Children With Long Covid Risk Losing Their Schooling Because No Service Takes Charge of Them, a Patients' Alliance Warns

Children and teenagers with long Covid in Portugal risk losing their schooling because no part of the State has an organised answer for them, a patients' association has warned. The Aliança Millions Missing (AMM), which represents people with post-viral illnesses, says health, education and social protection each leave these pupils to the others.

"A child cannot lose their education because they fell ill and the systems don't know how to respond," the association's co-founder and president, Joan Serra Hoffman, told Lusa. "When illness stops a young person from carrying on studying, the answer cannot stay inside the doctor's office."

A European paper and a pending resolution

In May, Hoffman took part in a hearing of parliament's health committee where people living with these illnesses gave evidence. The association is still waiting for the outcome. "It hasn't come out yet," she said. "We accept that with the holidays that is normal, but it is important that it isn't forgotten."

On 16 September the European Commission's directorate-general for health and food safety published a policy paper, built on an online survey of 2,042 people in 30 countries, which recommends protecting children and young people who fell ill and could no longer continue their education. One section deals only with this age group and identifies how hard it is to get long Covid recognised in children. "Just as adults need adjustments at work, children need adjustments at school," Hoffman said, adding that long Covid "remains invisible, underdiagnosed and without a structured response in Portugal".

How many are affected

Nobody knows. The AMM cites a 2023 study that found long Covid in 17.6 percent of the children and adolescents it examined. João Carlos Winck, a pulmonologist who runs a long Covid clinic at the private Instituto CUF and teaches at the University of Porto's medical school, told Lusa that Portugal is thought to have at least 100,000 people with the condition, but that the figure is extrapolated from Covid-19 case numbers, not from any epidemiological study.

Portugal has no referral network, Winck said, so patients end up "a bit scattered": some with their family doctor, others with a psychiatrist or a rheumatologist. He listed fatigue, "brain fog", sudden racing of the heart on standing, very low blood pressure and dizziness among the symptoms. In children the effect is greater, he argued, because it can cut them off from learning and from physical activity.

Jaime Branco, an emeritus professor of rheumatology at NOVA University Lisbon, was blunter. "In general people have only one social lift, which is education. Imagine a child or a teenager who has that lift taken away," he said. Some are already reaching adulthood unable to find suitable work, he added, because continuing fatigue keeps them from working full time.

What the alliance wants

The AMM is asking for clinical guidelines in line with current international knowledge on diagnosis, a minimum quota of appointments in the SNS, the national health service, and, in time, a national centre of excellence for post-infectious illnesses. Specialists also regret that Portugal has no national register of cases and few studies.

For families, the practical route today runs through the school. Portugal's inclusive education law, Decreto-Lei n.º 54/2018, lets each school's multidisciplinary team set support measures for a pupil, from adapted assessment to changes in the curriculum, and parents can ask for that process to start. The alliance's point is that, without a diagnosis that schools and doctors recognise, many children with long Covid never get that far.