Simone Ravera rolls up her pants, takes off her shoes and socks and steps carefully into the cool water of the Baltic Sea.
The 50-year-old rheumatology nurse is slowly finding her feet again after being knocked down with COVID-19 last fall. She appears to be recovering and relapses four months later with severe fatigue and “brain fog”.
“The symptoms were almost as bad as they were in the beginning,” said Ravera.
Just before desperation, she found a clinic that specializes in treating people with so-called post-COVID-19 or long-term COVID-19 symptoms.
The clinic is located in Heiligendamm, a seaside resort in northern Germany that has been popular since the late 18th century. She specializes in helping people with lung diseases such as asthma, chronic bronchitis and cancer.
According to medical director Dr. Joerdis Frommhold has developed into an important rehabilitation center for COVID-19 patients in the past year, in which 600 people from all over Germany are treated.
Some of her patients were near death and now need to relearn how to breathe properly, regain stamina, and overcome a variety of neurological problems associated with serious illness.
Frommhold also treats a second group of patients who developed mild to moderate COVID-19 symptoms and who only spent a short time in hospital, if at all.
“These patients get rebound symptoms after about one to four months,” said Frommhold.
Most are between 18 and 50 years old and have no pre-existing conditions, she said. “They are the ones who are usually never sick.”
After recovering from COVID-19, these patients are suddenly out of breath, depressed, and struggling to focus, Frommhold said. Some suffer from symptoms that are similar to those of dementia.
A former dialysis nurse found her kitchen flooded because she forgot to turn off the tap. “Others cannot do homework with their children because they do not understand the questions themselves,” said Frommhold.
Doctors don’t always take your symptoms seriously.
Despite hair loss, joint and muscle pain, irregular blood pressure, and dizziness, routine test results for such patients are usually back to normal.
“You seem young, dynamic and powerful, but then you can no longer do what you used to do,” said Frommhold.
The clinic’s therapists initially concentrate on stabilizing the patient’s breathing. Then they work on restoring endurance and motor coordination with the help of occupational therapy and posture training. Cognitive therapy and psychological support are also part of the program.
Similar clinics for “long-distance drivers” were set up worldwide last year, including in the USA. In Germany, such treatment is increasingly offered by the nationwide network of more than 1,000 medical rehabilitation centers, 50 of which specialize in lung diseases.
“This does not yet exist in many other countries,” said Frommhold.
It is unclear how many people have long-term COVID-19 illnesses, partly because the illness is not yet clearly defined. Scientists are still trying to understand what’s behind the multitude of symptoms patients report.
“No two patients have the same experience and it varies within patients,” said Elizabeth Murray, professor of e-health and primary care at University College London.
“The symptoms you are experiencing this week are not necessarily an indication of the symptoms you would experience next week,” said Murray, a former general practitioner. “It makes it difficult for everyone; that makes it very, very difficult for the patient. “
The UK’s Office for National Statistics said a survey of 9,063 respondents who tested positive for COVID-19 found that more than 20% reported some symptoms persist after five weeks. For about 10% of those who included fatigue, similar numbers reported headache or loss of taste and smell.
According to a review by Johns Hopkins University, more than 140 million coronavirus infections have been confirmed worldwide to date, meaning that even a small percentage of long-term COVID-19 sufferers suggests that millions could be affected.
“That’s a lot of extra people to be treated, and no health system has a lot of spare capacity,” said Murray. She added that the economic impact of so many people leaving the world of work could be devastating, especially since many of those affected are women who also bear a disproportionate burden at home.
Murray is developing a digital program funded by the UK’s National Institute for Health Research to manage long-term COVID-19 symptoms and reach more patients faster than traditional rehab facilities to ensure they do not abandon the medical system feel.
Frommhold said a similar program could help Germany cope with the expected surge in long-term COVID-19 patients, but suggested that greater acceptance of the disease will also be needed for those who do not fully recover.
“In my opinion, we first need a campaign like the one for HIV awareness that explains how there are different paths even after recovering from COVID,” she said.
If patients, their families, and employers understand that they are now suffering from a chronic condition, it could prevent long-distance drivers from falling into a spiral of depression and anxiety, Frommhold said.
Heike Risch, a 51-year-old kindergarten teacher from the eastern city of Cottbus, was barely able to walk without help after leaving the hospital after recovering from COVID-19.
“I felt like I would be 30 years old in a very short time,” she said.
In the clinic, Risch couldn’t balance a table tennis ball on a racket and walk backwards. She still can’t read a clock properly.
“You no longer trust your own body. You no longer trust your own head, ”said Risch.
Still, she hopes to be able to go back to work one day. “I like working with children, but I need to be able to concentrate. I need to be able to do two things at once,” she said.
Ravera, the nurse, says she has come a long way thanks to therapy in Heiligendamm and is happy to have support from friends and family.
But Ravera doubts that she will spend three weekends again in the hospital where she worked in Bavaria.
“You don’t know when you’ll be fine. The disease comes in waves, “she said.
Instead, Ravera is considering using what she learned in rehab to help others who are struggling to breathe properly again after COVID-19.
“It’s a little journey into the unknown,” she said.
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