Long COVID: new guide to recognition, support, and recovery

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.