Thanks to @ukpots.bsky.social for having us at their medical conference yesterday. Clinicians from around the country took home copies of the novel/guidebook, and showed great interest in the children’s poster #artwork. We even had requests to send copies for paediatric waiting room and clinics. 😃

“ I wanted to use the assembly as an opportunity to speak honestly about those experiences to encourage more empathy and understanding within the school community.” Mariam, Year 10 Student #LongCovidKids #Fundraiser #LongCovid #SchoolAssembly #Education www.nlcs.org.uk/news/more-th...

Today we stand in solidarity with children & young people affected by Myalgic Encephalomyelitis #ME, #LongCovid, and #OverlappingIllness. Many live with profound exhaustion, cognitive impairment, pain, sensory sensitivities, & post-exertional malaise #PEM. #MEAwarenessDay #EducateME #ChildHealth

Help us keep going. This special draw closes at midnight on Sunday 24th May so please nominate and share today to get your chosen charities in the running! movementforgood.com/draws/specia... #Nominate #Charity #Fundraising #Community #LongCovidKids

#Blog “Return to education is non-linear; school should not be treated as the only priority in recovery.” — Parent contributor www.longcovidkids.org/post/departm... #LongCovidKids #Education #EquitableEducation #SEND #LivedExperience

This week is Mental Health Awareness Week 💚 The theme is ‘Action’, and for families navigating Long Covid and overlapping illness early intervention and feeling supported makes all the difference. #MentalHealthAwarenessWeek #TakeAction #LongCovidKids #LongCovid #YouAreNotAlone

Encore une étude pédiatrique, n'en déplaise à certains médecins.. " Les trajectoires immuno-métaboliques permettent de définir des sous -groupes chez les enfants atteints de Covid Long pédiatrique" 👉 Une signature métabolique du Covid Long pédiatrique

Thank you to everyone raising donations for Long Covid Kids and Friends with easyfundraising!  Not joined yet? Sign up to easyfundraising and when you shop online with your favourite brands, they’ll donate to us. Sign up today: join.easyfundraising.org.uk/long-covid-k...

#Blog Today we’re sharing our DfE consultation response and family briefing. “Attendance thresholds should trigger support, not punishment.” www.longcovidkids.org/post/support... #LongCovidKids #LongCovid #SEND #InclusiveEducation #CleanAir #Attendance

Scottish election: 7th May. Three parties have committed to children with Long Covid. That's advocacy working. Now we need delivery, real services, equitable access, long-term support. A promise is not a service. 🧡 #LongCovidKids #LongCovidScotland #ScottishElection

A major new review on #LongCovid brings together current evidence on what may be driving the condition - and what still needs to change. Proud to see contributions from the LCK community, including trustee @profmarkfaghy.bsky.social Clear message: more work is needed www.nature.com/articles/s43...

1/ "The Covid Made Long project is a research partnership led by the @lshtm.bsky.social, in collaboration with @longcovidkids.bsky.social, @imperialcollegeldn.bsky.social, @longcovidsupport.bsky.social, & @posnegorg.bsky.social" - www.longcovidkids.org/post/covid-m...

So sweet from Sophia and Primrose. Please consider supporting their #fundraiser if you can- help the girls hit their target. When children are too unwell to attend school, they don’t just miss education, they miss friendship, fun, confidence, & the sense of achievement #Friends #LongCovidKids

🧡"We are 13 years old and we both have Long Covid" "One of us has had long Covid for 6 years and the other for 3 years. We met online through the long Covid kids charity and we’ve called each other everyday since". www.justgiving.com/page/sophia-... #Friendship #Friends #Childhood

🧵 A European research proposal has been submitted on post-acute infection syndromes (PAIS) in children, including Long Covid. Patient led organisations and researchers across Europe have worked as equal partners to ensure children and families are at #LongCovid #PAIS #ChildHealth #ResearchMatters

You can help increase Long Covid Kids and Friends’s entries into easyfundraising’s giveaway to win one of five £400 donations – every new supporter who joins is an entry! Sign up before midnight 26th April, it’ll only take two minutes: join.easyfundraising.org.uk/long-covid-k... #Charity #Dorset

Jill Cameron moderates our panel discussion: Caregiving for Persons Living with Long COVID with Sammie McFarland, Tracy Rutledge, Chris Trussell, Kelly Kaup, Fran Wolfe #COVIDrehab

Thank you to the panelists for sharing their experiences. Key messages: 📌 Caregiving is a journey that changes over time. 📌 There is a partnership between the person with Long COVID and their families and a good partnership is key. 📌 The caregiver also needs to be supported.

@profmarkfaghy.bsky.social, Long Covid researcher and LCK trustee is quoted in this article: “For some, walking upstairs, having a shower or even the psychological drain of a conversation can trigger a relapse and the after-effects can last weeks." www.mirror.co.uk/news/health/... #LongCovid

New research shows #LongCovid in children is linked to difficulties with concentration, learning, and time spent with friends. For families, this reflects what they already see. We need better understanding — and the right support in schools for children and young people affected. 🧡 #ChildHealth

Oh yeah. It’s here. Limited copies available to order. www.longcovidkids.org/post/covid-m... #graphicnovel #longcovidkids #resources #longcovid

Oh yeah. It’s here. Limited copies available to order. www.longcovidkids.org/post/covid-m... #graphicnovel #longcovidkids #resources #longcovid

“We call on all those working with young people with #LongCovid to facilitate young people’s alternative networks of care, and take inspiration from young people’s forms of everyday activism to proliferate the tangible, everyday, forms of support needed” www.longcovidkids.org/post/covid-m... #Care

Listening to @profmarkfaghy.bsky.social present findings - "Simply pushing through or doing more might not be a good idea" #COVIDrehab #LongCovid #MicroClots #Exercise #CPET

Tim Rhodes shares research on How Young People’s Social Worlds Alter With Long Covid. #COVIDrehab

Mark Faghy shares an update on Submaximal exercise-induced changes in microclot and cytokine profiles - shaping what we know about Long COVID rehabilitation. #COVIDrehab

Live from the @uoftcovidrehab.bsky.social Forum Tim Rhodes shares research on How Young People’s Social Worlds Alter With Long Covid. Lean more about COVID Made Long: www.longcovidkids.org/post/covid-m... #COVIDrehab #LongCovidKids #LongCovid #YoungPeople

@sammiemc.bsky.social reminding us that children with long covid do not always have the language to communicate their experience, symptoms, and needs, or to navigate health information and there is a lack of clear info and acknowledgement of severity in pediatric care

“For some caregiver parents, their children may remain severely ill, non-verbal, unable to tolerate light, and largely invisible to society” - @sammiemc.bsky.social

Thank you to everyone who supported the meeting this afternoon, by attending online, submitting the participation form or both. Special thanks to the young people who shared their experiences, and asked important questions and the DfE for listening. #Community #LongCovidKids #overlappingillness

Recently, Colin our Representative for Northern Ireland and his daughter Rosie attended the #ME Conference in #NorthernIreland, joining clinicians, researchers, patients and families to discuss the future of services for people living with ME. #NorthernIreland #YouthAdvocacy #ME #OverlappingIllness

😊 great opportunity! Benedict has been leading the development of the statutory guidance, and was supportive of LCK’s input, with many recommendations adopted Inc-language re fluctuating illness, award based attendance, requests for medical docs and #cleanair. #LongCovidKids #OverlappingIllness

We are delighted to share that Benedict Coffin, Special educational needs and disabilities national system division, Department for Education will be attending our members meeting on Wednesday. Please fill in the participation form and/or register to attend in person. Links in 🧵 below 👇🏼

When is the meeting? 📅 Wednesday 15th April 🕔 5:00pm – 6:00pm 📍 Online (joining details will be shared after registration) #LongCovidKids #LongCovidAwareness #YouthVoice #ParentVoice #SENDSupport #ChronicIllness #SchoolSupport #Education #Inclusion #EquitableEducation

Could you spare a few minutes of your Sunday? LCK and Friends would be so grateful! Please get behind us on easyfundraising. Once you join for free, you can raise cashback donations for us when you shop online with over 8,000 retailers - at no extra cost. join.easyfundraising.org.uk/long-covid-k...

2️⃣ ways to get involved to suit your needs. 🔗 Online Meeting Link and more info: us06web.zoom.us/meeting/regi...? or 🔗 Participation Form: forms.gle/Rj61MtuAC29Q... Or BOTH 😊 #YoungVoices #YouthAdvocacy #LongCovidKids #EquitableEducation

Members Consultation Meeting on the new statutory guidance. We are pleased to invite you to a special online consultation meeting with a representative from the Department for #Education (DfE). The meeting is open to young people with Long Covid or an overlapping illness, and their caregivers.

This OT led session will explore how #sensory processing and sensory input can affect fatigue, concentration and emotional regulation for young people with #LongCovid and provide strategies for management. www.longcovidkids.org/book-online #OccupationalTherapy #LongCovidKids @kirstyes.bsky.social

Don’t delay, register today! Don’t miss your chance to attend the Special Rehab Grand Rounds, a hybrid event, on Thursday April 16, 2026 from 12-1pm EDT. Visit tinyurl.com/3422h8bk for more information!

🌷 The Easter long weekend is here. Whether you’re resting at home, spending time with loved ones, or simply taking things as they come, we hope you have a peaceful and gentle break. #LongCovidKids #Easter #BankHolidayWeekend

Today, the @ukcovid-19inquiry.bsky.social announced plans for the future of the Every Story Matters archive, the largest public engagement exercise in UK inquiry history. These powerful testimonies are a vital record of how lives across the UK were changed, in many cases, forever. #ListenToChildren

What if we tell you, you can raise...from your sofa? Just sign up to easyfundraising and retailers will donate to us every time you shop online. The best part? It's completely free and your shopping won't cost you any extra. Plus, sign up today 😃 join.easyfundraising.org.uk/long-covid-k...

#Blog A parent shares what recovery would look like for them. "For Tracey to enjoy a meal or be able to join in on conversations - and without having to constantly ask people to repeat themselves,” she says. “ -just for her smile to come back.” www.longcovidkids.org/post/tracey-... #LongCovidKids

Whilst pleased that children and young people have been recognised in this latest report, our CEO @sammiemc.bsky.social hopes it leads 'to stronger, clearer recommendations' in Module 8, which focused on children and young people. #LongCovid #HealthPolicy #Dorset #LongCovidKids #ChildrensRights

We welcome the @ukcovid-19inquiry.bsky.social recognition of children & young people with Long Covid, for many families, this is deeply validating. We trust this is a step towards a future where CYP are recognised, supported, treated and able to thrive alongside their peers. #LongCovid #Children

NICE is clear that Bacterial Meningitis and meningococcal disease are transmitted by aerosol, droplets. The @ukcovid-19inquiry.bsky.social report published yesterday (1.58) says: "It is no longer appropriate to rely on this dichotomy. References to cut-off points based on particle size and the

We welcome the @ukcovid-19inquiry.bsky.social recognition of children & young people with Long Covid, for many families, this is deeply validating. We trust this is a step towards a future where CYP are recognised, supported, treated and able to thrive alongside their peers. #LongCovid #Children

The Long Covid group are now calling on the Government and devolved administrations to urgently address the ongoing failures in care. #LongCovid remains a significant public health challenge, affecting millions today with new cases emerging with each new wave. www.longcovidkids.org/post/long-co...

Today at 12pm, the UK Covid-19 Inquiry will publish its third report: ‘The impact of the Covid-19 pandemic on the healthcare systems of the United Kingdom’ (Module 3). Read our collective press release here: www.longcovidkids.org/post/long-co...

Today the @ukcovid-19inquiry.bsky.social will publish the report for Module 3. We will share updates as soon as possible. #LongCovidAwareness #UKCovidInquiry #Module3