Too many children with long COVID are suffering in silence. Their greatest challenge? The myth that the virus is ‘harmless’ for kids – ABC News
June 16, 2024
Before she got sick with long COVID, Vivien* was at the top of all of her classes at school. She loved playing basketball and netball and running around with her dogs she'd even take herself for runs around her family's sprawling property in regional New South Wales, just for fun. She's still only 12 but for the longest time Vivien has dreamed of being a vet when she grows up. "And she was so social," her mother Katie* says. "My husband and I are both introverts. Not V she would party every day if she could."
Now, two years since she caught SARS-CoV-2 for the first time, a "good day" for Vivien looks nothing like it used to. She's always exhausted, but her achy limbs might feel less tingly and weak; perhaps her upset stomach is calm, and her brain fog has cleared enough that she can do some school work or call a friend. On a really good day, she can manage a visit with her grandparents, so long as she's prepared to spend the evening in bed. "Long COVID makes my body feel weak," Vivien says. "But I tell myself I am still powerful."
She's strong because she has to be. Like many kids with long COVID Vivien has seen a dizzying number of doctors, not all of whom have believed or helped her. She's made the tricky transition to homeschooling, learned to manage her turbulent symptoms with pacing and medication, cried fat tears of frustration after doing too much and wiping herself out.
"I want people to know that I'm not lying, [long COVID] is real and can happen to anyone," Vivien says. "I want people to know I'm not just trying to get out of doing school or sport I wish I could do sport I wish they understood I am just trying to save myself from being stuck in bed in pain for days afterwards."
More than four years after the first COVID patients began raising the alarm that they weren't getting better, scientists are still racing to unravel the mystery of why a significant minority of people develop debilitating chronic symptoms while others seem to recover just fine. But if the plight of adults with long COVID remains poorly understood, the millions of children who have it worldwide are practically invisible, their suffering and the formative years they're losing to this disease obscured by the myths that COVID is "harmless" for kids and the pandemic is "over".
In Australia, the lack of awareness is biting in shocking ways. Too many children with long COVID are being dismissed by doctors who say there's nothing they can do to help or worse, that their pain and fatigue is "all in their head". They're being pushed out of school by teachers who don't understand why they can't come to class or run around with their peers. Their parents have been gaslighted and blamed, too, not just by medical professionals but their closest friends and family. And experts are concerned that all this ignorance and apathy and the unwillingness of governments to do more to curb COVID transmission is exposing a generation of children to the same chronic illness and disability, with potentially devastating consequences.
"These kids' worlds just get very small, very quickly," says David Putrino, who runs a long COVID clinic as director of rehabilitation innovation for the Mount Sinai Health System in New York. "We see kids missing school, being unable to participate in sports, we see social isolation." Long COVID is "a lot more complicated and more brutal" for young people, he says adults tend to be better able to navigate the medical intricacies and politics of their illness. "I don't like comparative suffering as a concept but I do know that kids are having a harder time with it because people seem to be less understanding of it."
A crucial reason paediatric long COVID has been overlooked is that children generally suffer less severe acute infections than adults. Governments and public health agencies have also been "pushing the narrative" that the only negative possible outcome of catching COVID is death, Dr Putrino says. "We looked at the acute phase and said, 'This doesn't seem so bad for kids', and we forgot about the cumulative risks over time." It doesn't matter how mild your acute COVID infection is, he says: "You have the same risk of developing long COVID. And I say 'cumulative' because the latest data shows us that with every reinfection, your risk of long COVID increases."
Getting a handle on the scale of the problem is difficult because prevalence estimates of long COVID in children vary widely, though many researchers believe it likely affects 15 per cent of kids who catch the virus. While some experts have argued it is "rare" and not a concern for most families, others insist even 1 per cent is significant given huge swathes of the population are getting (re)infected and the impacts of long COVID are so severe. In the UK, for instance, the number of children reporting they have long COVID almost doubled in the year to March 2024, with nearly one in five revealing their symptoms limited their ability to undertake day-to-day activities "a lot".
As for what it looks like, long COVID can affect multiple organ systems and trigger a constellation of symptoms that can last for months or years: the most common are fatigue, including post-exertional malaise (PEM) or "crashing" after even light activity; cognitive dysfunction and headaches; gastrointestinal issues and allergic reactions; nerve and muscle pain; dysautonomia; and shortness of breath. These symptoms overlap with those of myalgic encephalomyelitis/chronic fatigue syndrome, to the extent that many long COVID patients meet ME/CFS diagnostic criteria, their fatigue and PEM stopping them from living their normal lives well beyond six months.
And if the causes of long COVID sound complex, it's because they are. Researchers have zeroed in on several likely mechanisms, including viral persistence; inflammation and immune dysregulation; blood clotting and coagulation issues; organ damage; autoimmunity; reactivation of latent viruses like Epstein-Barr; and disrupted brainstem signalling.
Still, there is a serious lack of research on long COVID in children, particularly in Australia, which is concerning because, as a parliamentary inquiry last year heard, young people may be at greater risk of repeated infections as they spend so much time in crowded spaces like schools, and they have lower rates of vaccination than adults.
But identifying these kids in the first place can be challenging, raising concerns many are being missed or misdiagnosed. Doctors say it's common for children to present initially with gastrointestinal issues complaints of an upset stomach, usually and only with careful questioning does the full picture of their illness become clear. "It's surprising how profoundly long COVID can impact a child's life, and how much inquiry you have to do to actually work that out," says Michelle Scoullar, a Melbourne-based paediatrician at Clinic Nineteen, a specialist practice that sees long COVID patients by telehealth.
Because Dr Scoullar's patients are so resilient, she says, they'll often tell her at the start of an appointment that they're "doing okay", maybe even improving. But with deeper probing she'll discover that "okay" is anything but: they're not just struggling to get to school, they don't have the energy to get to the bathroom by themselves. "Improving" by their standards might mean they were able to spend 20 minutes at the dinner table one evening, but pretty much the rest of the week on the sofa or in bed. "We've got kids missing out on large chunks of their childhood," she says. "And the social, developmental and educational impacts of that can last years."
One of the things that shocks Dr Scoullar most, though, is how many of her patients have struggled with other doctors, especially paediatricians. Instead of kindness and support, she says, "They get judgement, ignorance and not just unhelpful advice, but incorrect and harmful advice. Many of the children I have seen have been told to just rest up, try a bit harder, get back to exercise. They're told, 'You're not doing enough and that's why you're feeling so tired'," she says. "And that's just completely unacceptable."
Katie learned that the hard way, riding a "rollercoaster of GPs" in the months after Vivien fell ill. The "biggest problem" is that many GPs don't understand what long COVD is, she says, and some are reluctant to refer to specialists.
The first GP they saw told Katie that "kids don't get long COVID" so she should just keep an eye on Vivien. Another listened as she explained her daughter's symptoms and insisted there was nothing wrong, it was "just a bad respiratory season". "We need to educate GPs because they're gatekeepers," Katie says. "Once we found a GP who was humble enough to admit she didn't know what was happening, things got better."
But specialists weren't much help, either. One of the two times Katie has cried about a doctor was after an appointment with a paediatric neurologist in Sydney, who she hoped would have answers for Vivien's headaches and lost sense of smell. Instead, the doctor shrugged and said there was nothing much she could do, just give it more time. Katie was stunned; she'd waited eight months and paid nearly $800 for the appointment she didn't need counselling on patience. "That was the day that broke me," she says. "We were walking back to the car, four hours from home, and I just could not stop crying. I desperately wanted that neurologist to be part of the solution. If we could just fix the headaches"
Mark Donohoe hears stories like these every week. An integrative GP who has been treating people with ME/CFS for 40 years, Dr Donohoe says a common stumbling block for kids with long COVID is that standard blood tests will often come back normal and many GPs and paediatricians don't know to check for postural orthostatic tachycardia syndrome (POTS), a type of dysautonomia common among long COVID patients that can cause a rapid increase in heart rate on standing, dizziness, headaches and fatigue. Delays in getting diagnosed can be costly, he says. "The longer you've been sick, the longer it takes to recover function."
But because research on long COVID is still emerging, time-poor doctors can lose their curiosity about what's happening for their patients, Dr Donohoe says, not realising supplements, medication and lifestyle interventions can dramatically improve their quality of life. They'll say, "It's long COVID, the official answer is there's nothing to do," he says. "And they tell the parents, 'Just get them up and get them active' and that's the advice that really exacerbates things." Because if a child who suffers from post-exertional malaise (PEM) is pushed beyond their capacity, they can deteriorate rapidly.
Crucially, PEM isn't "normal" fatigue; it's not just feeling tired after a big day or a sign a child is out of shape. It's a worsening of symptoms after physical or cognitive activity a failure of the immune system and metabolism to meet energy demands. It also looks different in every patient: some can't brush their teeth without triggering it, while others might be able to get to school but then suffer a crash that lasts for days as a result. And for many people with long COVID and ME/CFS, exercise is a sure-fire way to provoke PEM, which is why clinical guidelines in the US and UK advise doctors not to recommend it without strict supervision.
Australian guidelines seem to be stuck in the past. The current clinical guidelines have faced sustained criticism for promoting graded exercise therapy since they were published in 2002. And the Royal Australian College of General Practitioners' new guidance on incremental physical activity for ME/CFS points to the controversial PACE trial a 2011 study that claimed patients who did graded exercise and psychotherapy made impressive recoveries but does not mention its methodology was found to be flawed and its findings exaggerated.
RACGP President Nicole Higgins says the guide clearly states that "this approach will not be suitable for all patients" and "does not purport to be a guideline for the comprehensive management" of ME/CFS. But patients and advocacy groups have argued it ignores the science of PEM and downplays the risk of harm to people who suffer it.
Graded exercise therapy can be appropriate for some children with long COVID and ME/CFS, says Todd Davenport, a physical therapist and exercise scientist at the University of the Pacific in California. But "it really takes a clinician who is familiar with long COVID to first determine when working out will not work out".
Instead of guiding patients to exercise, Dr Davenport says, GPs should first establish whether PEM is a problem, then look at treating its underlying causes. "I always suggest referring to experts who are in the best position to help the patient and also to support the GP," he says. If they determine that exercise could be helpful, he says, it should be closely monitored to avoid triggering PEM.
Aside from prescribing unqualified exercise, Dr Donohoe says one of the "worst" decisions a doctor can make about a child with long COVID is that there's nothing wrong with them and "they need to see a psychologist". For one thing, it ignores the thousands of peer reviewed studies documenting the disease processes of long COVID. But it's a pivotal moment, he says, "where what we're really saying in medicine is, 'We haven't got a clue what's going on but this may make you feel better'. I think that's the point where [conditions like long COVID and ME/CFS] get converted into a psychological or psychiatric disorder."
Sometimes that conversion happens terrifyingly fast. For three months after Jack* caught COVID last May he was in and out of the emergency department at a Perth hospital with 10 out of 10 stomach pain and fatigue so crushing he couldn't walk.
Now aged 13, Jack was a fit and talented athlete whose life revolved around sports, especially cricket, rugby and tennis. It's a major reason his father Brett* was so shocked when, during one of their visits to the hospital, a neurologist performed a few reflex tests on Jack, concluded his nerves were fine, then announced his symptoms were psychological.
"He said, 'Listen, it's all in your son's head, he has something called FND functional neurological disorder'," says Brett. "I said, 'Is that psychosomatic?' and he said, 'Well, we don't call it that anymore'." Brett now knows that FND is a controversial diagnosis that should only be made after excluding other possible medical conditions. Numerous long COVID patients have reported being misdiagnosed with FND a precarious situation, experts say, because it can block their access to testing and treatment. But Jack was devastated. "He was crying because he's the kid who goes to rugby with a migraine he'll push through anything," Brett says. "So for the neurologist to say it was all in his head, I think that broke him a bit."
A couple of months later, having dug deep into the research on long COVID, Brett took Jack to Europe, where he underwent several cycles of an expensive blood filtering treatment called H.E.L.P. apheresis. The enormous cost about $30,000 all up should have ruled the trip out, but with the generous support of family and friends, they raised enough money to go.
Brett felt sure it was the best next step; taking vitamins and supplements helped Jack to a point, but his progress had stalled, and local doctors weren't offering anything other than paracetamol. "We were reaching the six-month mark and I knew we had to act quickly," Brett says. "[Jack] is a really, really good sportsman, I didn't want him to live with a disability."
For long COVID patients, apheresis involves removing the blood, filtering it of SARS-CoV-2 spike proteins and so-called microclots that may be clogging capillaries and stopping oxygen from getting to tissues, then returning it to the body. The microclot hypothesis as a driver of long COVID remains just that, and some experts have warned there is little published evidence showing apheresis is an effective treatment. While some patients say it has helped them almost fully recover, others have reported it made no difference or in some cases made them worse, so those who decide to have it are gambling that it will work.
Jack made a remarkable recovery. "I got a lot better like, 90 per cent better," he says. "I was able to play tennis and go surfing and all of that." He's since suffered a disappointing relapse but his symptoms aren't as bad as they were before apheresis. In all, it was a positive experience, says Brett, who is "seriously considering" another trip overseas.
Still, he's frustrated that he felt forced to pursue an unapproved treatment on the other side of the world and that most doctors' understanding of long COVID lags so far behind the science. "It's been really tough to sit on the margins of what people think is conspiracy and what is science and logic," he says. "Even some of my closest friends have been fighting me on it unwilling to engage in the conversation, simply because it went against the narrative."
But then ignorance and judgement can often be found in the most unlikely places. Leah's* son Sam* had been struggling with long COVID and POTS for about six months when his Sydney public high school rang her to say he wasn't meeting attendance requirements and would need to switch to distance education.
At that point Sam was pushing himself to get through two or three classes a day, even though it seemed to be making him sicker he was desperate not to fall behind academically and, like most teenagers, loved spending time with his friends. "His number-one goal is just to be back at school," Leah says. But although his doctors have provided medical certificates, "the whole way along the school has acted suspiciously, as if he's just avoiding school for the sake of it."
One complicating factor is that Sam often appears fine there's a reason complex chronic conditions like long COVID and ME/CFS are called "invisible" illnesses. Other people don't realise that basic activities drain his energy and flare his symptoms, says Leah, who quit her full-time job to look after him. "Just going up the stairs is hard, he can't shower every day, and when he's not at school he spends most of his time in bed. But if someone comes for a quick visit he can still be pretty witty he masks his symptoms so well so they assume he's fine."
Even close family and friends don't truly get it. "We've been told that COVID is over and everyone just wants to ignore it and pretend it's not there," Leah says. "If it was cancer, people would be checking in and have some level of understanding. But long COVID is this slightly difficult topic that everyone avoids."
After deciding that distance education wasn't going to suit Sam and that his school's attempt to push him out was "totally inappropriate" Leah was on the phone to one of the principals one day when she casually mentioned that she'd sought legal advice to better understand their options. "It was like I'd dropped a bomb," she says. They were suddenly happy to make accommodations and allow Sam to keep coming on a reduced schedule, she says one lesson a day.
Things have since calmed down, but for a while Sam's teachers kept pushing him to try harder, to do more, Leah says, which just piled on even more pressure. "They also didn't properly brief all his teachers. At one stage one suggested in front of the whole class that he was just acting like a bit of a rebel."
Accounts like these are disturbingly common: parents in several states say kids are being made to do vigorous exercise in PE class, urged to stay at school longer than their doctors advise, and refused special provisions for exams. In Dr Donohoe's experience, public schools are generally better than private schools at supporting young people with long COVID and ME/CFS, even in simple ways like finding them quiet spaces to lay down and rest when they need to.
Dr Scoullar has noticed similar patterns. Too often her long COVID patients tell her that their inability to get to school or stay for a full day is "a barrier that schools are very unwilling to work around", she says. "And I have heard of at least a few children who have been asked to leave because they are no longer meeting the school's requirements."
For some students, shifting to distance education is a positive change because it gives them more control over their time and energy. But Sam wouldn't have coped well with the social isolation. "The whole thing has been utterly devastating on so many levels," Leah says of her son's illness. "I'm grieving for the life that he's lost and the life he should be living, because he's missing his teenage years. And I try to be positive; I do believe he can recover. But there are just so many unknowns and so many battles I'm constantly in battles with the school, to get medical letters, and continually having to advocate for him."
It's one of the greatest challenges children with long COVID and their families are grappling with: not knowing when or if they'll recover. Tied to that is the financial pressure so many parents are under: between healthcare appointments, medication and supplements, some are stretching their budgets to spend hundreds or thousands of dollars every month in hopeful bids to get their kids well.
For others who can barely afford to buy groceries, just getting to a GP is out of the question, so thinking about the future is frightening. "You live with this fear of, what's going to happen? What if I have a heart attack or lose more function," says Amy*, who has two kids with ME/CFS and long COVID and also has long COVID herself. "Probably my biggest fear is that this is life from now on."
Some children do recover over time, says Dr Putrino, whose clinic recommends various different therapeutic approaches: autonomic rehabilitation strategies like breathwork and gentle exercise to calm and regulate the nervous system, pacing to manage energy levels, and medication and supplements to target particular symptoms. "In other cases we struggle. Unfortunately, we have a handful of bed-bound patients that no matter what we try, we just can't seem to move the needle," he says. "And so we just do what we always do with any patient whether it be a stroke, or a traumatic brain injury or a long COVID adult we say, 'We're here with you, and we're going to keep trying different things, there's lots of different things to try, and we're just going to try and find the balance'."
While the world waits for clinical trials to shed light on effective treatments, patients say doctors must get up to speed on long COVID at a minimum, GPs need comprehensive guidelines and training on how to diagnose and help patients manage their illness. The final report of Australia's parliamentary inquiry into long COVID recommended the same.
In its response, however, the government merely acknowledged the critical role of primary care providers and did not commit any additional resources for addressing the issues raised. RACGP President Nicole Higgins says funding for the National Clinical Evidence Taskforce's COVID guidelines has also been discontinued. "The RACGP has advocated for government funding for the establishment of living guidelines across a range of topics," she says, "and this is a case study for why such funding is so necessary."
Some experts are also concerned about Australia's COVID vaccine strategy given evidence suggests that vaccination reduces the risk of long COVID, including in young people. The Australian Technical Advisory Group on Immunisation (ATAGI) has previously recommended children aged five and over receive a primary course but now recommends that those under 18 not be vaccinated unless they are at increased risk of severe disease.
"ATAGI's current recommendations acknowledge that overall, severe COVID-19 in children is extremely rare, even among unvaccinated children and those with underlying conditions," a spokesperson for the Department of Health told ABC News. "ATAGI will continue to monitor and review all emerging evidence on the use of COVID-19 vaccines, including the emerging evidence on long COVID as appropriate."
For Dr Putrino, one of the biggest hurdles remains the misconception that children don't suffer long-term consequences after catching the virus. "I think that there's an enormous amount of education that needs to happen to inform parents that yes, your kid can get long COVID. Yes, it could be the reason why they're struggling in school right now," he says. "Get it checked out don't sit around and just assume that they're going through puberty or they're just extra moody; don't sleep on it. Make sure that a doctor evaluates them. Make sure it's a doctor that's knowledgeable and educated about long COVID."
He also worries that not enough is being done to prevent COVID transmission in the community, particularly in schools. Governments could be scrambling to improve indoor air quality with good ventilation, air purifiers and far UV light, he says. But for the most part their approach has been to just let the virus rip and watch the numbers of people with long COVID rise. "I just worry we're going to have a generation of kids who have a post-acute infection syndrome because we failed to protect them," Dr Putrino says, "because we told this lie over and over again that kids have nothing to worry about with COVID."
It's one of the things Katie is most angry about: that Vivien caught COVID at school before she was able to be fully vaccinated. Her quality of life has improved "out of sight" in the two years since then, she says, largely because they finally found a compassionate paediatrician and a couple of other specialists who understand her illness, who want to help.
"But I can see a world where I'd have to be a full-time carer," she says. "That's the thing that's really starting to scare me, is: what does the future look like? All V wants to do is be a vet that's all she's wanted since she was five. But what if she can't? I'm trying to make decisions about our finances now so that we can help her in the future, because I can't imagine that she's ever going to get back to 100 per cent, at least not at this trajectory."
And that, she says, is what most people fail to understand about long COVID: how serious it is, how much is at stake how fast a healthy girl with boundless energy and big dreams can lose it all. "They think it's incredibly rare, or they don't understand that just because you had one 'nice' bout of COVID doesn't mean the next one isn't going to do permanent damage," Katie says. "People just underestimate it; they assume it won't happen to them and if it does, that someone will be there to help them."
*Names have been changed at families' request so they could speak frankly without fear of reprisal.
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Too many children with long COVID are suffering in silence. Their greatest challenge? The myth that the virus is 'harmless' for kids - ABC News
