With lack of vaccinations and schools in England set to reopen cases must not be ignored, experts warn
Scientists have warned that emerging data on long Covid in children should not be ignored given the lack of a vaccine for this age group, but cautioned that the evidence describing these enduring symptoms in the young is so far uncertain.
Recently published data from the Office for National Statistics (ONS) has caused worry. The data suggest that 13% of under 11s and about 15% of 12- to 16-year-olds reported at least one symptom five weeks after a confirmed Covid-19 infection. ONS samples households randomly, therefore positive cases do not depend on having had symptoms and being tested.
With schools in England poised to reopen on Monday – Prof Christina Pagel, a member of the Independent Sage committee and director of clinical operational research at University College London – in a Twitter post suggested that although emerging data on long Covid in children was uncertain, it should not be ignored, particularly given there was no licensed vaccine for these age groups, and there probably won’t be until the end of this year or early next year.
Although children are relatively less likely to become infected, transmit the virus and be hospitalised, the key question is whether even mild or asymptomatic infection can lead to long Covid in children, said Danny Altmann, professor of immunology at Imperial College London.
“The answer is that it certainly can, and the long Covid support groups contain a not insignificant number of children and teens,” Altmann said.
Sammie Mcfarland, a 45-year-old fitness instructor, and her 14-year-old daughter, Kitty, have endured a plethora of symptoms ranging from mild to debilitating since getting infected last March. Their initial attempt in May to get help led to a nurse diagnosing Mcfarland as depressed, and her daughter mimicking her symptoms.
“I came away from that appointment feeling very broken, and very unheard and questioning my own sanity,” said Mcfarland. “And then I spent three days in bed being very tearful … and I woke up after the third day thinking that I can’t be the only one.”
While Covid-19 was initially understood to be a largely respiratory illness from which most people would recover within two or three weeks, as the pandemic wore on increasing numbers reported experiencing symptoms for months on end. These long haulers – with symptoms affecting organs ranging from the heart to the brain – have no standardised treatment plan.
As the summer dragged on, mother and daughter didn’t get much better. Mcfarland said she felt compelled to reach out to other families whose children were in the same boat. Eventually, the group Long Covid Kids was born – now the support group includes about 1,700 children with long-term symptoms post-Covid-19.
Frances Simpson, a lecturer in psychology at Coventry University and co-founder of the group, said she was very worried about the emerging data on long Covid in children. “We just think that there should be a much more cautious and curious approach to long Covid rather than a kind of a sweeping generalisation that children are OK, and that we should just let them all go back to school without any measures being put in place.”
One issue, she said, is the sizeable gap between acute infection and long Covid kicking off. Some children are initially asymptomatic or have mild symptoms but then it might be six or seven weeks before they start experiencing long Covid symptoms, which can range from standard post-viral fatigue and headaches to neuropsychiatric symptoms such as seizures, or even skin lesions.
At the moment there is no consensus on the scale and impact of long Covid in adults, but emerging data is concerning. For children, the data is even more scarce.
Recent reports from hospitals in Sweden and Italy have generated concern, but this data is not from national trials – they are single-centre studies – and include relatively small patient numbers, said Sir Terence Stephenson, a Nuffield professor of child health at University College London.
Stephenson was awarded £1.36m last month to lead a study investigating long Covid in 11- to 17-year-olds. “I don’t have a scientific view on what long Covid is in young people is – because frankly, we don’t know,” he said.
Preliminary results are expected in three months.
As for the ONS results, critics say that given there is no comparator group – and some symptoms such as fever and cough are common in childhood – the data is not entirely reliable.
“I don’t know that that is a very accurate way of gathering data … I don’t think that’s likely to be truly reflective of how many young people are really experiencing persistent symptoms,” said Dr Liz Whittaker, senior clinical lecturer in paediatric infectious diseases and immunology at Imperial College London.
“I’m talking to paediatricians who are already getting referrals – the numbers aren’t huge … I don’t think there’s a huge cause for concern,” she said, adding that what parents are most frustrated by is that nobody knows much about it because it’s a new condition.
“The good news is that the majority of young people who get chronic fatigue tend to get better with appropriate support.”