Children and young people with Covid Longa are at risk of losing school

A alliance Millions Missing (AMM), an association that represents patients affected by post-viral syndromes, today warned of the risk of children and young people with Covid Longa losing their school career due to lack of an articulated response.

In an interview with the agency Lusa, the co-founder and president of AMM, Joan Serra Hoffman, spoke of the lack of articulated response in the educational, health and social protection systems, highlighting the consequences in children and adolescents who can extend to adulthood and compromise the continuation of studies or entry into the labor market.

“ A child cannot lose his educational path because he has become ill and systems do not know how to respond. When the disease prevents a young person from continuing to study, the answer cannot stay only within the consultation,” Joan Serra Hoffman said in May she was on a health committee in Parliament where testimonies were presented from people living with these diseases.

“ We'll wait for the resolution. It's not out yet. We admit that with the holidays and everything is normal, but it is important not to fall into oblivion ", he added.

The Directorate-General for Health and Food Safety, a department of the European Commission responsible for defining and implementing European policies on public health, food safety and animal welfare, published on 16 September a document recommending protection for children and young people who have become ill and who have no longer been able to continue their educational path.

This is a policy paper that includes an online survey that brought together 2,042 people from 30 countries.

AMM highlighted that one of the sections is dedicated exclusively to children and young people and identifies difficulties in recognizing Covid Longa in this age group.

“It is explicitly requested that these children and young people be protected (...). Just as adjustments are needed in the work for adults, adaptations are needed in the school ", said to Lusa, Joan Serra Hoffman, recalling that "Covid Longa remains invisible, underdiagnosed and without structured response in Portugal".

“ But it affects many children and adolescents. There is already evidence of this”, considered the president of the association, using a study of 2023 that identified Covid Longa in 17.6% of the children and adolescents studied.

The absence of further studies and a national register on Covid Longa is also a concern of specialists and academics studying this and other diseases related to post-viral syndromes, such as Myalgia Encephalomyelitis/Chronic Fatigue Syndrome (MS/SFC).

To Lusa, pulmonologist João Carlos Winck, who is responsible for consulting Covid Longa and the Pulmonology Unit of the CUF Institute, admitted that Portugal does not have a referral network for this disease, so the patients are “a little scattered, some in the health center, others in the psychiatrist, others in the rheumatologist”, being “important to create a multidisciplinary consultation of national reference”.

“ What you think of Portugal is that there are at least 100,000 people with Covid Longa. But there is no epidemiological study. This value is based on the number of cases of Covid-19 that occurred in Portugal”, described the professor at the Faculty of Medicine of the University of Porto.

Related to Covid Longa, João Carlos Winck described symptoms such as fatigue, neurological symptoms, and mental tiredness – what people call “mental fog” – as well as heart problems, tachycardia – “a heart that starts to start shooting suddenly when people stand up long” – very low tensions and dizziness.

“ That is, all organs can be affected. I am not a child doctor, but if adults describe this picture, it is easy to estimate that in children and adolescents the disease affects in a way similar to that of adults, but the repercussion is much greater because these young people may be co-arranged from their learning, from their participation in physical activity ", warned.

On the other hand, the rheumatologist and professor-teacher of the New University of Lisbon, Jaime Branco, goes further: “In general people only have one social lift, which is education. Imagine yourself a child or a teenager to whom this social elevator is taken. It's dramatic. Even if it's just a Portuguese guy, even if it's just one. But it's tens or hundreds for sure. And in Europe there are thousands,” Lusa said.

For Jaime Branco “it is very worrying” that “patients who have cognitive changes that do not allow them the school performances they had before do not have a safeguard”.

“ These children and adolescents will arrive, some have reached adulthood, and they cannot find capable jobs, even because if they continue with fatigue they cannot work full time ", estimated.

In addition to the difficulty in obtaining a diagnosis for this disease or the lack of national estimates and studies – a reality that Jaime Branco said was identical in several European countries – the MMA warned of increased difficulties in these age groups because children cannot always verbalize the symptoms they feel and the community does not always trust what patients and families report.

“ We want to have clinical standards that are up to international clinical scientific knowledge of diagnosis. We want to have a minimum share of care in the SNS [National Health Service]. May Portugal begin to build responsiveness to connect with these post-infectious diseases. We dream that there is a center of clinical excellence about this disease in Portugal”, Joan Serra Hoffman concluded.