Long COVID: Slow progress for patients in Germany

If you want to see Max Pensel for treatment, you need a lot of patience: About 400 people are on the waiting list to see the doctor at the hospital and outpatient clinic for psychiatry and psychotherapy at the University Hospital Bonn. All of them are suffering the long-term effects of a coronavirus infection and want an appointment in the newly established clinic for long COVID or post COVID sufferers in the western German city as soon as possible.

Clinics like these are springing up all over Germany, but there are still not enough of them. Post COVID refers to health complaints more than 12 weeks after infection. Scientists speak of long COVID when people still have symptoms more than four weeks after infection.

Pensel's idea was to examine the psychological consequences of the disease more closely. He said: "People aged between 30 and 50 are particularly affected by these symptoms. These people are in the middle of their lives and of course, also have many responsibilities."

According to Germany's federal disease prevention and control agency, the Robert Koch Institute, 5.8% of those infected with the coronavirus were still on sick leave four weeks after testing positive. After three months, one in ten were still reporting symptoms such as fatigue and listlessness, shortness of breath, and problems with concentration and memory, commonly called brain fog.

Six months after their initial infection, one to two percent of patients develop the diagnostic criteria for chronic fatigue syndrome. 

"According to studies, significantly fewer patients report symptoms after several months or a year. But some continue to be desperate," Pensel said.

He cites the example of a patient who was infected at the beginning of the pandemic in early 2020. He was in a rehabilitation clinic and completely isolated, receiving a visitor only once a week. This man, according to Pensel, suffers to this day. Many patients, the doctor says, ask themselves "Am I to blame for infecting someone else? Did I do something bad?"

Hospitals also treat post-vaccination syndrome

Max Pensel is also seeing an increasing number of patients for an initial consultation who suffer from what is known as a post-vac syndrome: young, often athletic people who develop long-lasting symptoms after receiving a COVID vaccination. The topic has so far received little attention in the German public sphere.

One in four people who attend the post COVID clinic is currently in psychological therapy. For a further 40% of those affected, their medical history suggests a mental disorder. For many long COVID patients, it is not just climbing a flight of stairs that has suddenly become a Herculean task but also coming to terms with their limitations.

 "With psychotherapy, physiotherapy, and medications such as psychotropic drugs and painkillers, neurological and psychiatric symptoms can be well-managed," Pensel is convinced. He advocates: "The pandemic has been accompanied by an increase in mental illness. Germany needs an even broader range of services."

Focus on patients

It's an appeal that Pia Chowdhury would sign up for straight away. She is one of the few long COVID patients to have publicly spoken out about her illness early on. There are even fewer who are actively campaigning for those affected via local self-help groups or nationwide initiatives such as Long COVID Deutschland. Chowdhury is currently battling on two fronts: fighting against her own illness and fighting for the interests of other patients via the initiative: "Post COVID — recovered and yet not healthy" in Bonn, which she co-founded.

Chowdhury wants the German health system to finally orient itself toward long COVID patients — and not the other way around. So that she never again feels like she once did at a post COVID outpatient clinic, when she was dismissed by the doctors.

Long COVID: A reason for occupational disability

"When a long COVID patient, applies for a classification of severely disabled or lodges an application for a disability pension, it always depends on which case worker they happen to get," said Chowdhury, calling for a more uniform approach.

Germany, it seems, is slowly making progress: For the first time, insurance company Debeka has listed COVID as a reason for a recognized occupational disability, bringing with it the ability to claim a disability pension. "We had the first six cases in 2021, we are paying out for those," chief executive Thomas Brahm told the dpa German news agency.

But Pia Chowdhury wants more: she also sees herself as a pioneer for those affected by other diseases. "What sets us apart from the other organizations is that we originated from an acute illness and received media attention relatively quickly, whereas others fought for that without success for 10 years," she said.

Meanwhile, long COVID patients are seeing physiotherapists for treatment. Post COVID outpatient clinics are opening, if only in the cities. The long-term consequences of infection are being investigated in ever more studies. Two and a half years since the pandemic began, a lot has happened for those most affected.

But everything continues to depend on a person's regular doctor, Pia Chowdhury said: "That is the most important thing: to have a doctor who will take me seriously. Where I am not ridiculed or sent away as someone who is not actually sick. You always need a doctor who believes in long COVID."   

This article was originally written in German.

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