Exhausted and without energy: A sufferer tells how Long Covid is costing her her youth
How do you deal with children who can’t go to school because of Long Covid? The federal government is now informing the schools with concrete courses of action. Returning doesn’t always work – like with Melissa.
Melissa has been suffering from Long Covid, a disease that presents with many symptoms, for three years.
Image: Andrea Tina Stalder
The coronavirus infected then 14-year-old Melissa Früh in November 2021. The infection triggers the usual Covid symptoms, but some do not subside even after quarantine. That was three years ago and Melissa is still suffering from the consequences of the illness. Severe exhaustion, lack of energy – climbing stairs is difficult, for example – headaches, constant dizziness, a very high need for sleep of 12 to 16 hours and hair loss are Melissa’s symptoms. In her room she talks about her ordeal for a whole hour, almost without interruption.
Because things aren’t getting better, the family doctor sends the girl to the hospital in Münsterlingen, where she is diagnosed with post-viral fatigue syndrome in January 2022. “We actually talked about Long Covid, but the doctor didn’t want to describe my illness as such,” says Melissa.
School is out of the question
The Thurgau girl is still not recovering, is exhausted, has no energy to get up, and school is out of the question. First she is in the hospital, then in a day clinic. “I lacked and still lack energy, even though I have ADHD,” she says. Melissa talks herself into a rage, saying that despite her Long Covid problems she had to go to school full-time. “I was on the verge of collapse.” She describes the therapist as bad and says that she said that Long Covid does not exist in children.
“She was fourteen at the time, which was when she was cut off from the family. And she was locked up in her own four walls,” says the mother. Since the daughter has severe depression after the corona disease, the therapist blamed everything on the depression, not on Long Covid. “You have to go back to school,” they said. She is changing the day clinic, but has to leave there in January 2023.
The situation is discussed with the family and experts at a round table. “One participant said that if I don’t attend school, a danger report will be made to Kesb. Then the police will pick you up at home. A lot of pressure,” says Melissa. She goes to school 100 percent for one week, then stays home sick.
She suffers a breakdown and has suicidal thoughts for the first time. The odyssey continues and leads to the psychiatric hospital in Littenheid. She feels better mentally there. She praises the therapists. Nevertheless, the attempt to reintegrate them into the regular class does not work. She lacks energy.
Melissa spends a lot of time on the sofa or in bed. Melissa is constantly tired and exhausted.
Image: Andrea Tina Stalder
Meanwhile, Melissa’s school days are coming to an end. Melissa speaks of a great liberation. But she has to abandon her career choice in a training workshop because of a crash – she has only been at home for two weeks.
Melissa’s health situation worsened when she and the whole family were infected with Corona again last fall. This also applies to the younger sister, who also suffers from Long Covid.
Sister also has Long Covid
She also hasn’t taken part in normal school lessons for a long time. She goes to school twice a week for twenty minutes and a teacher comes by twice. This is possible because, unlike her older sister, she received an official Long Covid diagnosis and because the canton of Thurgau is the only canton that offers Long Covid children the right to paid individual lessons.
Two children with Long Covid, the need is great in the family, which is why they are exchanging ideas with around 300 other affected families in the “Long Covid Kids Switzerland” group. This organization has now published a media release together with “#ProtectThe Kids” that is intended to provide those affected with more support. Especially in schools. “In general, it takes far too long for children and young people who can hardly or no longer attend face-to-face classes due to Long Covid to receive some academic support at home,” says President Claudia Schumm, who herself has a son who is attending Suffered from Long Covid but is now healthy again.
In order to solve the school problems, the Federal Office of Public Health (BAG) has developed an information sheet aimed at school management and teachers. The information sheet offers helpful, concrete approaches to action, says Schumm. It would be good if the information sheet had been distributed by the education directors (EDK) at the beginning of the school year, but now it will probably only come to schools at Christmas. It would have been urgent “because most schools don’t know about Long Covid and massively underestimate the long-term consequences of virus infections.”
Long Covid is not sufficiently recognized and taken seriously, says mother Gabriela Früh. The affected families are often left to fend for themselves for months and years, adds Schumm. Parents would have to reduce their workloads or give up their jobs. The medical care for children and young people with Long Covid and myalgic encephalomyelitis or chronic fatigue syndrome – the most severe form of Long Covid – is completely inadequate. In addition, these patients are referred to psychiatric care far too quickly.
Consultation hours for Long Covid children at the Eastern Switzerland Children’s Hospital
But she is aware that Long Covid is a new disease and that doctors and therapists still have to learn, says Früh. In fact, diagnosing Long Covid is extremely difficult. “Chronic tiredness and exhaustion are usually the main focus for children, too,” say Anita Niederer-Loher and Christian Kahlert from the Eastern Switzerland Children’s Hospital, who offer consultations for children with Long Covid there. Exhaustion affects everyday activities and school performance. In addition, children and adolescents also experience many other non-specific symptoms such as headaches, dizziness and muscle pain, the pediatricians explain.
And there are many more different and often non-specific symptoms. That’s why diagnosing children is also complex. In addition, laboratory values or examinations were often missing. “Long Covid is a diagnosis of exclusion, which means that other possible causes of the symptoms must be ruled out in any case,” says Niederer-Loher. Additional special examinations are often required, for example in the laboratory, in cardiology, pulmonology and neurology.
There are various hypotheses that Long Covid can also be attributed to physical mechanisms, says Kahlert. “But it is also the case in children that it is a multifactorial event and no scientifically clarified cause has yet been identified.” This is despite the fact that researchers at the University of Zurich recently identified a pattern in the blood proteins in order to better diagnose Long Covid and perhaps treat it more specifically in the future.
Because there is no uniform definition of this disease, it is difficult to obtain reliable figures on its frequency. “Even before the Covid pandemic, we regularly looked after children with the symptoms described for Long Covid in our consultation hours. These symptoms can be triggered by various viral infections, for example the Epstein-Barr virus.
In the meantime, practically all children have had Covid at least once, and overall there are only a few children affected by Long Covid. Many of those affected fell ill during the first phase of the pandemic. However, Long Covid Kids writes that there are also cases after the third infection. The BAG has now Treatment recommendations published on post-Covid-19 disease.
Regarding the accusation that children are pushed too quickly into the psychiatric corner, they say that the psychological aspect is important for children with Long Covid. But this should not be the only approach. “In the case of a multifactorial disease, it is always crucial that stressful situations are recognized and taken seriously as possible symptom aggravators.” Psychological support is a very important factor. Pediatricians and family doctors have various options for further training on the topic. You should therefore be able to recognize the symptoms and assign the affected children and young people to special consultation hours.
For now, Melissa wants to relax completely
Melissa now wants to relax completely. Because of her depression, not because of Long Covid, so-called integration measures are possible via the IV. For now, she only wants to do one activity per day, for example physical therapy, crocheting or line dancing. She has been doing the latter since 2015, and the dance keeps her alive, she says. “We hope that it will get better, but we are not sure whether it will work,” says the mother. For now, mother and daughter want to enjoy the little things – for example, “shopping”.
There is no patent recipe for successful treatment. Every situation is individual and requires different priorities. “In any case, it takes a lot of time and patience,” say the infectiologists. All those affected would have to engage in a multidisciplinary approach, including psychological support, in order to achieve long-term improvement. “In our experience, the prognosis for children and young people is good overall; most of them gradually manage to resume their activities and lead a healthy and active life,” say Niederer-Loher and Kahlert.
