Devastating impact of Long COVID on children revealed in MDX exhibition

Middlesex University academics interviewed children to find out their experiences of the debilitating illness

Children living with Long COVID have spoken about the devastating impact it can have on their lives.

Disabling and chronic symptoms mean many children spend their days resting or sleeping, unable to lead a normal life.

Working with the Long COVID Kids charity, academics from Middlesex University interviewed children and asked them to draw a picture or provide an image to describe their life before and after developing the illness. They developed an exhibition which took place at Middlesex University and is now available online.

Mia, 12, described an image of her on the beach and recalled learning to become a lifeguard and swimming against the current before Long COVID, said: “Now I can’t even have enough energy to get in and out of a pool, let alone swim or do anything.

“Most days I have to either a really long sleep or have to have a couple of naps during the day because I don’t have the energy to stay awake.

“Tired, cold and probably in pain, it feels like even though you’re doing things that people said helps, they don’t. And it sometimes feels like it won’t go away and you’ll have to live like this forever.”

Henry, 14, who drew a roadrunner to show his emotions before Long COVID and a sloth to represent his state afterwards, said: “It’s an animal that historically doesn’t move much, doesn’t have a lot of energy and sleeps all the time.

“I feel I just impersonate the sloth these days.”

Tom, 14, who described an image of a dark tunnel, said: “It’s quite a dark, long journey to the light at the end of the tunnel.

“It’s (Long COVID) completely limited my life, so I can only do one thing a day because that tires me out. I have to get into bed at four or five o’clock because with Long COVID you don’t know when you’re going to recover.”

Long COVID is the term for ongoing symptoms and clinical signs from a COVID-19 infection which remain unresolved for four weeks or longer. One study by the National Institute for Health and Care Research (NIHR) found that 14% of children could develop Long COVID, the equivalent of two to four children in each classroom.

Some studies suggest symptoms may last for three to six months in children but it can be much longer as children in this research experienced.

Symptoms can include fatigue, dizziness, rashes, brain fog, stomach pain, joint or muscle swelling or pain, headaches, chest pain, sore throat and eyes, sickness or nausea, and mood changes.

Early studies indicate female children are more susceptible to Long COVID along with those who have suffered from conditions such as asthma, eczema, hay fever, post viral fatigue or have allergies to cats and dogs.

Dr Camille Alexis-Garsee, an Associate Professor of Health Psychology at Middlesex University who co-led the research, said: “Life has drastically changed for some of these children. These persistent symptoms have impacted children’s lives as they are unable to concentrate and engage in physical activity for long periods of time.

“For all of these children there have been negative impacts on their education as most are unable to attend full days at school. Many found it difficult getting a diagnosis and being listened to by medical professionals, and they also experienced feelings of loneliness.”

Dr Nicola Payne, an Associate Professor in Psychology at MDX who co-led the project, said: “Alongside the physical symptoms, they get this terrible brain fog and find it very difficult to concentrate.

"Long COVID has negatively impacted many areas of these children's lives.

“Much of their time is spent having lots of naps and resting. It’s changed their entire lives and that of their families, with many parents giving up work or reducing hours due to caring responsibilities.

“Despite not knowing when life will return to normal, the children still remain remarkably resilient and optimistic.”

Sammie McFarland, the founder of Long Covid Kids, said: "Long Covid Kids were honoured to participate in this important research project on Long Covid in children with The University of Middlesex. By providing children with the opportunity to express their experiences creatively; and contribute to the study we can all improve our understanding of this complex health condition and ultimately improve outcomes for children and families affected by Long Covid."

The exhibition - which can now be viewed online here - aims to raise awareness of Long COVID in children and the need for greater understanding and support.

Dr Alexis-Garsee and Dr Payne plan to produce a full research paper later this year.

Find out more information about Long COVID kids charity.

Photo by Michał Parzuchowski on Unsplash.