In March 2020, Kitty Mcfarland developed a sore throat and a minor cough. The 14-year-old had a slightly raised temperature for a couple of days and felt fatigued, like her mother, Sammie, who had already caught the novel coronavirus that had begun spreading across Europe. Kitty’s breathing was a bit labored, but she was told she didn’t need to go the hospital. For several weeks, she appeared tired but otherwise recovered.

“Looking back, I don’t think we realized how ill we were,” says Sammie, a Pilates and well-being coach in the west of England. Around six weeks postinfection, after going for a walk to get some exercise, Kitty experienced chest pains. “She didn’t get out of bed unaided for eight months,” says her mother, who also found herself unable to get out of bed or clean herself. “My husband became our carer for the entire time. We didn’t even have the ability to sit up and eat meals without being supported.”

When Sammie visited her general practitioner around May 2020—it would take Kitty until January this year to see a doctor, who said he couldn’t help her—the nurse who took her blood suggested that her symptoms might be depressive, and that her daughter was mimicking them. “The narrative is still very much that children don’t get ill, don’t transmit COVID, don’t get long COVID,” Sammie says. “It’s been a battle the whole way through, just to be believed.”

Long COVID is a poorly understood collection of symptoms, ranging from fatigue and shortness of breath to organ inflammation and behavioral changes, that may persist after someone recovers from coronavirus infection. It is distinct from the lingering effects of COVID-related organ damage and, as it often affects people who may have experienced mild or no symptoms during their infection, it is difficult to know how widespread it is.

Some studies suggest around 30% of people who had COVID go on to develop long-COVID symptoms, although most recover quickly. One recent U.K. study suggested only 4.4% of children with symptomatic COVID experience symptoms beyond four weeks, and only 2% beyond eight. However, another study said 14% of 11- to 17-year-olds who contracted COVID were still suffering from symptoms 15 weeks later—older children seem to fare worse. To put those numbers into perspective, the European Union considers a disease “rare” when it affects fewer than one in 2,000; in the U.S., it’s one in 200,000.

Looking online, Sammie Mcfarland was able to find a long COVID support group for adults, but nothing for children, so she founded the Long COVID Kids group, which now provides support and advocacy for nearly 4,000 children in a variety of countries, with a median age of 10. The charity is listed as a resource by the U.S. Centers for Disease Control and Prevention (CDC), and Mcfarland is on the U.K. National Health Service (NHS) Long COVID Task Force, but she still doesn’t believe authorities are taking the issue seriously enough.

“People are listening, but I don’t think they’re hearing what we’re saying,” Mcfarland notes. “We don’t have the longitudinal data [tracking patients over time] so therefore there’s this blasé approach that children are ill for 12 weeks. [Some children in the Long COVID Kids group] have been ill for 18 months. We are the evidence; our children are the evidence.”

Poor understanding

The lack of data around long COVID in children has several contributing factors, including the absence of a clear definition for the phenomenon, variance in research methodologies, and the fact that we are still less than two years into the pandemic.

“The big problem in kids is that we don’t really have a true handle on the rate of it,” says David Strain, the British Medical Association’s lead on long COVID and another member of the NHS task force. “The numbers vary depending on which report you’re reading—anything from one in seven, down to one in 30. But even if it’s one in 30, with the number of children getting it at the moment, that’s a huge problem.”

It’s also harder to diagnose long COVID in children than it is in adults. Whereas the vast majority of adults suffering from the condition have similar symptoms—fatigue, brain fog, chest pains—Strain warns there is no typical presentation in children. “It affects everybody differently and at different timescales,” he says.

Some of the symptoms are similar to those experienced by adults, albeit harder to spot. “Kids have a tremendous biological reserve,” says Strain. “If you take away 20% of the energy of a 5-year-old, you don’t really notice it.” That could mean a large number of children with reduced concentration levels—“what in an older person would be regarded as brain fog”—could remain undiagnosed and could suffer during their ongoing education.

However, some of the more extreme symptoms—the kind that concerned parents enough to join the Long COVID Kids group—are more immediately worrying. Mcfarland says the group’s members have variously experienced seizures, headaches, nausea, tinnitus, visual impairment, heart palpitations, brain inflammation, developmental regression, rashes, and skin lesions so severe that doctors incorrectly suspected they were the result of self-harm.

“One thing we know about long COVID is it seems to be a multisystem disease affecting blood vessels, [and it] can present in a whole host of different manifestations,” says Strain. “I’ve heard of skin lesions, aches and pains, children being awake through the night with more than standard growing pains, huge mood swings, children who just go to bed for no apparent reason.”

John Warner, emeritus professor of pediatrics at the National Heart and Lung Institute, Imperial College London, says he has also come across chilblain-like lesions on children’s fingers and toes, as well as recurrent rashes. Some kids with long COVID have what is known as multisystem inflammatory syndrome in children (MIS-C), which can leave them with organ damage, he says. Then there are the teenagers with long COVID who have also developed Tourette’s syndrome, which manifests in tics, sometimes including uncontrollable outbursts of foul language.

“These are horrible symptoms for a teenager, causing incredible mental stress, not only for the child but also for the rest of the family and everybody around them,” says Warner. He adds that he also spoke to a sufferer whose mild allergy to tree fruits had suddenly become worse after her illness: “She had the COVID infection and, because she still likes eating apples, she had an anaphylactic reaction that nearly killed her, having never had anything like that before.”

So with such a vast array of symptoms manifesting, and with an unknown number of children being affected by long COVID, what should policymakers have done differently—and what should they be doing now?

Balancing risks

As countries open up after a period of lockdowns, some have calculated that the benefits will outweigh the effects of the virus ripping through largely or entirely unvaccinated younger age groups.

“It is quite natural for infection to occur among children,” said Søren Brostrøm, director of Denmark’s National Board of Health, in August when the country dropped its last restrictions. “We don’t have a strategy that the infection should spread through the children, but we accept infection because children don’t get so sick.” Danish health expert Nils Strandberg said at the same time that “restrictions among children serve no purpose” and that people would have to “get over” the fact that most of their kids would be infected by the end of this year.

According to Emma Duncan, professor of clinical endocrinology at King’s College London, the case for vaccinating children is less clear-cut than it is for adults, where the benefits of vaccination vastly outweigh the risks. There is a very small risk of heart inflammation in children who get the COVID jab—it’s extremely rare, and most people recover from it quickly, but it may change the calculus when children typically don’t get as sick from the disease itself as adults do.

“There is a balance to be considered: On the one hand, the risks and benefits of avoiding SARS-CoV-2—both from an individual and a community perspective, including the effect on school interruption—and on the other, the risks and benefits of vaccination,” says Duncan, who led the research showing that fewer than 2% of children presenting with long COVID have symptoms for longer than eight weeks.

“This percentage is low,” she notes, “though as the number of children infected with SARS-CoV-2 depends on community circulation and vaccination rates [it] could still represent a large absolute number.”

Warner argues that authorities should have pushed harder for kids’ vaccines “some time ago, so they could then open up with children having been protected.” He is worried not only about the long-term health legacy for today’s children, but also about COVID outbreaks closing schools and further damaging pupils’ education.

Strain also says he is “very concerned” about countries opening up with insufficient protection for kids. “I fully accept that children have a much lower risk of ending up in hospital. It does represent a very small percentage of the children who get it,” he says. “But we don’t know the long-term consequences.

“The risk of voluntarily putting children through this, when we don’t fully understand it and the problems might not be manifest for years, is reckless to say the least,” adds Strain. “I fully appreciate the need to reopen the economy, but simple measures like wearing masks in school, like enhanced ventilation, they’re not going to hold the economy back or prevent us from getting on with our lives. They are the sorts of measures we should have in place to protect the future generation.”

Parental choice

Sammie Mcfarland also recommends mandatory mask-wearing in schools, and better ventilation. “I would recommend offering the vaccine to all children,” she says. “I don’t think it should be mandatory—I believe in parental choice—but I think we have to admit that long COVID is a risk and look at how we can prevent infection by improving mitigation measures in school. Until we have that honesty, I don’t think families will moderate their habits enough to reduce transmission.”

Everyone agrees there is a need for urgent support, the effectiveness of which will depend on a better understanding of long COVID. The British government recently devoted $27 million to long-COVID research, and Warner says this could make it possible to better target treatments.

“The key issue is about physicians throughout the health service recognizing that long COVID is a real issue and…not a mental health problem where it’s just a matter of trying to get people to [pull themselves through it] or if anything just going to see a psychologist or a psychiatrist,” he says. “This is a physical problem that has to have some form of physical solution. And there has been a tendency for people to just be dismissed.”

Some cases of long COVID involve post-viral fatigue, which Warner says requires programs that gradually increase physical and mental activity. “Unless people have to do that, they will remain incapacitated,” he warns. “Maybe forever.”