Children and Young People
We are Here to Help, Guide and Support.
This page contains supportive information for children and young people living with Long Covid or related conditions, including Myalgic Encephalomyelitis (ME), Postural Tachycardia Syndrome (PoTS), or Paediatric Acute-onset Neuropsychiatric Syndrome (PANS).
Whether you’ve received a diagnosis or are still trying to make sense of your symptoms, or you're here because someone close to you is unwell , you are not alone.
This page has lot's of support and information to help you feel understood and connected.
Awareness
The Numbers
The most recent research (2020–2024) shows that around 4 in every 100 children.
If you are experiencing this, it’s likely you are not alone, many others your age are going through the same thing.
There is support that can help you manage your symptoms and make you feel better over time.
If you, or someone you care about, is experiencing symptoms, there are others who understand, and support is available.
Resources to Share:
An Educational Toolkit - a series of videos aimed at raising awareness of the challenges that young people with Long Covid experience accessing education.
Please do share the link with your school.
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This short video from Long Covid Kids was produced with young people with lived experience of Long Covid. It can help your friends understand Long Covid - 'Long Covid and Me'.
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WHO Awareness Leaflet including a letter you can share with your friends.
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Long COVID Physio created a series of educational videos about Long Covid.
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The Long COVID Video Series is translated into Arabic, Bahasa Indonesia, Bangla, Brazilian Portuguese, French, German, Italian, Mandarin (Simplified Chinese), and Spanish.
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Long Covid Kids Support Guide, has lots of useful information.
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Support
For Teens (Aged 13+)
Chat, connect, and get involved with others who get it.
Scroll through our support services for teens below:
Youth Choir
Run by Merel van der Knoop, an experienced vocal coach with direct experience of Long Covid.
Weekly Peer Led Zoom Sessions
Run by Youth Volunteers with lived experience of Long Covid who have undertaken an enhanced DBS check.
Youth Advisory Panel
An opportunity for children and young people to influence current and future LCK Projects. Meets the first saturday of each month 5-6pm.
Moderated Discord Server
A secure online platform where teens (aged 13-17) can chat, share experiences, and find peer support in a safe environment.
For more information click here.
For Children & Young People of all Ages
Connect, laugh, breathe and sing with others who get it.
Our choir is for you and your friends.
Online Choir
an experienced vocal coach with direct experience of Long Covid.
Further Support and Information
Who is this for?
Children and Young People seeking further support resources.
Kooth – Free, safe, and anonymous online mental health support for young people aged 10-25. Visit Kooth
The Mix – A helpline and live chat service for young people aged 10-25. Call 0808 808 4994 or visit The Mix
Young Minds Textline – 24/7 free text support for mental health worries. Text YM to 85258 for confidential help.
Child Helpline International – Directory of helplines available in different countries for young people seeking emotional support. Find a helpline near you
Research
We Support Research Projects
Did you know that Long Covid Kids supports research projects in the U.K and around the world?
Research helps doctors and scientists understand how much Long Covid effects some one, and what is happening in the body. Research helps find better treatments, and improve support for children and young people with Long Covid.
Every research study adds an important piece to the puzzle.
Doctors and researchers are continuing to learn about Long Covid in children and young people. Because there is still so much to understand, more funding and research are needed.
Research FAQ's
At LCK, we work with researchers to help young people and families with lived experience get involved in shaping research.
We help makes sure that the researchers have involved enough young people, with a variety of lived experience, in their project.
Through Patient and Public Involvement (PPI), we support projects so that children, parents, and carers with lived experience can help design, produce, and evaluate studies and services.
Getting involved in research helps make sure doctors and scientists really understand Long Covid and what it’s like to live with it as a child or young person.
When children, young people, and families share their experiences, it gives researchers information they could never get from tests or numbers alone.
This lived experience helps shape studies, improve treatments, and design better support in schools, at home, and in healthcare.
By being part of research, you can help make sure that new care and support systems are truly fit for purpose; and meet the real needs of children, young people, and their families.
PPI stands for Patient and Public Involvement.
This means doctors and researchers don’t just study children and families with Long Covid, they work alongside them.
By listening to young people and parents, researchers can make sure their studies ask the right questions and lead to changes that actually help in real life.
With PPI, children, young people, and families might:
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share what it feels like to live with Long Covid,
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give feedback on what support would really make a difference at school, home, or in healthcare,
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help researchers design studies that are easier for young people to take part in,
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or check if services being developed truly meet the needs of families.
In short, PPI means research is done with children and families, not just about them. It helps turn lived experience into real improvements in care, education, and support.
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Lived experience means the knowledge and understanding you have from actually going through something yourself.
For example, if you have Long Covid, you might know what it feels like to be tired all the time, or what different symptoms feel like, how it feels to miss school, or the challenges to explaining Long Covid to your friends. That personal experience is different from what a doctor or teacher might read in a textbook, it’s real life.
That is is your lived experience.
Sharing lived experience helps doctors, teachers, and researchers understand what really matters, so they can make better choices about care and support.
Action
Advocacy and Youth Voice
Your voice is powerful.
There are lots of ways you can use your experience to help make a difference. Long Covid Kids works with organisations and partners to make sure children and young people’s voices are heard at the highest level.
By getting involved, you can help improve the support and understanding for everyone living with Long Covid and related conditions.
Here are some ideas:
Self-Advocacy Tools - get creative & use the resources to encourage people to listen & give you the confidence to explain your needs confidently.
Educate your school & community by sharing the resources.
Write to your MP about Long Covid
Shop to support - Stickers, T-Shirts and more.
(Proceeds help fund youth-led projects & awareness campaigns)
Volunteer to help with projects
Join our Youth Advisory Panel and guide LCK
Get involved in media opportunities
Share your lived experience with LCK
Other Ways to Support Long Covid Kids
To help us make a difference to more children and young people, donate today
Your donation will help us plan future projects; a helpline for overwhelmed families seeking support, online play therapy sessions for younger children, resources, fact sheets and more.
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Become a WEBSITE member using your name and email address. You can do this HERE.
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Check your inbox/spam folder for an email.
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Click the button in the email to complete the registration and consent form. Complete the form in full.
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Receive your 'Confirmation' email and login to access our support services.
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Login using the LOGIN button at the top of the website. Once you have logged in you can visit the ChatBox Members Page to view the forum and start chatting.
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Visit your website profile to add your photo, edit your notification preference and use our support services any time.
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Please check you are logged into the website. To check that you are logged in, make sure you can see your name/profile showing in the top bar of the website.
When you are logged in, you can edit your notification preferences.
For ongoing troubleshooting issues please contactsupportsevices@longcovidkids.org for support.
LCK take the safeguarding of children and young people seriously and requires each person using our services to complete the registration process. This helps us to adhere to our Safeguarding Policy.
We are Inclusive
We believe in mutual respect, dignity, fairness, care and equality.
We welcome and support all children, young people, their families and caregivers, from every community, without exception.
We recognise the challenges families can face in obtaining a diagnosis and welcome members who have changes to their health following a suspected or confirmed COVID-19 infection.