According to the experts, COVID-19 can also trigger ME/CFS. "As a result of COVID-19, post-COVID syndrome occurs in around ten percent of patients who only had a milder infection. In addition to fatigue, symptoms include difficulty concentrating, shortness of breath, headaches and muscle pain, dizziness and Stress intolerance," explains Scheibenbogen. "A small proportion of patients with post-COVID syndrome develop chronic fatigue syndrome."
CFS: Massive deterioration occurs with a time delay
The so-called post-exertional malaise (PEM) is also described as a key symptom of ME/CFS. It involves a massive worsening of symptoms after even a small amount of physical or mental exertion. For example, it occurs after even light exertion or walking just a few steps.
Even small activities such as brushing your teeth or going shopping can result in patients lying in bed for days afterwards. PEM often occurs with a time delay. This initially makes it difficult for those affected to understand their symptoms. The fatigue that occurs can typically hardly be alleviated through rest or sleep.
On the contrary: many patients suffer from sleep disorders despite their tiredness. In addition, the circulation often no longer works properly. This makes standing and sitting difficult. Very seriously ill people can no longer get out of bed and are sensitive to light and noise.
Diagnostic criteria, but not biomarkers The so-called Canadian diagnostic criteria have been developed to diagnose ME/CFS. They look at the complaints from different medical perspectives. In addition, other diseases are queried for differential diagnosis. At the end, a point scale serves as a measuring tool for the severity of the limitations the patient suffers due to the disease. It is also crucial to rule out possible other illnesses. Biomarkers that could be used to detect ME/CFS in the blood are not yet known.
Only symptoms can be alleviated There are currently no medications for ME/CFS. Therefore, only the symptoms can be treated and those affected can learn to deal with their limited resilience in everyday life. “If you have exercise intolerance and symptoms increase after light exertion, ‘pacing’ (editor’s note) is important,” explains Scheibebogen.
This means "adherence to a regular daily routine with activities adapted to the reduced resources and light physical activity such as short daily walks without overloading." Relaxation techniques such as autogenic training or breathing exercises could also help patients with ME/CFS. Treating sleep disorders, pain and circulatory problems often also helps.
ME/CFS: Too little care for common disease "ME/CFS is a common disease; it is estimated that there are at least 300,000 sufferers in Germany," explains the expert. For comparison: That's about as many people as suffer from multiple sclerosis in this country. According to the German Society for ME/CFS, this includes around 40,000 children and young people.
However, the disease most commonly occurs in people between the ages of 20 and 40. Women are affected more often than men. Over 60 percent of patients become unable to work. In this respect, ME/CFS causes great damage to the social system. The care for patients with chronic fatigue syndrome in Germany has so far been poorly positioned: The only care center in Berlin is the Charité Fatigue Center (CFC), but most sick patients have to be treated by their family doctor: "We often have waiting times at the CFC of two to three months and can only offer appointments for patients from Berlin/Brandenburg," said Scheibebogen, describing the situation at the Berlin Charité.