In March 2020 Sammie McFarland and her 14-year-old daughter Kitty contracted COVID-19. About a month after their initial infections, they both began to experience strange and worrying symptoms that, at the time, could not be explained by doctors: fainting, abdominal pains, brain fog and severe fatigue. These symptoms are now recognized as common signs of post COVID-19 condition, otherwise known as long COVID.
Sammie’s initially fruitless search for answers about her daughter’s illness led her to connect with other parents caring for children with long-term COVID-19-induced symptoms – and so Long COVID Kids (LCK) was born. LCK is a charity that now represents over 10 000 parents of young people with post COVID-19 condition, with members in the United Kingdom and other countries. By raising awareness of symptoms through videos, case studies and even a visual symptoms gallery, LCK helps parents to understand the condition, obtain a diagnosis and seek early interventions that can prevent their child’s health from worsening. Through online groups and message boards, Zoom hangouts and online chat sessions for kids, the charity also offers peer-to-peer support and a sense of solidarity to caregivers and affected young people around the world.
“Experienced parents answer another parent’s call. We have amazing, international moderators who manage the page and the group and make sure that the information is evidence-based. Lots of symptoms can be managed. In many cases kids don’t have to live with them in the extreme, and symptom management can make daily life a little bit more bearable.”
LCK funds post COVID-19 condition research, in which its members also participate. It also campaigns to reduce children’s risk of infection with SARS-CoV-2 through better ventilation and masking in schools, and lobbies for adaptions to be made for affected young people in educational establishments.
“The Long COVID Kids website has a visitor every 45 seconds. We average over 30–40 enquiries a day through emails and social media. It’s gone from being a small grassroots organization to dealing with an absolute tsunami of need.”
Making a difference for affected families
One parent who sought out support was Dr Binita Kane, a consultant respiratory physician from Manchester. Her 11-year-old daughter Jasmin has experienced severe fatigue and a host of other symptoms since a COVID-19 infection contracted in January 2021.
“It’s a very isolating illness, with children often shut away behind closed doors, but the network of support provided by Long COVID Kids has been a lifeline for my daughter. I’m not sure how we would have got through the past 18 months without it.”
Another mother, Harbinder Dhaliwal from London, echoes those comments. Her nine-year-old son Talvin is unable to attend school as a result of the severe symptoms he developed after multiple COVID-19 infections, the first of which was in September 2021:
“We were lucky to find Long COVID Kids when we were at rock bottom, felt alone and completely abandoned. We were at a breaking point as a family. Long COVID Kids gave us hope, made us feel heard and guided us towards therapies that have changed our lives for the better.”
Sammie is clear about what would help children living with debilitating long COVID symptoms.
“I want governments to give more consideration to the many people now living with disability because of post COVID-19 condition. We need research and biomedical studies, not just surveys. And patients should be listened to and accepted as a rich source of evidence.”
While she is saddened that she still has to raise awareness of the condition, Sammie is proud of the organization she helped to create.
“There’s definite strength in the community, which is ironic because we’re at our weakest, physically, and we’re mentally exhausted from having to repeat the same messages about the risks of repercussions from contracting COVID-19. I find hope in the fact that there are some really good people involved in research into the condition. For those of us who were ill in the first wave, it feels so painfully slow, but I’m fully aware that now, when families join the group, we have new information to give them, so that is progress.”
Two and a half years after their COVID-19 infection, both Sammie and Kitty are still affected by their long COVID symptoms. However, through the community they’ve created, they feel connected to people who understand their condition and can empathize with the changes it has brought to their lives.
Increasing recognition, research and rehabilitation for post COVID-19 condition
The scale of post COVID-19 condition (long COVID) and the long-term burden it is likely to have on health systems is only starting to become evident. Studies show that approximately 10–20% of individuals who contracted COVID-19 may experience continued symptoms for weeks to months or even years after their original infection, equating to millions of people worldwide.
More than two years after the pandemic began, we still have little understanding of the ways in which post COVID-19 condition affects both adults and children. More research is needed, particularly in resource-limited countries, to understand its clinical characteristics, frequency and the risk factors that lead some of our juvenile populations to experience its long-term symptoms.
WHO/Europe has been working with patient groups to define priority areas where action is needed. It is now calling upon governments and authorities to focus attention on long COVID and its sufferers through greater:
- recognition: all services must be adequately equipped, and no patient should be left alone or have to struggle to navigate through a system that is not prepared or not able to recognize this very debilitating condition;
- research and reporting: data gathering and reporting of cases and well-coordinated research with full participation of patients are needed to advance understanding of the prevalence, causes and costs of long COVID; and
- rehabilitation: this cost–effective intervention is an investment in building back healthy and productive societies.