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@longcovid

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Long Covid UK is a working name of Long Covid Support, a registered charity (1198938) & company limited by guarantee (13422248) in England and Wales.

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This week, I was elected chair of the Long Covid APPG in Parliament! It is my absolute pleasure to be taking the group’s work forward 💛

Anyone living with #LongCovid must receive the recognition, support, and care they need. I will continue to work to make sure your voices are heard in Parliament.

Thank you to the wonderful @longcovid group for all your hard work on this important issue 👏🏼

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Join us for our...

✨Online Comic Launch of Long Covid Superheroes✨

💛When: Monday October 26th 6-7.15pm!
💛Where: Zoom

All welcome. To sign up and receive the Zoom link follow the link in Alchemise Theatre's bio.

This will be an opportunity to watch the two comics as audio recorded films and hear from the Heroes themselves.

**Drawings by one of our young Heroes Plutokid**
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Long Covid Superheroes was a drama and comics project for young people living with Long Covid run by artists living with Long Covid from @alchemise_theatre. It was funded by Arts Council England and @_Voiceability, and supported by @long_covid_kids

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Our next Northern Ireland online peer support group is taking place on *Monday 19th October 1130-1230pm*. If you are living with Long Covid or care for someone suffering you are very welcome to join.

The meeting link is on Long Covid UK's Facebook group or you can email support@longcovid.org with your location in NI & we will send you the link.

Look forward to seeing you then.

#peersupport #longcovid #longcoviduk

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🧡 What? Long Covid Superheroes: Online Launch
💜 Where? Zoom
💚 When? October 26th 6-7.15pm

✨How do I sign up? Follow the link on @alchemise_theatre 's Bio ✨

During the launch you will get an opportunity to watch the two comics as films with audio recordings made with the young Heroes. You will also get an opportunity to hear from the Heroes themselves. Please do invite GPs, MPs, Teachers and anyone else who could be involved in making life easier for young people living with Long Covid.

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Long Covid Superheroes was a drama and comics project for young people living with Long Covid run by artists living with Long Covid from @alchemise_theatre. It was funded by Arts Council England and @_Voiceability, and supported by @long_covid_kids

To buy the full comic or donate follow the link in Alchemise Theatre's bio.

#longcovidsuperheroes #longcovid #longcovidkids #creativehealth #chronicillness

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🧡 Children must not be an afterthought in Long Covid policy.

The European Commission has published the OECD–EUPHA Long COVID Policy Dialogue policy paper.

Long Covid Kids contributed detailed feedback, advocating for greater recognition of the distinct needs and experiences of children and young people.

We welcome the progress made, including recognition of the importance of protecting children's educational pathways.

But recognition must lead to meaningful action.

Children need:
• Age-appropriate healthcare and support.
• Education systems that understand fluctuating and energy-limiting illness.
• Better coordination between healthcare, education and social services.
• Policies that anticipate their needs and protect their future opportunities.
• Meaningful involvement in decisions that affect their lives.

We believe a dedicated policy paper for children and young people would be an important next step.

Long Covid policy must do more than acknowledge that children can become ill. It must ensure that systems are prepared to respond.

Plan. Prepare. Protect.

Childhood doesn't wait. 🧡

🔗 Read the policy paper via the link in our bio.

#LongCovid #LongCovidKids #ForEveryChildhood #ChildrensHealth #InclusiveEducation #HealthPolicy

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🧡 Long Covid Kids & Friends at the BACME Annual Conference 2026

We're pleased to be contributing to this year's BACME Annual Conference, Improving Access to Education and Vocation for People Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid, on Friday 16 October.

📚 Our presentation: When Health Affects Education: Recognising Unmet Need and Responding in Practice

Drawing on the experiences of children, young people and families living with Long Covid and other prolonged, fluctuating and energy-limiting illnesses, our presentation will explore where shared challenges and individual needs can go unrecognised or unmet in education.

The session will share practical learning from our Educational Toolkit, new education resources due to launch this month, and contributions to national guidance on supporting pupils with medical needs.

Two important messages underpin this work:

🧡 Education is about more than attendance and academic attainment. It should support each child's development, relationships, sense of belonging and opportunities to learn, participate and prepare for their future.

🧡 Participation may look different. Inclusion is not the same as physical presence. Health may need to take priority, and flexible, adapted, remote or alternative approaches may be needed to maintain access, connection and belonging.

The conference brings together healthcare and education professionals, alongside children, young people and families, to explore how support can be improved across different stages of education.

We look forward to sharing our learning and hearing from others working to improve educational experiences and opportunities for children and young people living with ME/CFS and Long Covid.

📅 Friday 16 October 2026
💻 Virtual conference | 9.00 am – 4.15 pm
🎟️ Tickets: £35–£75

🔗 Register via the BACME website.

#BACME2026 #LongCovidKids #LongCovid #MECFS #Education #InclusiveEducation

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ME/longcovid we still wanna laugh, I hope thos cheers you up. Invisible illnesses please share for me 🙏 #longcovid #postexertionalmalaise #mecfsawareness #mecfsawareness

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Another lovely weekend with the family raising money for charity. Every penny is very much appreciated. Extra special thanks to Evergreen Care Ltd Finchley, Josh Wood Colour and Planit LGPM for their donations 🤝

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Everybody got their life back
My covid song to raise awareness about long covid.
I hope you can identify.
Love to you all ❤️
#longcovid #covıd19 #longcoviduk

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⚠An important and difficult read from @georgemonbiot today in the @guardian on the continued neglect, dismissal and mistreatment experienced by people with Myalgic Encephalomyelitis (ME).

For children and young people living with Long Covid, ME and other energy-limiting illnesses, and the families supporting them, much of this will feel painfully familiar.

Disbelief matters.

Outdated advice matters.

Not understanding post-exertional malaise (PEM) matters.

As Monbiot highlights, some parents of children with ME report being accused of fabricating or inducing illness when their child’s symptoms are poorly understood. Families in the Long Covid community have experienced this too.

A gap in medical knowledge is not evidence that a person’s symptoms are not real.

Children and young people must be part of this conversation.

🧡

#ME #MyalgicEncephalomyelitis #LongCovid #LongCovidKids #PEM #PESE #PaediatricLongCovid An image of The Guardian website showing The title of the article, 'Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed.' There is a photograph of George Monbiot a male journalist, wearing glasses and a blue and white check shirt.

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Thank you Richard Sullivan from The Sunday World for contacting me for an interview with regards to my health & starting the @longcovid NI online peer support group.

I hope that this reaches ppl who are suffering or caring for someone who is suffering in NI & they can join the online group. I also hope that other media outlets in NI take an interest in the diabolical state of care & services for ppl in NI suffering with Long Cxxvid so that Stormont politicians start recognising the enormity of the problem & start helping rather than ignoring us!!

Please email support@longcovid.org if you live in Northern Ireland & would like to join the group.

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Buy the comic from @alchemise_theatre!

There's also a narrated version on YouTube, by the Superheroes themselves, look for the link in their bio or on their website.

Long Covid Superheroes was conceived, designed and delivered by @alchemise_theatre, funded by Arts Council England and @voiceability_ and supported by @long_covid_kids.

Comic Illustrated by
Zhenyi Zheng @zhenyiii_zheng
Alice Urbino @aliceurbino
Costumes designed by
Kelli Des Jarlais @rosenoirdesigns

The Superheroes themselves are the very legends that are Avi, Ben, Clara, Elana, Emily, Eva, Grace, Jay, Lucy, Meredith, Olivia, Scarlett, and Sophia. And their grown-ups.

#LongCovid #LongCovidKids #accessibility #disability #community

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