhelm daily life. Experts speak of Long Covid when symptoms last more than four weeks after infection, and of Post Covid when they last more than three months or only appear then. We use the more common term Long Covid for this. It is estimated that 10% of Covid-19 patients develop Long Covid. Some of them suffer from the worst form: chronic fatigue. You can only work up to a certain point or not at all.
Waiting for medication
Most doctors now assume that Long Covid is an organic disease. Even though it can cause psychological symptoms. Patients show pathological changes in the brain, muscles, blood vessels or lungs. There is no marker that can be used to clearly diagnose the disease. Nor are there drugs. The Charité is investigating a blood-washing process (immunoadsorption). So far, it has not had any lasting effects. And it is testing an active ingredient that blocks the production of autoimmune cells involved in fatigue. The heart drug BC 007, currently in trials, has a similar effect. The results will be available in 2025. The Federal Institute for Drugs and Medical Devices (BfArM) is currently working on a list of drugs that are approved for other diseases but effective for Long Covid. They could then be prescribed off-label.
Several suspected causes
Organic causes are suspected to be an autoimmune reaction, blood clots, or a chronic inflammatory reaction caused by remaining viral particles. The list of possible symptoms is long: shortness of breath, rapid heartbeat, smell, taste, and digestive disorders, muscle pain, hair loss, memory loss, poor concentration, dizziness, headaches, sleep problems, depression.
The most severe symptom, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), is marked by intense fatigue that may worsen after exertion.
A diagnosis brings relief
If you suffer from persistent symptoms after a Covid-19 illness that were not present before the infection, it is best to consult a general practitioner. However, not everyone is familiar with the complex clinical picture. Some patients say that their problems are not taken seriously or are considered psychosomatic. A new Long Covid guideline from the Federal Joint Committee (G-BA) aims to improve the treatment process for patients.
Book tip for those affected
If there is psychosocial stress, anxiety or depressive symptoms, psychotherapy is indicated for Long Covid patients. This is what Dr. Cristina Allwang says. The doctor and other experts advise those affected on how they can gain new strength, cope with the loss of work performance and ensure their existence despite being unable to work: “Post and Long Covid”2023, Stiftung Warentest Berlin, 20 euros.
Symptom relief
Experts say: Correct diagnosis is crucial for those affected because they feel relieved when they have an explanation for their suffering. Although a cure is not possible, symptoms can be alleviated. GPs may prescribe physiotherapy for symptoms such as shortness of breath, wheezing or muscle pain, or occupational therapy for cognitive problems. The Long Covid expert Claudia Ellert recommends trying relaxation techniques, such as mindfulness or autogenic training. Good stress management is also important, says the guide’s author, Dr. Cristina Allwang. For patients with fatigue, this means Rhythm. They have to learn to deal with the limits of stress that are limited by the disease.
Referral to specialist doctors
If further examinations are necessary, family doctors can refer you to specialists such as pulmonologists, cardiologists or neurologists. However, health insurance patients often have to wait a long time for appointments with them. For private patients, the institute run by pulmonologist Jördis Frommhold in Rostock offers nationwide advice for Long Covid patients via video call.
Post-Covid outpatient clinics
More in-depth examinations are possible in post-Covid outpatient clinics that have been set up in university clinics and hospitals across the country (Adresses at longcoviddeutschland.org or via the clinics’ websites). These offer outpatient therapy, but are so overcrowded that patients wait six months for an appointment.
A referral to a doctor’s office is often necessary for treatment. Preliminary findings are required and questionnaires must be completed. The severity and duration of the disease are also crucial: sometimes the symptoms last three months, sometimes six.
There are interdisciplinary outpatient clinics that refer patients to the respective specialized departments of a clinic. This is practical because affected people often present with different symptoms. And there are outpatient clinics specialized in chronic fatigue, pulmonary, cardiological or neurological complaints.
Expensive experimental therapies
Since there are still no recognised treatment methods, some doctors offer those affected privately paid therapies. These have already proven to be effective for other diseases. With the blood washing tested in dialysis – as tested by Charité – autoantibodies can also be filtered out of the blood. It costs around 1,000 euros per session. Usually several of these are necessary.
With hyperbaric oxygen therapy, patients receive clinically pure oxygen in a pressure chamber. This therapy is also used for sudden hearing loss and is intended to help treat neurological complaints. Here too, there are positive reports from those affected. Usually, they also have to pay for the treatment themselves, which costs several thousand euros.
Some rehab clinics specialize in Long Covid
Rehabilitation can also facilitate a return to everyday life. Clinical research in German pension insurance shows addresses. Some homes have specialized in Long Covid. Patients suffering from fatigue and stress intolerance PEM (post-exertional malaise) in particular need special treatment. Classic sports and exercise therapies can have negative effects on them.
Patients can specify their wishes regarding the location, region or special rehabilitation clinic. However, the allocation to a facility depends on the respective symptoms. Depending on your needs, rehabilitation clinics offer respiratory gymnastics, occupational therapy, physical training, resistance training, strength training or balneo-physical therapies.
Requirement for rehabilitation stay
People of working age who have pension insurance can apply for rehabilitation from the pension insurance company. This can be done online. Requirement: Your ability to work is reduced or threatened by the functional limitations caused by the illness. Jobseekers can apply for rehabilitation if their ability to work can be restored, as can people who receive a disability pension. Anyone who receives an old-age pension applies for rehabilitation from the health insurance company. This involves restoring everyday skills. Long Covid, an occupational disease or recognized as an occupational accident, the legal accident insurance is responsible for rehabilitation.
A medical report confirming the need for rehabilitation is required. In addition to the findings, it must also list specialist reports and previous therapies and describe which activities are no longer possible due to the illness. It must certify that the patient can participate in rehabilitation and that his or her health is likely to improve as a result. Sometimes the doctor’s report is verified by a medical report. The personal contribution towards rehabilitation is a maximum of 10 euros per day. Those with low incomes may be exempted in whole or in part from the additional contribution.
Self-help groups
Self-help also often works. There are about 100 self-help groups across the country, one List of self-help groups can be found at nakos.de. The Long Covid Germany initiative maintains a closed group for patients on Facebook. Those affected receive everyday tips – such as cooking while sitting down to save energy – as well as addresses of doctors and therapeutic ideas. Knowing that you are not alone can be empowering.