Zürich, Bern, 02.11.2024, 23:10 h
Updated: 16.11.2024, 23:50 h
On October 30, 2024, Long Covid Kids Switzerland, Long Covid Switzerland and #ProtectTheKids published a joint press release on Long/Post Covid in children and adolescents, which triggered a huge response in the Swiss media.
To press release (in German)
We would like to draw your attention to the extensive coverage of this topic, but in particular to the report
«Erschöpft und ohne Energie: Eine Betroffene erzählt, wie Long Covid sie die Jugend kostet»
on the plight of 17-year-old Melissa, who was infected with SARS-CoV-2 in November 2021 and developed Covid symptoms, from which she has not recovered to this day.
The report on Melissa and her younger sister, who is also affected by Long Covid, was published in the main edition of all CH Media newspapers on Saturday, November 2, 2024. A science journalist visited the hard-hit family.
An extended version of Melissa’s story has been freely available on watson since November 3, 2024:
Eine Betroffene erzählt, wie Long Covid sie die Jugend kostet
The watson publication also includes an info box entitled «Organisationen kritisieren falschen Umgang mit Kindern mit Long Covid» («Organizations criticize inappropriate ways of dealing with Long Covid in children», scroll all the way down in the publication), which well summarizes the criticism from our press release.
Information leaflet on Long/Post Covid in children and adolescents
The Federal Office of Public Health (FOPH) has commissioned an interdisciplinary group of experts to develop an information leaflet on the Post-Covid-19 syndrome in children and adolescents, aimed at school administrators and teachers, and more generally at cantonal and communal education and health authorities.
Finalized at the end of June 2024 and available on the FOPH’s website since 10.09.2024, the information leaflet on the Post-Covid-19 syndrome in children and adolescents is currently available in German, French and Italian. It describes the symptoms, discusses the challenges in everyday school life and offers helpful, concrete courses of action – an important first step towards better support for school children with Long/Post Covid.
To FOPH information leaflet (in German)
We support children and young people with and without Long Covid
With our fundraising campaign #LongSolidarity, we want to raise awareness of the plight of children and adolescents with Long Covid, who are ill or seriously ill, struggle for months and years with symptoms that severely impair their quality of life, are medically underserved, and often face a lack of understanding from adults.
On behalf of many other affected children and young people, Melissa courageously speaks out in «Erschöpft und ohne Energie»: About her SARS-CoV-2 infection in November 2021 and its consequences, from which she has not recovered to this day. And on how the complete lack of infection control resulted in serious health effects for her entire family.
We do hope that #LongSolidarity will go “viral” in all parts of the country and that it will lead to a better understanding of our society’s problematic approach to Long Covid – especially in children and young people.
And not only by means of today’s article about Melissa’s suffering, but also with the help of important background information on the state of Long Covid research, on the insufficient knowledge of a large part of the medical profession about Long Covid and ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), on the question of why the extent of Long Covid in the Swiss population can only be estimated with the help of international studies, and about the complete lack of mitigations against the transmission of airborne pathogens in Swiss classrooms.
By making a donation, you will support families whose children are affected by Long Covid, help #ProtectTheKids improve air quality in schools and contribute to a fund from which #ProtectTheKids will award high-quality journalistic work on data science in healthcare and other current medical and health topics (see description below).
Your
will be used as follows:
All donations received by Sunday, 17.11.2024, at 23:59 h will be donated in full to the families severely affected by Long Covid. The corresponding donation amount is to be transferred to the patient organization Long Covid Kids Switzerland at the end of November 2024;
Donations received from Monday, 18.11.2024, 00:00 h will be used as follows:
- 40 % in favor of the #LongCovidKids fund, which #ProtectTheKids will use to support affected families, for example to finance off-label therapies. These contributions are to be transferred to the patient organization Long Covid Kids Switzerland;
- 40 % in favor of the #CleanAirForSchools fund, which #ProtectTheKids will use to improve air quality in schools; and
- 20 % in favor of the #QuestForQuality fund, which #ProtectTheKids will use to reward high-quality journalistic work on data science in healthcare, indoor air quality, infection control, prevention, basics of and new findings in immunology, and the long-term and late effects of infectious diseases.
Donation meter
#LongSolidarity donation meter
08.11.2024, 12:00 h: CHF 445
09.11.2024, 15:15 h: CHF 545
Long Covid in Children and Young People: Press review
Our press review from 30.10.2024 to 03.11.2024
Medienmitteilung «Long/Post Covid bei Kindern und Jugendlichen» (Long Covid Kids Schweiz und #ProtectTheKids, 30.10.2024, 07:15 h)
«Long covid: le associazioni criticano il trattamento riservato ai bambini» (tio, 30.10.2024, 10:34 h)
«In Svizzera quest’anno si stima che 18’000 bambini e adolescenti sono affetti della sindrome della long Covid», Relazione del 31.10. in Radiogiornale, dal minuto 6.45 (RSI, 30.10.2024)
«Organisationen kritisieren Umgang mit Kindern mit Long Covid» (Nau, 30.10.2024, 11:03 h)
«Haben Kinder, die gesagt haben, dass sie nicht mehr leben möchten» (Blick, 30.10.2024, 11:37 h)
«Long-Covid-Fälle bei Kindern explodieren – jetzt reagiert der Bund» (bluewin, 30.10.2024, 12:24 h)
«Explosion des cas de Covid long chez les enfants» (bluewin, 30.10.2024, 12:25 h)
«Long Covid cases in children are exploding – now the federal government is responding» (bluewin, 30.10.2024, 12:25 h)
«Wie können Schulen Kinder mit Long COVID unterstützen?» (altea, 30.10.2024)
«Long/Post Covid bei Kindern und Jugendlichen: Experten und Präventionsbefürworter fordern rasche Verbesserungen in den Schulen» (DMZ, 31.10.2024, 13:15 h)
«Erschöpft und ohne Energie: Eine Betroffene erzählt, wie Long Covid sie die Jugend kostet» (Tagblatt, 02.11.2024, 08:00 h)
An extended version of the report on Melissa’s story has been freely available on watson since November 3, 2024:
Eine Betroffene erzählt, wie Long Covid sie die Jugend kostet
(watson, 03.11.2024, 16:43 h)
The publication on watson also contains an info box entitled «Organisationen kritisieren falschen Umgang mit Kindern mit Long Covid» (Organizations criticize inappropriate ways of dealing with Long Covid in children, scroll all the way down in the publication), which well summarizes the criticism from our press release.
Pathophysiological mechanisms – scientific consensus in mid 2024
We cannot agree with the statement «Long Covid in children is very rare» in the quoted Tagblatt article of November 2, 2024. As our press release notes, citing its sources, the UK Office of National Statistics (ONS) found a prevalence of 1.0 % in its most recent survey (March 2024) of Long Covid in children and adolescents aged 3 to 17. Compared to studies that characterize the individual manifestations (post-acute sequelae of Covid-19, PASC) more precisely (Gross et al., 2024), this is a very conservative estimate. A prevalence of no less than 1.0 % suggests that at least 18’000 children and adolescents in Switzerland meet the criteria for Long Covid.
Moreover, the statement
«Es ist auch bei Kindern so, dass es sich um ein multifaktorielles Geschehen handelt und noch keine wissenschaftlich fundiert geklärte Ursache identifiziert werden konnte.»
(«In children, too, it is a multifactorial process for which no scientifically proven cause has yet been identified.»)
is generalizing, misleading («no scientifically proven cause»), and therefore completely out of place.
#ProtectTheKids calls on the Swiss media and science journalists to refrain in the future, for the sake of credibility, from making statements such as «it is not known with certainty whether the disease / Long Covid really has an explainable cause», after several pathophysiological mechanisms of Long Covid have been substantiated in studies.
We leave it to our readers to form their own impression of the current state of knowledge about the pathophysiology, the risks associated with reinfections and the diverse courses of the disease based on the following quotes from a first-class review on Long Covid (Al-Aly, Davis et al., 2024):
«Long COVID is a complex, multisystem disorder that affects nearly every organ system, including the cardiovascular system, the nervous system, the endocrine system, the immune system, the reproductive system and the gastrointestinal system. It affects people across the age spectrum (from children to older adults), people of different race and ethnicities, sex and gender, and baseline health status.»
«Reinfection (..) is a risk factor for long COVID; even if individuals did not experience long COVID after a first SARS-CoV-2 infection, they remain at risk of developing it with subsequent infections. Reinfection can trigger de novo long COVID or exacerbate the severity of existing long COVID. Cumulatively, two infections yield a higher risk of long COVID than one infection and three infections yield a higher risk than two infections.»
«Studies evaluating recovery from long COVID are sparse and inconsistent; this is largely due to use of various definitions, incomplete accounting for all the manifestations of long COVID and misclassification of remission as ‘recovery’. However, studies carefully evaluating individual manifestations (i.e., postacute sequelae of COVID-19, PASC) show that recovery rates are generally low at 1 year, and several studies show only 7–10 % fully recovered at 2 years. Furthermore, some manifestations of long COVID, including heart disease, diabetes, myalgic encephalomyelitis and dysautonomia are chronic conditions that last a lifetime.»
Long COVID science, research and policy
Ziyad Al-Aly, Hannah Davis et al. (2024). Nature Medicine 30, 16 April 2024.
In a study of children with Long Covid who showed symptoms such as chronic fatigue, post-exertional malaise (PEM) and neurocognitive problems, platelet hyperactivation was demonstrated (Buonsenso et al., 2024). Platelet activation can both contribute to endothelial dysfunction and be an expression of systemic inflammation involving endothelial cells, blood cells and coagulation.
Acute Covid-19 is highly inflammatory. In addition to neuroinflammation, blood-brain barrier dysfunction has been observed in individuals with brain fog due to Long Covid (Al-Aly, Davis et al., 2024).
ME/CFS have been known for decades. Although ME (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) are often referred to together, there are differences and similarities between these conditions. CFS and ME, which are also considered a severe and particularly severe form of Long Covid, can be triggered by a variety of viral and bacterial pathogens. However, the fact that they can be provoked by SARS-CoV-2 shows that we would be much further ahead today if we had started researching ME/CFS years ago instead of psychologizing the disease.
As Long Covid is a new disease (with a new pathogen),
«longitudinal studies to characterize the long-term health trajectories of people with long COVID – up to 10 years, 20 years and 30 years – are needed, to understand rates and predictors of recovery and relapse of the various manifestations. These long-term studies will also help identify any latent consequences of the disease (that is, impacts that have not yet been realized) and secondary consequences (for example, the downstream health effects that emanate from long COVID). For example, understanding whether people with cognitive dysfunction (or brain fog) are at a higher risk of developing neurodegenerative diseases later in life is critical.» (Al-Aly, Davis et al., 2024)
In light of these findings, it is imperative that the precautionary principle be applied to children and adolescents.