“Before I had long COVID, I didn't have to use a wheelchair,” says 12-year-old Cerys. “And now I do, almost all the time. I can't go to school. You lose your friends.”
Cerys is part of the Long COVID Kids Choir, run by Dutch musician Merel van der Knoop. Members are between 10 and 16 years old, and based in the Netherlands (Kingdom of the), the United Kingdom and the United States of America.
Due to the physical symptoms they experience – which can include breathlessness, dizziness, brain fog, anxiety and fatigue – many have had to drop out of full-time education and commonly miss out on social connections.
Now, the young people meet online to sing simple, fun songs together, practice breathing exercises, and support each other in an understanding environment. Together, they wrote a powerful song that expresses their experiences and advocates for young people living with long COVID (sometimes referred to as post-COVID-19 condition).
A pause on enjoying life
In 2021 choir leader Merel caught COVID-19. Three years later, she is still living with long COVID. Due to cardiovascular conditions triggered by the infection, she can no longer perform as a musician, and has to pace and limit her teaching work or face debilitating crashes in energy.
“I started running the Long COVID Kids Choir because I noticed that there wasn't much help for all the children who are also living with the condition. I wanted to provide a safe space where they could come together,” explains Merel.
While researchers have not yet found biomarkers in the blood to allow for easy diagnosis of long COVID, doctors can diagnose the condition based on symptoms and by ruling out other potential causes.
Many of the Choir members have been living with long COVID since before the Choir started in 2022. Most were fit and healthy before they caught COVID-19, enjoying active hobbies and busy social lives.
“Our weekly Choir meeting is one of the only times I can really enjoy myself,” says Clara, who is 10. “Otherwise I spend my weekends mainly just having to rest.”
Caitlin, 13 years old, agrees: “Long COVID changes everything, really. It puts a pause on enjoying your life.”
However, Caitlin offers a message of solidarity to others in her age group in a similar situation: “To any child with long COVID, you're not alone. There are hundreds, probably thousands of kids out there that are feeling the exact same way as you and might be confused about why everything's just come to a stop.”
Even though there are now fewer severe outcomes on average from COVID-19 than during the first wave of the pandemic in 2020, mild, moderate and severe SARS-CoV-2 infections can still trigger long-lasting aftereffects in both adults and children.
It has been estimated that at least 10–20% of people will go on to experience long COVID with chronic symptoms. The risk of these symptoms also rises with reinfection. For the majority who experience chronic symptoms, fatigue or brain fog are the most common. These usually pass within a few months, but an unlucky few will be hit more seriously and for far longer.
Long COVID Kids supports some young people who have been unwell for nearly 5 years, with symptoms ranging from extreme fatigue and cognitive dysfunction to autonomic nervous system disruption and gastrointestinal issues.
“We've had new members joining sessions recently, and that makes me both happy and sad,” says Merel. “I’d rather they didn’t need the Choir, but I’m very happy that they found us.”
A safe space
In the Choir, the young people practice breathing exercises, mindfulness and vocal exercises, and enjoy a lot of singing and chatting as well. The breathing exercises are designed to make them more aware of their bodies, which is crucial for learning to pace activities and manage symptoms. They can also use the calming techniques to support their mental health and well-being in their everyday lives.
Managing energy levels through pacing activities and taking breaks can be a difficult balance. Throughout the session, Merel asks them to assess their energy levels and offers them a chance to rest when they need to.
In addition to her years of teaching singing to children, her experience leading choirs and her dedication to vocal and mental health, Merel took part in the English National Opera’s Breathe programme, an evidence-based course that supports people with long COVID who are suffering from breathlessness and anxiety.
“Due to long COVID, our breathing sometimes isn't right and it's difficult for us to sing. It's brilliant that Merel understands that,” says Caitlin.
“It makes me feel calmer, and I think my breathing has probably improved with the breathing exercises, especially when I get overwhelmed,” adds Cerys.
Sharing through song
“Sometimes I feel like I'm caught in a brain fog.”
“We feel lost.”
“Why don't I feel like a normal child like everybody else?”
These lyrics from the song the Choir members wrote express their confusion and frustration with a condition that is still poorly understood. Merel worked with the Choir and with young musician Frankie Morland to help turn their feelings into a powerful, catchy tune called “Rollercoaster”.
During their weekly sessions, they also recorded a video to help spread their message. To reach those who are best placed to increase recognition of the condition, they shared the video with hundreds of delegates at the annual conference of the School and Public Health Nurses Association (SAPHNA), as part of a session called “Keeping young people up front and centre”.
“We need more research and more recognition,” urges Merel. “That’s why it's important that we listen to the experiences of young people living with long COVID, because it's life-changing – it has an impact on families, but also beyond, because children can't participate in society. That's something that we need to keep drawing attention to.”
Calling for more research
Since 2022, WHO/Europe has worked with its partner Long COVID Europe, an umbrella group connected to several long COVID advocacy organizations, to call on governments and health stakeholders to support more research into this complex condition.
Parents or caregivers who suspect their child may have symptoms of long COVID should consult a medical practitioner.