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Reposted by Long Covid Families

Long Covid Families @longcovidfam.bsky.social · 8d

New Lancet Study: 2x Risk of Long COVID After Reinfection

Risks of other serious outcomes also rise sharply.

This is not a “mild” illness when it rewrites a child’s future. We need research, medical care, and school protections that match the scale of the problem.

#LongCOVID

Long COVID associated with SARS-CoV-2 reinfection among children and adolescents in the omicron era (RECOVER-EHR): a retrospective cohort study

Children and adolescents face a significantly higher risk of various PASC outcomes after reinfection with SARS-CoV-2. These findings add to previous evidence linking paediatric long COVID to multisyst...

www.thelancet.com

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Long Covid Families @longcovidfam.bsky.social · 8d

New Lancet Study: 2x Risk of Long COVID After Reinfection

Risks of other serious outcomes also rise sharply.

This is not a “mild” illness when it rewrites a child’s future. We need research, medical care, and school protections that match the scale of the problem.

#LongCOVID

Long COVID associated with SARS-CoV-2 reinfection among children and adolescents in the omicron era (RECOVER-EHR): a retrospective cohort study

Children and adolescents face a significantly higher risk of various PASC outcomes after reinfection with SARS-CoV-2. These findings add to previous evidence linking paediatric long COVID to multisyst...

www.thelancet.com

3 40 70

Long Covid Families @longcovidfam.bsky.social · 15d

Thank you, Violet Affleck, for using your voice at the United Nations to call for clean air and masking — and especially for naming children with #LongCOVID. Too often, kids are left out of these conversations. Families are grateful to see their children’s realities recognized on the global stage.

Violet Affleck, Ben Affleck and Jennifer Garner’s Daughter, Speaks About the Impacts of COVID in U.N. Address

Violet Affleck, the daughter of Ben Affleck and Jennifer Garner, delivered an impassioned speech in favor of clean air and masking to prevent the transmission of long COVID-19 in an address at the Uni...

people.com

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Reposted by Long Covid Families

Dr. Lucky Tran @luckytran.com · 16d

“We are told by leaders that we are the future. But when it comes to the ongoing pandemic, our present is being stolen right in front of our eyes.”

Incredible speech by Violet Affleck who warned about the ongoing dangers of COVID & Long Covid, & advocated for masks and clean air at the UN today!

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Reposted by Long Covid Families

Long Covid Families @longcovidfam.bsky.social · 16d

Brain scans show #COVID can alter children’s development. Areas tied to language and listening sometimes improve with time. But changes in memory, emotions, and focus persist. Families say reinfections can wipe out recovery. Prevention matters. Kids must be included in research and care.

Brain Microstructural Alterations in Children Post‐COVID‐19 Infection Through VBM, SBM, and Structural Covariance Network Analysis

Background Children represent a particularly vulnerable group to the long-term consequences of COVID-19 due to their ongoing neurodevelopment. This study aimed to identify transient and persistent s...

onlinelibrary.wiley.com

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Long Covid Families @longcovidfam.bsky.social · 16d

If you are concerned about this research, please consider sending Congress a letter. actionnetwork.org/letters/tell...

Tell Congress: Urge HHS to Include Children in Long COVID Action

he Department of Health and Human Services recently announced new commitments on Long COVID. They described these as action sessions focused on diagnosis, prevention, and treatment, and promised a sus...

actionnetwork.org

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Reposted by Long Covid Families

✨void screaming🪐 @orchidtreks.bsky.social · 16d

Very concerned that we still don’t know much about the long term effects of this horrific virus

Long Covid Families @longcovidfam.bsky.social · 16d

Brain scans show #COVID can alter children’s development. Areas tied to language and listening sometimes improve with time. But changes in memory, emotions, and focus persist. Families say reinfections can wipe out recovery. Prevention matters. Kids must be included in research and care.

Brain Microstructural Alterations in Children Post‐COVID‐19 Infection Through VBM, SBM, and Structural Covariance Network Analysis

Background Children represent a particularly vulnerable group to the long-term consequences of COVID-19 due to their ongoing neurodevelopment. This study aimed to identify transient and persistent s...

onlinelibrary.wiley.com

4 12

Long Covid Families @longcovidfam.bsky.social · 16d

Brain scans show #COVID can alter children’s development. Areas tied to language and listening sometimes improve with time. But changes in memory, emotions, and focus persist. Families say reinfections can wipe out recovery. Prevention matters. Kids must be included in research and care.

Brain Microstructural Alterations in Children Post‐COVID‐19 Infection Through VBM, SBM, and Structural Covariance Network Analysis

Background Children represent a particularly vulnerable group to the long-term consequences of COVID-19 due to their ongoing neurodevelopment. This study aimed to identify transient and persistent s...

onlinelibrary.wiley.com

4 29 60

Long Covid Families @longcovidfam.bsky.social · 16d

Thank you so much for your message. Every word of support strengthens this movement for kids with LC and the people who care about them. We’re grateful to stand together in this work.

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Long Covid Families @longcovidfam.bsky.social · 16d

A community member’s letter already got a response from a staffer. If you haven’t sent yours yet, now is the moment. Every letter adds pressure and keeps kids in the conversation.

Long Covid Families @longcovidfam.bsky.social · 17d

Nearly six million kids in the U.S. are living with Long COVID. HHS just announced new commitments — but children weren’t mentioned.

If kids aren’t named, they risk being excluded from research, care, and policy.

Tell Congress: Children must be part of every Long COVID action.

Tell Congress: Urge HHS to Include Children in Long COVID Action

he Department of Health and Human Services recently announced new commitments on Long COVID. They described these as action sessions focused on diagnosis, prevention, and treatment, and promised a sus...

actionnetwork.org

2 5

Long Covid Families @longcovidfam.bsky.social · 17d

Nearly six million kids in the U.S. are living with Long COVID. HHS just announced new commitments — but children weren’t mentioned.

If kids aren’t named, they risk being excluded from research, care, and policy.

Tell Congress: Children must be part of every Long COVID action.

Tell Congress: Urge HHS to Include Children in Long COVID Action

he Department of Health and Human Services recently announced new commitments on Long COVID. They described these as action sessions focused on diagnosis, prevention, and treatment, and promised a sus...

actionnetwork.org

3 9

Reposted by Long Covid Families

Long Covid Families @longcovidfam.bsky.social · 20d

Six million children live with Long COVID. HHS announced new steps, but kids must be clearly included in every plan.

Here’s why pediatric research and policy cannot wait:
🔗 longcovidfamilies.org/children-mus...

#PediatricLongCOVID #LongCOVID

Children Must Be Part of Every Long COVID Plan

Long Covid Families supports those who have been affected by Post Viral Illness due to Covid-19 infection.

longcovidfamilies.org

2 11 27

Long Covid Families @longcovidfam.bsky.social · 20d

Six million children live with Long COVID. HHS announced new steps, but kids must be clearly included in every plan.

Here’s why pediatric research and policy cannot wait:
🔗 longcovidfamilies.org/children-mus...

#PediatricLongCOVID #LongCOVID

Children Must Be Part of Every Long COVID Plan

Long Covid Families supports those who have been affected by Post Viral Illness due to Covid-19 infection.

longcovidfamilies.org

2 11 27

Reposted by Long Covid Families

Long Covid Families @longcovidfam.bsky.social · 23d

A child keeps losing their place reading, complains of headaches, struggles with memory. Teachers may see distraction, but a new study shows brain changes months after COVID. Symptoms: headaches, dizziness, attention & memory issues, mood shifts, sleep trouble. This is #pediatricLongCOVID.

Long-term influence of pediatric long COVID syndrome on the visual perception and neuropsychiatric symptoms

Long COVID presents with a wide range of persistent symptoms and durations following COVID-19 infection. However, data on children and adolescents remain limited. This study aims to explore visual per...

www.pedneur.com

9 8

Long Covid Families @longcovidfam.bsky.social · 23d

A child keeps losing their place reading, complains of headaches, struggles with memory. Teachers may see distraction, but a new study shows brain changes months after COVID. Symptoms: headaches, dizziness, attention & memory issues, mood shifts, sleep trouble. This is #pediatricLongCOVID.

Long-term influence of pediatric long COVID syndrome on the visual perception and neuropsychiatric symptoms

Long COVID presents with a wide range of persistent symptoms and durations following COVID-19 infection. However, data on children and adolescents remain limited. This study aims to explore visual per...

www.pedneur.com

9 8

Long Covid Families @longcovidfam.bsky.social · 29d

• Focus on which symptoms link most with persistence
• Consider targeted therapies for those with clear evidence of viral persistence

Long Covid Families @longcovidfam.bsky.social · 29d

The first round of clinical trials targeting viral persistence did not succeed. That doesn’t mean the science is dead—it means we need better tools.
Next steps:
• Build stronger lab tests to detect viral persistence
• Study persistence across different COVID eras and variants

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Long Covid Families @longcovidfam.bsky.social · 29d

• Study persistence across different COVID eras and variants
• Focus on which symptoms link most with persistence
• Consider targeted therapies for those with clear evidence of viral persistence

2

Long Covid Families @longcovidfam.bsky.social · 29d

Threads
The first round of clinical trials targeting viral persistence did not succeed. That doesn’t mean the science is dead—it means we need better tools.
Next steps:
• Build stronger lab tests to detect viral persistence

1 2

Long Covid Families @longcovidfam.bsky.social · 29d

Researchers are still debating viral persistence in Long COVID:
• Do viral fragments drive symptoms?
• Are signals consistent across patients?
• Which symptoms are tied most closely to persistence?

These questions will shape what treatments might work.

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Long Covid Families @longcovidfam.bsky.social · 29d

Researchers see viral fragments lingering in some people after COVID. But that doesn’t prove they cause Long COVID. Many with fragments don’t get sick, and many who are sick don’t have fragments. More research needed.

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Long Covid Families @longcovidfam.bsky.social · 29d

Dr. Janko Nikolich, chair of pathology: We are close to Long COVID biomarkers, but some foundational questions remain.

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Long Covid Families @longcovidfam.bsky.social · 29d

Biomarkers link lab results to real clinical decisions. They help answer:

Who is at risk?

Who has the disease?

Who will get worse?

Is treatment safe?

Is treatment working?

This is how research translates into care.

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Long Covid Families @longcovidfam.bsky.social · 29d

Dr. Steven Deeks was asked if the VIPER biomarker study could extend to pediatrics. He said yes its possible— especially for adolescents. That possibility matters for families who have waited too long for kids to be included in research.

Long Covid Families @longcovidfam.bsky.social · 29d

He presented the VIPER study — designed to find out which biomarker tests can really prove viral persistence.

1️⃣ Recruit 150 participants, collect blood/saliva/stool/tissue
2️⃣ Test samples with the most promising biomarker methods
3️⃣ Blind analysis for rigor
4️⃣ Compare results to tissue “ground truth”

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