Post-Covid and Post-Vac: Is it okay to make a song about an incurable disease?

There are more than 600,000 of them. And they want their lives back the way they once were. That's the message of a line from the song "What We Want." Two women wrote the lyrics: Nelli, 50, and Franzi, 34. The two aim to raise awareness of a disease called ME/CFS . It occurs after infections and has become more pronounced since the coronavirus pandemic—in patients post-COVID , but also in post-vaccine patients .

ME/CFS is currently incurable. It's a syndrome with many possible symptoms. It should now receive the attention it deserves, but isn't receiving in politics. "The government has so far provided hardly any funding for ME/CFS research," complain Nelli and Franzi, who want to keep their first names. To protect themselves from stigmatization and reprisals by authorities, they say. This, in turn, says a lot about how society deals with this illness.

Franzi and Nelli: Franzi was diagnosed with ME/CFS in 2020, has barely been able to leave her bed for three years, and has to stay at home. She was forced to drop out of college. In September, Franzi wrote a poem that caught Nelli's attention. The illness derailed Nelli's daughter in 2022, including her academic career. At least 80,000 children in Germany are like her.

Terminally ill – that's a devastating diagnosis. For ME/CFS, also known as myalgic encephalomyelitis/chronic fatigue syndrome, the prognosis could improve. Research into this has been ongoing for a long time, for example at the Charité Hospital in Berlin. Among other things, they are pursuing a modern, promising strategy : A drug already developed for other diseases is being tested for its effectiveness in certain forms of ME/CFS.

Scientists, for example, are investigating whether there are already medications that could work for postural tachycardia syndrome, which many ME/CFS sufferers also suffer from. Abbreviated as POTS, it causes, among other things, dizziness and an increased heart rate when standing up. Small fiber neuropathy, which causes severe burning, pulling, or tingling in the arms and legs, is also frequently observed. All patients have what is known as exercise intolerance: Even the slightest exertion leads to a crash. Symptoms become more severe, and physical and mental health deteriorates.

Those affected don't want to accept it. They want to live, as the song says: "No longer lying behind closed windows and doors. They want to throw open the windows and scream: Here I am!" This is how Dagmar Lauschke sings in the video on YouTube. A professional singer, she performs the professionally composed song, produced by Hamburg musician Karsten Deutschmann. "My impression," says the 49-year-old, "was that those affected have been left behind by the desire of many to return to business as usual as quickly as possible after the pandemic."

People with CFS are often severely exhausted by even the smallest things and are sensitive to noises, for example. Mariana Friedrich/dpa

The German Society for ME/CFS, however, stated at the end of last year that the Federal Ministry of Research's interest is growing. At that time, the ministry provided 15 million euros for six projects investigating the mechanisms of the disease. However, according to estimates, this sum is offset by economic losses and costs for the healthcare system of well over seven billion euros annually. The suffering of the patients cannot be quantified in any currency.

The situation is unlikely to get any easier. In the US, President Donald Trump has severely restricted government funding for research projects on post-COVID, post-vaccine, and their consequences. In Germany, the research portfolio was transferred from the FDP to Dorothee Bär of the CSU . The new federal government has dedicated two succinct sentences to the topic in its coalition agreement: "People suffering from myalgic encephalomyelitis/chronic fatigue syndrome, long-term and post-COVID, and post-vaccine infections need our continued support. We are strengthening care and research to this end."

Moritz Hoffmann comes from Bavaria, the state of the CSU. He is 13 years old and has been suffering from ME/CFS for more than two years, a moderate one, according to his diagnosis. In everyday life, this means he is unable to pursue hobbies or spontaneously meet up with peers. The boy receives only eight hours of online instruction per week.

Moritz Hoffmann appears in the video. He was one of about 20 singers. They were all at home, some in bed, behind tightly closed windows and doors. They were digitally combined into a choir, which can be heard in the background of the video. The young man says: "I wish that we would finally be exposed to fewer prejudices, that PEM would finally be understood."

PEM stands for Post-External Malaise, a condition that affects the body's ability to cope with stress. Doctors often fail to recognize this, Franzi and Nelli complain, and PEM is often misinterpreted as a psychosomatic illness. "This leads to people with ME/CFS receiving little medical help and are often stigmatized." There are currently no recognized therapies. "Treatments are usually self-experimented and self-funded. Often unsuccessful."