Long COVID is a conundrum. I am told it is challenging the way we understand and research diseases. I do not have experience in research, but I do have an in-depth understanding of living with long COVID.
Not just from my experience or that of my daughter, but from the more than 10 000 members of the Long COVID Kids charity support group.
I am told that I am an expert by experience, but in reality, I am a mother doing my best to encourage change and challenge thinking in the hope that it will make a difference.
Twenty-four months after infection, my 16-year-old daughter and I need hope. She has spent an eighth of her life living with the chronic and disabling symptoms of long COVID, a preventable disease. She is not unique. Our story is representative of a growing population of children living with long COVID.
According to the Office of National Statistics (ONS) prevalence estimates, there are currently 119 000 children and young people living with long COVID; 21 000 of whom are still experiencing symptoms 12 months after their initial infection (ONS, 2022a). The ONS (2022)COVID-19 Schools Infection Survey (2022b) found that since March 2020, 1.0% of primary school-aged pupils and 2.7% of secondary school-aged pupils met the criteria for having experienced long COVID affecting daily life for 12 weeks or more. These numbers are substantial: 2.7% of secondary pupils equates to 1 in 37, or 27 students in a secondary school of 1000. Worryingly, these statistics do not yet account for the Omicron wave, during which time a large proportion of children in this age group was exposed and infected.
Our house is riddled with the signs of long COVID; dishes in the sink, piles of laundry on the floor, equipment and aids, constant reminders of how symptoms impact our daily life.
Our experience of acute COVID-19 was unremarkable. Mild infection, non-hospitalised, no medical help. Five weeks after infection, we developed the symptoms that we now know as long COVID (Long Covid Kids, 2022a).
We spent 8 months in bed managing uncharted, unpredictable, persistent relapsing and remitting symptoms. We have learnt to adapt and modify our lives, and while there has been some improvement, we are not the people we were. Today marks 2 years since we contracted ‘mild’ Sars-CoV-2. My daughter is unable to return to school and now has a home tutor, and I have had to take a break from my career in the hope it will allow me to recover.
Our knowledge of the mechanisms and pathophysiology of long COVID has improved and we are now on our way to understanding why many people continue to suffer after acute infection. Oxford has a drug trial underway, too. But 2 years on, we have no treatment and no cure.
My basic understanding of research is that you take a group of people, focus on the common issues, and ignore the extremities.
From observing members in our support services over the last 2 years, I believe the evidence is clear that we need to include the extremities.
‘We may not yet have the understanding we want or the written evidence policymakers seek, but these children do not have the time to wait for answers. This is their childhood. They only get one and they are already missing important milestones.’
We cannot ignore the growing number of children who have lost their mobility, have new-onset neuropsychiatric symptoms, tics, or those who rely on a feeding tube to keep them alive. A vast array of symptoms has been widely reported. Yes, fatigue and headaches are common, but so too are pain, cognitive decline, rashes and many more.
We need biomedical research, which has so far been neglected. We seem to have been stuck debating prevalence. When we move beyond this, we can learn. Without research, our children are left in pain and told they are anxious. Huge swathes of children have been exposed to infection. We need to learn fast and provide support and treatment.
Long Covid Kids is calling for more co-production of research, involving people with lived experience from the conception. We are asking clinicians to be more curious, to look with fresh eyes and challenge bias.
Our children deserve the same care and understanding as any sick child (or adult), and yet their experience is often gaslighting, obstacles and challenges.
Much like my house, long COVID is not tidy, and the research cannot be tidy either, not if we are to capture the nuances and extremities that make up the condition.
We may not yet have the understanding we want or the written evidence policymakers seek, but these children do not have the time to wait for answers. This is their childhood. They only get one and they are already missing important milestones.
Long COVID has an impact on education, relationships and the ability to participate in usual daily activity. There is also a wider impact on the family, finances and mental health.
The chronic health that our children are living with will contribute to make the persons our children become. The way they are treated by professionals who care for them will shape their thoughts and decision-making. Their experiences will play a part in how our children approach their condition, and hopefully their recovery.
While we wait for research and understanding, the Long Covid Kids team has developed a support guide: ‘Shining a light on long COVID in children. A Guide to Recognition. Support. Recovery.’ It aims to improve identification in the community, ensure early intervention and improve the outcome for families, children and young people living with long COVID (Long Covid Kids, 2022b).
In keeping with the ever-changing research landscape, our digital guide is a practical and current ‘living document’ collated for children and young people living with long COVID and the families and professionals who support them. The guide will continue to evolve alongside the global efforts of researchers and clinicians, who are working very hard to unpick this new condition, and the unwavering support of our Long Covid Kids Champions.
Nobody is alone. Long COVID Kids has been connecting and supporting families, children and young people living with long COVID since October 2020. To find out more about our support services, please visit us online at: www.longcovidkids.org
We hope our collective knowledge will help identify cases in the community, signpost to services, and support all those navigating this novel condition with renewed reassurance that you are not alone and you can believe the children in your care.
Made with love by families living with long COVID.
FURTHER INFORMATION
Long Covid Kids
‘Shining a light on long COVID in children: A Guide to Recognition. Support. Recovery.’
To access the new guidance, visit: www.longcovidkids.org