Corona could leave an army of chronic patients

It all started on Friday, March 13, with a sore throat. A colleague returned from the Tyrolean winter resort Ischl with the new coronavirus. Shortly after that, it turned out that 26-year-old Aleksandar Rih (real name known to the "Špigla" editorial office) also tested positive for covid-19.

"At first I thought: at least now you'll have to deal with it," says Rih. Even the doctors had no doubts - the body of a young and healthy person will not need long to fight the virus. They sent him for home treatment. However, after a few days he felt so bad that he had to call an ambulance. He spent a week in the hospital.

Rih officially recovered three months ago. There are antibodies to the virus in the blood. However, he goes through periods when he feels very bad. So far, not a single doctor has been able to explain to him why this is happening.

In addition to his sore throat, sometimes severe, sometimes moderately severe, and the pain appearing irregularly, his lungs are still affected. Those symptoms did not appear until he was discharged from the hospital. The pulmonologist prescribed him an inhaler (a pump for asthmatics) and advised him to be patient. Rih says the cortisone has helped him somewhat, but the cough and tightness in his lungs return as soon as he stops taking it.

He also has sudden muscle pains. Sometimes his whole left side goes numb, sometimes he feels so weak that he has to lie down immediately. In addition, as he told Špiglo, he has stomach pains and nausea, skin rashes and exhaustion.

Rih was on sick leave for 10 weeks. Meanwhile, he returned to his job as a real estate agent. But every now and then she has to cancel a meeting with a client because she just feels too tired. But mostly he tries to live normally. "I accepted to live with the pain," he says.

A very strange disease

Half a year since the pandemic began, doctors are studying an increasing number of patients like Rih who have officially recovered from the coronavirus, but are actually far from being healthy.

"Covid-19 is very unpredictable," Timothy Spector from King's College London told Spiegel. He has been monitoring the course of the disease in more than 200.000 patients infected with covid-19 for a long time with the help of a mobile application, which is part of a large research project. "I'm a rheumatologist by profession, so I'm used to strange diseases. However, covid-19 is the strangest disease I know of."

Approximately, one in ten patients suffers from unexplained symptoms for more than a month or even two after the illness. The most common symptoms are exhaustion, headache, loss of sense of smell, difficulty breathing, dizziness, diarrhea and skin rashes. "And some of our patients still have fever after three months," says Spektor.

One in ten people infected with the coronavirus suffer from fatigue, muscle pain or neurological problems for weeks after overcoming the infection. What are the long-term consequences of the virus?

In some patients, severe damage to the lungs, heart and nervous system was found, which is also worrying. The disease can cause cardiac arrhythmias or even trigger diabetes mellitus. Some patients have problems with concentration and memory disorders, similar to dementia. Even younger people can be affected. More than a thousand children around the world got the so-called multisystem inflammatory syndrome related to infection with the SARS-CoV-2 virus, which can lead to myocarditis (inflammation of the heart muscle) and the cessation of cardiac activity.

Nothing can be done

"Many patients say that they were different people before the coronavirus," says Swiss heart surgeon Paul Vaught. Doctors now fear that the pandemic will leave behind an army of chronic patients. Some hospitals in Germany are already starting to set up outpatient clinics for the care of people who have survived covid-19

"People think: Either you're going to die, or you're going to get better," says British physician Helen Salisbury. "But it doesn't work that way."

For weeks, there was only talk about intensive care units and artificial ventilation. "But now there are all these people who may be sick for a long time."

Salisbury is treating several patients who have been infected with the SARS-CoV-2 virus and continue to suffer from exhaustion and sudden fever or coughing fits and who become short of breath easily. "All the tests are within normal limits," he says. "And there's no therapy I can offer them." Many of these chronically ill people are young -- and they're desperate. "But I can't do anything for them, except listen to them," Salisbury told Spiegel.

It remains a mystery to experts why the symptoms are so persistent and strong, even after patients have supposedly recovered from the disease. Doctors suspect that this happens because of the disturbances in the immune system caused by the infection. It is also possible that the virus has lodged itself somewhere in the body and attacks it again and again.

Prolonged weakness could also be the result of a lack of oxygen during the acute phase of the disease. Especially younger patients with covid-19 do not notice that they are weak for a long time.

Like other viruses

Doctors see a parallel with another disease caused by the corona virus. After the SARS pandemic in 2003, doctors noticed the appearance of a large number of chronic patients, for example in Toronto, Canada, where the largest epidemic of this virus outside Asia broke out. "When I heard there were patients who were sick and recovered from the SARS-CoV-2 virus, I thought, 'That's what I've been waiting for,'" says Harvey Moldofsky, a professor emeritus at the University of Toronto who studies sleep and pain processes.

This doctor specialized in unusual diseases at the beginning of his career. So he was asked to step in and help after the SARS pandemic subsided in 2003. "There was a group of 50 people who survived SARS, but even though they went through recovery, they couldn't go back to work at full capacity," he said. is Moldavian "Spiglu".

He spoke to 22 of those 50 patients in detail, and the stories he heard sounded similar. "During the first year after infection, everyone was tired, weak, had muscle pain, trouble sleeping and couldn't think clearly," Moldofsky explains.

All these phenomena are known to experts. Patients suffering from chronic fatigue syndrome also complain of pain in the muscles, head and neck. Many also mention a "foggy brain" that makes them unable to concentrate.

A number of viruses are thought to cause chronic fatigue syndrome. Some of them are the influenza virus and the so-called Epstein-Barr virus, which causes mononucleosis. Researchers now suspect that the pain has a strange origin, in fact, an autoimmune reaction triggered by a viral infection, which can affect the autonomic nervous system. Other symptoms include heart palpitations, increased susceptibility to infections, and sleep disturbances.

Neurological problems

Karmen Scheibenbogen, head of the outpatient clinic for adult patients with immunodeficiency at the Charite University Clinic in Berlin, is one of several German experts on chronic fatigue syndrome. Currently, many who have been infected with covid-19 are contacting doctors about the strange symptoms they are experiencing.

But for now she has to disappoint them too. A reliable diagnosis can only be given six months after infection. "By then, there's a good chance everything will settle down on its own," says Dr. Scheibenbogen. Only those symptoms that last longer than six months are considered chronic. And even then, there are several treatment options.

Scheibenbogen advises that patients take good care of their bodies. "You should definitely avoid overexertion or playing sports that aggravate the symptoms. That could make things worse," he explains.

Unaware of the problem

In addition to chronic fatigue, patients suffering from covid-19 can also suffer from a number of neurological complications. "The neurology research community has been slow to become aware of the problem," says Benedict Michael, a clinical researcher and neurologist at the University of Liverpool's Health Protection Research Unit. He says that 20-30 percent of patients who require hospitalization develop some neurological complications.

At the end of June, Michael and several colleagues published a study on this topic in the medical journal "The Lancet Psychiatry". They examined 125 patients who developed neurological problems as a result of covid-19. About 60 percent of the participants, mostly elderly people, had a stroke after being infected. Close to a third of them showed signs of other cognitive or psychiatric changes, including a significant number of younger patients.

A total of 8 out of 125 examined patients developed psychoses related to coronavirus infection. Slightly less than 5% of patients developed dementia. "Many young people are still living in the pandemic and don't even think that there is a possible risk that they too have a problem," warns Michael.

In some cases, it is easy to explain what caused the brain damage. Strokes can happen because covid-19 often causes blood clots. It is also known that this coronavirus can sometimes lead to encephalitis.

In many other cases, however, the cause of the complication remains unclear. "It's very possible that it's an immune reaction," says Michael. For some, it can be a consequence of stress, or lack of oxygen, or all together.

Maybe the problems will go away on their own

For many patients, there is still hope that neurological and psychological problems, as well as other persistent complications, such as exhaustion, will significantly decrease or disappear on their own.

The case of the doctor Stefani di Giorgio from Kent in Great Britain gives hope. This 44-year-old mother of two children was most likely infected by one of the patients. Di Giorgio did not belong to high-risk patients. The reason for concern could be that she had mild asthma and was slightly overweight. Fifteen days after the infection, her temperature dropped.

However, many of the other symptoms remained. The worst was the dizziness, he says. "I felt like the floor suddenly started moving," she said, adding that she even fell a few times due to dizziness. "Just in case, I crawled up the stairs and showered sitting down."

She was also terribly tired. At the slightest effort, her heart began to pound. Her temperature also returned in waves.

"At first I thought I was crazy," says Di Giorgio. "And then I saw that there were patients with the same problems. And when I talked online with many other people, I realized that I'm not the only one suffering."

At the moment, he can only work a couple of days a week. After that she was completely exhausted. It also seems that her brain is not working properly. "I can't think straight," he explains. "Let's say when I'm cooking, I happen to put the eggshells in the bowl and throw the eggs in the bucket."

If he spends one day working in the garden, he spends the next two days in bed. "When I push myself, the disease comes back."

But in the last few days, after three months of suffering, she finally seems to be getting better. "I understand that this might scare people," says the doctor.

"That's why it's important that they're not left to fend for themselves."