Long Covid Land Toolbox
The double invisibility of Long Covid in children
Highlights
- Little public attention has been paid to Long Covid, particularly in children.
- Covid was publicly represented as mild, not affecting children, and ‘over’ by 2022.
- The invisibility of Long Covid means it receives poor social currency.
- Children face a ‘double invisibility’ due to their age and associated stereotypes.
The Covid-19 pandemic has been dominated by discussions of mild and short-lasting cases or acutely serious or lethal forms of the disease; less attention has been paid to long-term Covid-19 symptoms (‘Long Covid’), particularly in children. This analysis of the experiences of children and adolescents with Long Covid, and those of their parents/caregivers, argues that children with Long Covid encounter a ‘double invisibility’ due to the condition’s limited social currency and their status as the youngest members of society. We draw on 39 narrative interviews about children’s and adolescents’ experiences, conducted in 2021–2022 in the United Kingdom. The occurrence of Long Covid in children challenges key aspects of a dominant pandemic narrative, some of which have persisted from the early stages of the pandemic into 2023…
First wave of COVID-19 increased risk of heart attack, stroke up to three years later
NIH-funded study focused on original virus strain, unvaccinated participants during pandemic.
Infection from COVID-19 appeared to significantly increase the risk of heart attack, stroke, and death for up to three years among unvaccinated people early in the pandemic when the original SARS-CoV-2 virus strain emerged, according to a National Institutes of Health (NIH)-supported study. The findings, among people with or without heart disease, confirm previous research showing an associated higher risk of cardiovascular events after a COVID-19 infection but are the first to suggest the heightened risk might last up to three years following initial infection, at least among people infected in the first wave of the pandemic.
Compared to people with no COVID-19 history, the study found those who developed COVID-19 early in the pandemic had double the risk for cardiovascular events, while those with severe cases had nearly four times the risk. The findings were published in the journal Arteriosclerosis, Thrombosis, and Vascular Biology.
Long Covid Perspectives: history, paradigm shifts, global challenges
Elisa Perego (MA, PhD) University College London (UK)
The Covid-19 pandemic is one of the most devastating health disasters in recorded history. In addition to the significant death toll, the pandemic is leaving behind a devastating long tail of prolonged disease and disability. The long-term symptoms, clinical signs and sequelae of SARS-CoV-2 infection are collectively known as Long Covid – a patient-made term that was created and gained consistency in just a few months in Spring to Summer 2020. Long Covid was openly recognized by the World Health Organization (WHO) in August 2020, following intense advocacy by Covid-19 survivors. Long Covid has been described as the first illness identified, named and defined by patients finding one other on social media such as Twitter. As a disease entity named and defined collectively by patients, Long Covid has the potential to change knowledge building in medicine, while centring patient expertise within the biomedical community.
This paper will, first, explore the rise of Long Covid as patient-made term, clinical entity and collective, grassroots, international advocacy–research movement in early 2020 and beyond. This happened while people with Covid-19 suffered abandonment and lack of care in the pandemic’s disaster context. Second, I will discuss some key paradigm shifts triggered by this ground-breaking patient-driven, collective advocacy–research, while sketching links with earlier patient movements, such as around HIV/AIDS. Then, I will explore the role of Long Covid advocacy–research in our digital era. This advocacy took place during a pandemic when digital spaces such as Twitter and Facebook were often the only arenas available to Covid-19 survivors. Moreover, I will raise some pressing issues around epistemic injustice in relation to the use of patient-produced data and the recognition of patient contributions to knowledge. Finally, I will address the need to fully acknowledge the nature, scope, and severity of Long Covid, which is detailed in thousands of scientific publications, including in relation to the ongoing spread of SARS-CoV-2.
I Feel Lousy: Could This Be Long COVID?
In the aftermath of COVID-19 infections—even if you weren’t aware of having one—many people find themselves grappling with lingering symptoms that don’t quite add up. You may feel fatigued, struggle with brain fog, experience shortness of breath, or notice a rapid heart rate after minimal exertion. If you’ve asked yourself, Could this be Long COVID?—you’re not alone.
What Is Long COVID?
Long COVID, also known as Post-Acute Sequelae of SARS-CoV-2 (PASC), refers to a range of symptoms linked to underlying physiological harm that persist after the acute phase of a COVID-19 infection has resolved. While COVID-19 is often thought of as a respiratory illness, the infection impacts blood vessels and many tissues, with effects that can persist in multiple locations in the body. This means that COVID-19 is a systemic disease, affecting multiple organs and bodily systems.
Long COVID symptoms can include, but are not limited to [Find a more comprehensive list of Long COVID symptoms here]:
- Fatigue: Unrelenting, debilitating tiredness that doesn’t improve with rest.
- Brain fog: Difficulty concentrating, memory lapses, and confusion.
- Breathing issues: Persistent shortness of breath or chest tightness.
- Heart problems: Palpitations or a rapid heart rate.
- Muscle and joint pain: Unexplained aches and stiffness.
- Neurological symptoms: Headaches, dizziness, or sleep disturbances.
- Gastrointestinal issues: Nausea, diarrhea, or abdominal pain.
- Immunological issues: Vulnerability to other infections, and heightened sensitivity to allergens or new allergies.
- Emotional challenges: Anxiety, depression, or atypical mood swings resulting from neurological and physical damage.
LONG COVID WEB
A network supporting and conducting research into the Post-COVID Condition (PCC)
Nearly 15% of long-COVID patients have cardiovascular symptoms, most often chest pain
A meta-analysis of 37 studies involving 3 million people suggests that those with long COVID are much more likely to experience chest pain, heart palpitations, and high blood pressure than their uninfected counterparts.
For the analysis, published late last week in BMC Medicine, researchers from Central South University in Hunan, China, systematically reviewed literature on high blood pressure, palpitations, and chest pain published up to March 17, 2024. Study sample sizes ranged from 60 to 2.4 million, with follow-up periods of 3 to 12 months.
“Emerging evidence indicates that COVID-19 may lead to post-acute COVID-19 syndrome (PACS) with cardiovascular implications, potentially driven by factors such as ACE2 interaction with viruses, systemic inflammation, and endothelial dysfunction,” the researchers wrote. “However, there remains a limited amount of research on the cardiovascular manifestations of PACS, which may delay the development of optimal treatment strategies for affected patients.”
Targeting the SARS-CoV-2 reservoir in long COVID
There are no approved treatments for post-COVID-19 condition (also known as long COVID), a debilitating disease state following SARS-CoV-2 infection that is estimated to affect tens of millions of people. A growing body of evidence shows that SARS-CoV-2 can persist for months or years following COVID-19 in a subset of individuals, with this reservoir potentially driving long-COVID symptoms or sequelae. There is, therefore, an urgent need for clinical trials targeting persistent SARS-CoV-2, and several trials of antivirals or monoclonal antibodies for long COVID are underway. However, because mechanisms of SARS-CoV-2 persistence are not yet fully understood, such studies require important considerations related to the mechanism of action of candidate therapeutics, participant selection, duration of treatment, standardisation of reservoir-associated biomarkers and measurables, optimal outcome assessments, and potential combination approaches. In addition, patient subgroups might respond to some interventions or combinations of interventions, making post-hoc analyses crucial. Here, we outline these and other key considerations, with the goal of informing the design, implementation, and interpretation of trials in this rapidly growing field. Our recommendations are informed by knowledge gained from trials targeting the HIV reservoir, hepatitis C, and other RNA viruses, as well as precision oncology, which share many of the same hurdles facing long-COVID trials.
Welcome to the Long COVID Resource
The COVID-19 pandemic has led to a widespread occurrence of Long COVID, a condition that significantly impacts health, daily life, and overall well-being. Long COVID, also referred to as post-acute sequelae of SARS-CoV-2 infection (PASC), affects a broad spectrum of people, irrespective of the initial severity of their COVID-19 infection.
The Long COVID Resource is dedicated to providing information and resources on Long COVID. We are committed to ensuring that individuals who are experiencing prolonged symptoms following a COVID-19 infection have access to the information and support they need. We recognize the profound challenges faced by individuals living with ongoing symptoms after recovering from the initial infection.
Beyond a simple list of facts, we strive to empower you with knowledge and tools to navigate this complex condition. Whether you’re recently diagnosed, struggling with persistent symptoms, or seeking support for a loved one, our website offers a safe harbor and a wealth of resources.
At Long Covid Resource, we’re committed to:
- Providing accurate and up-to-date information based on the latest scientific findings.
- Continuously expanding our resources to reflect the evolving landscape of research and support.
- Empowering you with the knowledge and tools to manage your Long COVID journey with confidence.