Her story is depressing: Milena suffers from chronic fatigue syndrome. It has nothing to do with Covid for her, but the little-researched disease is also considered a potential corona consequence. Today Milena can no longer get up, sit or eat alone.

Milena was a multifaceted and active young girl with big plans for the future. She spent a year abroad in the USA, wanted to go into medical research and campaigned for more measures to be taken against the climate crisis. This is what her parents tell the “Spiegel”, which visited the 19-year-old Austrian at home. Milena has not been able to speak normally for a long time, only limited communication is still possible via hand signals. She has been lying in bed in her permanently darkened room for more than 500 days. She is extremely sensitive to light and noise, wears a blindfold and earplugs. Standing up, sitting down, eating with a knife and fork, none of that works anymore.

Milena suffers from ME/CFS, which stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It is considered to be the result of viral infections and probably the most severe possible form of long-Covid. The disease has nothing to do with the mere fatigue, which may be annoying but not overly restrictive, which many corona patients talk about in the first few weeks after infection, as Carmen disc arch explains in an interview with FOCUS Online. She is one of the very few medical specialists in German-speaking countries who have specialized in ME/CFS.

“CFS patients are often seriously ill and can only lie down. In many cases, they also suffer from severe muscle pain or headaches and problems concentrating. The lightest household chores can be so demanding that they have severe symptoms afterwards for days or weeks.” For the doctor, this makes the illness one of the most serious there is. Also because the social environment often cannot understand the symptoms and trivialize them. “You can also lose your life without dying,” quotes the “Spiegel” Milena’s doctor, Michael Stingl.

The Berlin Charité takes a critical view of the term chronic fatigue syndrome. He is misleading. “CFS is much more than just fatigue or exhaustion. The best way to describe it is the feeling you get when you’re lying in bed with a bad flu. And then as a permanent condition, ”describes the doctor.

MS/CFS is considered little to no research. For decades, it was lumped together with – as we know today – organically distinct illnesses such as burnout and depression. “That’s why we still don’t know the exact connections to this day. However, we assume that CFS is an autoimmune disease that usually occurs after a viral infection and throws the fine control in the body out of kilter,” explains Scheibenbogen.

According to estimates, around 250,000 people in Germany are affected. How many have been added by Corona is so far unclear. According to the German Society for ME/CFS, a quarter of patients are so seriously ill that they can no longer leave the house. Some are bedridden. Women are at higher risk than men because of their hormones. Your immune system tends to be more active and at the same time more susceptible to glitches. In ME/CFS, elementary bodily functions are often affected. “As a result, many patients breathe too quickly, the heart beats too fast, and the blood flow to the muscles is impaired,” says Scheibenbogen.

Milena also suffers from tachycardia, dizziness and drowsiness as soon as she sits or stands. “These symptoms only disappear when lying down,” says the “Spiegel”. The cause of her symptoms seems to have been an infection in 2018. Since then, the then 15-year-old has suffered from flu-like symptoms, exhaustion, headaches and sore throats. Another infection in October 2020 exacerbates the situation, and the girl is even more sensitive to light and noise as a result. She hasn’t been able to leave her bed since November.

Treatment options for ME/CFS are limited. Because there is a lack of understanding of the mechanisms behind the disease, there is currently no targeted therapy. Medications can only relieve pain and sleep disturbances. Those affected sometimes have to recover for days from even the slightest exertion. While exercise can help with other states of exhaustion, such as after cancer, it can worsen symptoms in ME/CFS patients. It may be that there will be a serious collapse afterwards, warns Scheibenbogen. Then nothing works anymore. Doctors then speak of a so-called “crash”.

There are no clear biomarkers or diagnostic criteria for ME/CFS. Those who show correspondingly severe symptoms in the long term are considered to be affected – and if other causes have been ruled out. “A complex process in which different disciplines work together,” as infectiologist Uta Behrends explains to “Spiegel”. She heads the Chronic Fatigue Center for young people in Munich. In Berlin, Carmen Scheibenbogen directs the second facility of this kind in Germany, there is nothing more.

Anyone who continues to suffer from symptoms of fatigue after going through a corona infection does not need to worry too much at first, emphasizes Scheibenbogen. “Anyone who is still showing these symptoms after six months should have a check-up and, if no other organic reason is found, be examined for CFS.”

It is estimated that around 250,000 people in Germany suffer from chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME). Despite this, the disease and its symptoms are largely unknown. Contact points and information can be found at the Berlin Fatigue Center and the Federal Association of Chronic Fatigue Syndrome.

ME/CFS sufferers like Milena hope that Corona will make progress in research – even if her illness has nothing to do with Covid-19. However, due to the high number of long-Covid sufferers, attention to the disease has at least increased. There are now several treatment approaches with new drugs. In small studies, scientists report initial successes. “We have to get the pharmaceutical industry on board. Then there could be approved drugs in three years,” said Charité expert Scheibenbogen at the beginning of the year.

For example, improvements are expected from the active ingredient BC 007, which was actually developed to treat heart conditions. At the University Hospital Erlangen, a doctor cured the first patient from Long-Covid last summer. “It was like a giant miracle when we noticed that the patients were free of symptoms,” explained Bettina Hohberger, specialist in ophthalmology and molecular medicine, at the time in the FOCUS online interview. However, studies on the actual effectiveness and safety of the drug have not yet been carried out.