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Long Covid Kids

@longcovidkids.bsky.social
5.1K followers 674 following 1.4K posts

The charity supporting & advocating for children & young people with Long Covid & overlapping illness. #LongCovidKids #LongCovid #PaediatricLongCovid #LongCovidAwareness #MECFS

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Long Covid Kids @longcovidkids.bsky.social · 02/10/2026
Growing up with Long COVID—Risk factors and #school impacts RECOVER #researchers and caregivers shared insights into Long COVID social risk factors and how #LongCovid affects children’s learning and school experiences - inc what next. recovercovid.org/r3-seminar-s... @rachelgross-md.bsky.social
recovercovid.org
Growing up with Long COVID—Risk factors and school impacts
Findings from RECOVER’s pediatric observational study show that Long COVID can affect children’s health and daily lives in different ways. During the September 15, 2026, RECOVER Research Review (R3) S...
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Dr Ben King 🌍 @benking01.bsky.social · 02/10/2026
Many children have #LongCovid too. @longcovidkids.bsky.social does a great job raising awareness of this growing problem. youtu.be/e0U7K54RiSg?...
youtu.be
Long Covid & Me | Understanding Long Covid In Children And Young People
YouTube video by Long Covid Kids
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Long Covid Kids @longcovidkids.bsky.social · 02/10/2026
In this video, children and young people with lived experience of Long Covid share how the illness affects their everyday lives, helping others understand what it can feel like to live with Long Covid. www.youtube.com/watch?v=e0U7... #LongCovidandMe #LongCovid #PEM #LongCovidKids
youtube.com
Long Covid & Me | Understanding Long Covid In Children And Young People
YouTube video by Long Covid Kids
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Long Covid Kids @longcovidkids.bsky.social · 29/09/2026
🧡 A little bit of LCK orange is heading to #WOY2026. We’re delighted that our Founder and CEO, Sammie McFarland, has been invited to this year’s Women of the Year Lunch and Awards. Since founding LCK in 2020, Sammie has advocated alongside children, young people, families & colleagues
Graphic from Women of the Year featuring a photograph of Sammie McFarland. Text reads: “I am a 2026 Woman of the Year. Celebrating extraordinary women since 1955.” Women of the Year logo and sponsor logos appear on the graphic.
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Long Covid Kids @longcovidkids.bsky.social · 25/09/2026
“Look beyond absence. See the child living with Long Covid.” We’re really pleased to share that Long Covid Kids & Friends is featured by the National Attendance Portal. longcovidfeature.netlify.app #LongCovidKids #LongCovid #SchoolAttendance #InclusiveEducation #ChildHealth #MedicalNeeds
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Long Covid Kids @longcovidkids.bsky.social · 24/09/2026
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed. @georgemonbiot.bsky.social www.theguardian.com/commentisfre... #ME #LongCovid
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Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 23/09/2026
If a child or young person in your life (in the UK) has long COVID and they need support, please reach out to @longcovidkids.bsky.social. If you know of support groups for children and young people for other post-acute infection syndrome, please link in the comments 🙏🏻
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Long Covid Kids @longcovidkids.bsky.social · 22/09/2026
Congratulations to @profmarkfaghy.bsky.social, LCK Trustee, and his research team. The ERASE_LC trial evaluated whether a 5-day course of intravenous remdesivir is feasible, safe, and acceptable for people living with Long COVID. (Adults) #LongCovid #Remdesiver
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Long Covid Kids @longcovidkids.bsky.social · 20/09/2026
So much work has gone into this project to make sure it’s accessible. You can listen or watch, as well as read. Check out the narrated Long Covid Superhero’s comic here: youtu.be/IAspWRcpFAk?... #Dreamweavers #LongCovid
youtu.be
Long Covid Superheroes: The DreamWeavers illustrated by Alice Urbino
YouTube video by Alchemise Theatre
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Long Covid Kids @longcovidkids.bsky.social · 18/09/2026
Standing together against stigma and disbelief. Long Covid Kids has joined fellow members of the Overlapping Illness Alliance in writing to The Telegraph about “How having a disability became cool.” Complex illness deserves evidence and curiosity, not suspicion. 🧡 #LongCovid #Disability
Overlapping Illness Alliance graphic featuring a black-and-white group photograph of representatives from member organisations, including a wheelchair user. Text reads: “Standing together against stigma and disbelief. Our joint response to The Telegraph.” The Overlapping Illness Alliance logo appears at the top.
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Long Covid Kids @longcovidkids.bsky.social · 15/09/2026
📔 date. 7th October. We are pleased to be supporting the Norfolk & Waveney Long Covid and ME/CFS group in October. Join the group and Kirsty Stanley OT LIVE on the day. @kirstyes.bsky.social #LongCovid #MECFS #Norfolk #Waveney
Kirsty Stanley, the Health Lead and Senior Occupational Therapist from Long Covid Kids. This is our first presentation from LCK, and Kirsty brings over 25 years' experience in academia, private practise, professional environments, and lived experiences of disability and chronic health conditions, including Long Covid.
This is a must-attend event for children and young people, parents, grandparents, carers and educators alike. So, join us LIVE on the day.
Kirsty will be delivering her presentation, Long Covid Kids - supporting children, young people and families - your questions answered.

Easy Meeting Joining Options (updated 21.08.26)

To join any of our monthly educational Get Togethers or our twice-monthly Coffee & Chat Drop Ins, you can use the following options:

100% Failsafe Meeting Joining: Is this the full Zoom address or the Zoom Meeting ID.

https://us02web.zoom.us/j/82982756448

Zoom Meeting ID: 829 8275 6448
Password: 369209
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Tom Kindlon @tomkindlon.bsky.social · 14/09/2026
Long Covid Kids @longcovidkids.bsky.social have developed resources for children and parents including an Individual Healthcare Plan (IHCP) template, available for download as Word or PDF www.longcovidkids.org/download-res... Screenshot from Science for ME update #LongCovid #LongCovidKids #PASC
UK Long Covid Kids have developed resources for children and parents including an Individual Healthcare Plan (IHCP) template, available for download as Word or PDF. It is intended to be filled in for each child with long Covid or related conditions to provide schools with information about the child's needs for adjustments and support at school.
Website with links | Thread
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Long Covid Kids @longcovidkids.bsky.social · 13/09/2026
Deadline 9pm tomorrow! Please keep your entires coming in, they are bringing so much joy and will be used to raise awareness of paediatric Long Covid. We have received a wide range of ideas, it is going to be tough for our trustees to choose! #win #competition
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Long Covid Kids @longcovidkids.bsky.social · 09/09/2026
3/7 Long Covid was associated with substantially worsened grades. Age 6–11: 18% vs 7% Age 12–17: 29% vs 11% Children with Long Covid were more than twice as likely to be reported as having substantially worsened grades.
Bar chart comparing substantially worsened grades in children with Long Covid and comparison groups. Among ages 6–11, 18% with Long Covid compared with 7% of the comparison group. Among ages 12–17, 29% with Long Covid compared with 11% of the comparison group. Children with Long Covid were more than twice as likely to be reported as having substantially worsened grades. Source: Reeder et al., Academic Pediatrics, 2026.
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Long Covid Kids @longcovidkids.bsky.social · 09/09/2026
.🧵 1/7 When Long Covid affects a child’s education, attendance is only part of the story. As a new school year begins, new research looks beyond whether children are present in school, to learning, attention and friendships. #Education #InclusiveEducation #Attendance
Long Covid Kids graphic. “When Long Covid affects a child’s education, attendance is only part of the story.” New research looks at the impact on learning, attention and friendships.
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Long Covid Kids @longcovidkids.bsky.social · 09/09/2026
.🧵 1/7 When Long Covid affects a child’s education, attendance is only part of the story. As a new school year begins, new research looks beyond whether children are present in school, to learning, attention and friendships. #Education #InclusiveEducation #Attendance
Long Covid Kids graphic. “When Long Covid affects a child’s education, attendance is only part of the story.” New research looks at the impact on learning, attention and friendships.
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Long Covid Kids @longcovidkids.bsky.social · 01/09/2026
1/4 🎒 How will school know what my child needs when their health changes day to day? For children with Long Covid and other prolonged, fluctuating and energy-limiting illnesses, the support they need at school may change too. An Individual Healthcare Plan can help. 🧵 #BackToSchool #LongCovidKids
Long Covid Kids graphic asking: ‘How will school know what my child needs when their health changes day to day?’ Below: ‘An Individual Healthcare Plan can help.
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Long Covid UK @longcoviduk.bsky.social · 28/08/2026
We're very proud of our trustee and research co-lead, Dr Margaret O'Hara, who is attending the ISLC PAIS Conference on behalf of us, the Episodic Disability Study Team (Toronto University) & the Rehabilitation Science Research Network for COVID, in Amsterdam this week 🥳
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Long Covid Kids @longcovidkids.bsky.social · 21/08/2026
Read Bethan's #blog and what the meeting means to her. www.longcovidkids.org/post/paediat... #YouthAdvocacy #LongCovidKids #LongCovid #APPG
longcovidkids.org
“It shouldn’t take 6 years to get listened to for the first time”.
The APPG on paediatric Long Covid brought together young people’s testimony, clinical expertise and evidence gathered by Long Covid Kids through six years of supporting children and families. This bl...
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Long Covid Kids @longcovidkids.bsky.social · 21/08/2026
“It shouldn’t take 6 years to get listened to for the first time.” Kitty shared her experience of growing up with Long Covid at the APPG on Long Covid. www.longcovidkids.org/post/paediat... #LongCovidKids #LongCovid #Childhood
"It shouldn't take 6 years to get listened to for the first time" Kitty McFarland
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Long Covid Kids @longcovidkids.bsky.social · 21/08/2026
“It is particularly important to me that our voices are heard by those who have the power to influence change.” Bethan, diagnosed at 16, now 21, reflects on the APPG on #LongCovid & why young people’s voices need to be heard. Read her account 👇 www.longcovidkids.org/post/paediat... #LongCovidKids
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Long Covid Kids @longcovidkids.bsky.social · 20/08/2026
1/4 Results Days 2026 🎓 Today, many young people are receiving results and thinking about what comes next. For those navigating Long Covid or overlapping illness alongside education, reaching this point may represent far more than any set of grades can show. 🧡 #ResultsDay #LongCovid
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Long Covid Kids @longcovidkids.bsky.social · 19/08/2026
📢 We’re delighted that Long Covid Kids and Friends has been awarded £5,000 from the St James’s Place Charitable Foundation to explore the impact of #LongCovid on #children in Charnwood. Children and young people will help shape the work throughout. 🔗 bit.ly/4zK5a8D #LongCovidKids #Leicestershire
longcovidkids.org
St. James’s Place awards £5,000 to support Long Covid Kids and Friends project in Charnwood
Together, we will explore the prevalence and impact of Long Covid and associated symptoms among children and young people, with a particular focus on communities experiencing social and economic disad...
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Long Covid Kids @longcovidkids.bsky.social · 15/08/2026
A little #summer inspiration. Looking for something to read, create or do? We’ve got three new blogs. We hope you find a little inspiration to enjoy at your own pace, and remember to stay cool, keep hydrated and stay sun safe in the summer heat. longcovidkids.org/so/feP--mUXm
longcovidkids.org
What's New
Hello Friends, A little summer inspiration. Looking for something to read, create or do this summer? We’ve got three new blogs from the Long Covid Kids community to explore. We hope you find a little ...
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Long Covid Kids @longcovidkids.bsky.social · 15/08/2026
A little #summer inspiration. Looking for something to read, create or do? We’ve got three new blogs. We hope you find a little inspiration to enjoy at your own pace, and remember to stay cool, keep hydrated and stay sun safe in the summer heat. longcovidkids.org/so/feP--mUXm
longcovidkids.org
What's New
Hello Friends, A little summer inspiration. Looking for something to read, create or do this summer? We’ve got three new blogs from the Long Covid Kids community to explore. We hope you find a little ...
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Long Covid Kids @longcovidkids.bsky.social · 11/08/2026
🎨 Could your design be our next Long Covid Kids T-shirt? Our design competition is open to anyone aged 21 & under. Create something inspired by hope, belonging, courage, community — or something completely different. 👇 www.longcovidkids.org/post/design-... #LongCovidKids #LongCovid #Summer
The text at the top says, 'Calling young creatives. Could your design be on our next Long Covid Kids T-shirt?'
Blue background, white writing. An orange arrow points down to a black and white image of art materials and orange writing says 'Read our blog to find out more'.  There is a Long Covid Kids logo in the bottom left corner.
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Long Covid Kids @longcovidkids.bsky.social · 08/08/2026
🧡 On #SevereMEDay we stand alongside everyone living with severe and very severe ME, their families and carers, and remember those whose lives have been lost. Absence is not absence of need. #SevereME #LongCovid
A girl with dark hair stares out of a closed window with a slatted blind. Her head is resting on her hand, she looks sad.
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Prof Nisreen Alwan @nisreenalwan.bsky.social · 03/08/2026
We started looking at this with this paper but I guess we need to do more: bsky.app/profile/long...
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Long Covid Kids @longcovidkids.bsky.social · 02/08/2026
Recommendations for journalists to counter epistemic injustice in reporting Long Covid and similar conditions. pmc.ncbi.nlm.nih.gov/articles/PMC... #Journalists #LongCovid #Children #Childhood
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Long Covid Kids @longcovidkids.bsky.social · 02/08/2026
Summer newsletter take over by the youth editing team 👌 longcovidkids.org/so/aaP_rkGNW #editor #summer #writers
longcovidkids.org
Welcome to the second issue of The Long Covid Chronic-Ill, the newsletter specifically made for children and young adults with Long Covid and overlapping illnesses. This is a safe space for everyone. ...
But first, meet the editors!
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Long Covid Kids @longcovidkids.bsky.social · 01/08/2026
Five years on. Children and young people are still living with Long Covid. As Samir says at the end of this report: "That we're still here." Thank you to everyone who shared their story, and to Ruth Liptrot and @channel5news.bsky.social . 🎥⬇️ youtu.be/FZp32EIppZ8 #LongCovidKids #ChildHealth
youtu.be
Five Years On: Children and Young People Still Living with Long Covid | Channel 5 News
YouTube video by Long Covid Kids
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Long Covid Kids @longcovidkids.bsky.social · 01/08/2026
There has been a summer newsletter takeover ..... Sign up to get it in you inbox tomorrow morning 8am #Newsletter #Summer #LongCovidKids #Editor www.longcovidkids.org/join-our-new...
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Long Covid Kids @longcovidkids.bsky.social · 01/08/2026
Five years on. Children and young people are still living with Long Covid. As Samir says at the end of this report: "That we're still here." Thank you to everyone who shared their story, and to Ruth Liptrot and @channel5news.bsky.social . 🎥⬇️ youtu.be/FZp32EIppZ8 #LongCovidKids #ChildHealth
youtu.be
Five Years On: Children and Young People Still Living with Long Covid | Channel 5 News
YouTube video by Long Covid Kids
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Long Covid Kids @longcovidkids.bsky.social · 31/07/2026
🧡 Keep an eye out between 5 and 6pm this evening! Some of our members and our Chair of Trustees will be featured on Channel 5 News. We're advised this is when the report is expected to air. If you can, please help us spread the word by liking, commenting on posts. 🙏 for your support.
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Mark Faghy @profmarkfaghy.bsky.social · 30/07/2026
If you're aged 18+ and living with Long COVID, your experiences could help shape future rehabilitation pathways and improve support for others facing similar challenges. 📝 Complete the survey here: app.onlinesurveys.jisc.ac.uk/s/lboro/long...
app.onlinesurveys.jisc.ac.uk
Factors Influencing Experiences of Rehabilitation Among Adults with Long COVID: An Explanatory Sequential Mixed-Methods Study - Online Surveys | Online surveys
Online surveys is a powerful, easy to use tool for creating online surveys. Run by Jisc, Online surveys is used by over 300 different organisations in the UK...
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Long Covid Kids @longcovidkids.bsky.social · 29/07/2026
A thoughtful perspective from teacher Flynn Lovelace on what they've witnessed in classrooms since the pandemic. Children deserve the opportunity to learn, participate and thrive. We're grateful to see these experiences shared. 🧡 Worth a read. thesicktimes.org/2026/07/24/t... @thesicktimes.org
thesicktimes.org
The (sick) kids aren’t alright: Observations from a teacher with Long COVID - The Sick Times
We must help students by addressing Long COVID and advocating for clean air in schools.
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Long Covid Kids @longcovidkids.bsky.social · 28/07/2026
Plans to broaden educational opportunity are welcome. But opportunity begins long before #employment, meaningful participation in #education cannot be taken for granted. Our blog explores why participation is the foundation of opportunity for every child. www.longcovidkids.org/post/opportu...
longcovidkids.org
Participation is the bridge between education and opportunity.
Meaningful participation in education is the foundation of opportunity for children living with Long Covid and other overlapping prolonged, fluctuating and energy-limiting illnesses.
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Long Covid Kids @longcovidkids.bsky.social · 25/07/2026
She smashed it! Congratulations Jana 🙌 🥇 There is still time to donate and help Jana hit her target. 🎯 Shes so close. www.justgiving.com/page/jana-sp... #LondonT100
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Long Covid Kids @longcovidkids.bsky.social · 25/07/2026
🌟 Jana has started her triathlon 🌟 She would love to hit her target 🎯. www.justgiving.com/page/jana-sp... #LondonT100 #T100Triathlon #T100 #SwimBikeRun #LongCovidKids
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Long Covid Kids @longcovidkids.bsky.social · 22/07/2026
"I'm running this because Samir can't. "Every stroke, every pedal, and every step is for him and for every child this illness has stolen too much from. "This is my way of giving something back while helping ensure children like Samir are seen and supported." www.dorsetecho.co.uk/news/2629384...
dorsetecho.co.uk
Dorset charity backs mum taking on London T100 Sprint Triathlon for housebound son
Dorset-founded charity backs Barking mum taking on London T100 Sprint Triathlon for housebound son.
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Long Covid Kids @longcovidkids.bsky.social · 22/07/2026
Congratulations to @andyburnham.bsky.social on becoming Prime Minister. We hope the lessons of COVID-19 help shape stronger systems for children and young people—through better healthcare, joined-up education and future preparedness. Childhood doesn't wait. #ChildHealth #PandemicPreparedness
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Long Covid Kids @longcovidkids.bsky.social · 07/07/2026
This week the DfE published the first part of its updated statutory guidance on supporting pupils with medical conditions, focusing on allergy safety. There are several encouraging developments 🧵⬇️ #MedicalNeeds #SchoolInclusion #LongCovid #ChildHealth
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Sammie McFarland @sammiemc.bsky.social · 06/07/2026
One of the biggest lessons I've learnt over the last 6 yrs is that #LivedExperience doesn't simply strengthen research, clinical expertise and policy; it transforms them. www.dorsetecho.co.uk/news/2624849... (photos of behind the scenes moment from the APPG 😊) #LongCovidKids #YouthVoice
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Long Covid Kids @longcovidkids.bsky.social · 05/07/2026
We're gathering case studies about education from children, young people and families living with #LongCovid and overlapping illnesses. Barriers, good practice and what needs to change. 📧:info@longcovidkids.org #LongCovidKids #MECFS #SEND #Education
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Long Covid Kids @longcovidkids.bsky.social · 01/07/2026
“Participants set three goals they wanted to attain, such as being able to remain focused on watching an entire film or concentrating on a book. Therapists then helped participants to implement strategies to achieve their goals.” www.independent.co.uk/news/health/... #LongCovid
independent.co.uk
‘Long Covid left me with extreme fatigue and struggling to run my business’
Long Covid affects approximately two million people in the UK causing brain fog, fatigue and anxiety
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Kirsty Stanley @kirstyes.bsky.social · 01/07/2026
Farewell but definitely not goodbye to the wonderful @helen-goss.bsky.social. A superb advocate and amazing human. Look forward to hearing what’s next.
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Long Covid Kids @longcovidkids.bsky.social · 01/07/2026
A difficult but important read - @thetimes.com Sadly, many families in our community will recognise the challenges described here. As we shared at the recent APPG on Long Covid, childhood doesn't pause while a child waits to recover. www.thetimes.com/article/0072... #SEND #LongCovid
thetimes.com
I was pushed to home school my sons — now I have no support
Our Send agony aunt offers advice to a mother whose two children are too ill to go to school, leaving her to spend thousands of pounds on home education
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Long Covid Kids @longcovidkids.bsky.social · 01/07/2026
Today we want to say thank you to @helen-goss.bsky.social Roles may change, but friendships & shared purpose endure. 🙏, Helen, for your humour, courage and unwavering commitment to children, young people and families. You'll always be part of the LCK family. www.longcovidkids.org/post/thank-y...
longcovidkids.org
Thank you Helen, From The Long Covid Kids Community
For many people living with Long Covid, decisions like this are never easy. Balancing a commitment to others with the realities of a fluctuating health condition takes immense courage. Across our comm...
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Long Covid Kids @longcovidkids.bsky.social · 30/06/2026
📚 Have you explored the Long Covid Kids Resource Library? We've brought together free guidance, practical tools and trusted information for children, young people, families, educators & healthcare professionals. 🔗https://www.longcovidkids.org/download-resources #LongCovid #LongCovidKids #Resource
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Long Covid Kids @longcovidkids.bsky.social · 23/06/2026
With the summer months fully here & huge heatwaves across many countries right now we just wanted to share some ways to keep cool: ☀️Stay out of the sun at hottest time(s) of the day (typically 11-3). 🧊Sip water from a water bottle with an ice core or a #heat #heatwave #Longcovidkids #summer
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