iiinova — where your digital self keeps evolving

Long Covid UK @longcoviduk.bsky.social · 06/10/2026

If your family is feeling inspired, you can check out the fundraising section on our website or email fundraise@longcovid.org to get started. Thank you so much to everyone involved, and we hope you’re not feeling too sore! 🙏

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Long Covid UK @longcoviduk.bsky.social · 06/10/2026

The family has raised an incredible £ 2,864, including Gift Aid, which will go a long way. Can we get them over the £3000 line by the end of the week? If you would like to contribute to the campaign, please follow the link below. www.justgiving.com/page/nik-hol...

justgiving.com

Hollinghursts, Holes and family - fundraiser for Long Covid UK

Help Nicholas Hole raise money to support Long Covid Support

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Long Covid UK @longcoviduk.bsky.social · 06/10/2026

As part of our #ForThoseWhoCant campaign, we have been really keen to get more friends and families of those with Long Covid involved in fundraising activities. This is the perfect example of the power of communities coming together to show their support. 💙

justgiving.com

Hollinghursts, Holes and family - fundraiser for Long Covid UK

Help Nicholas Hole raise money to support Long Covid Support

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Long Covid UK @longcoviduk.bsky.social · 06/10/2026

Last weekend, 16 members of the Hollinghurst and Hole families set off on their annual family fundraising walk. This year, they very kindly decided to raise money for Long Covid UK, as a member of their family has been impacted by the illness. #Fundraisingheroes #LongCovidUK

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Long Covid UK @longcoviduk.bsky.social · 05/10/2026

Kris: “I’m delighted to join Long Covid UK and to use my financial leadership experience to support the charity’s long-term sustainability. I’m particularly looking forward to working with the Board, team and wider community to help ensure the charity can continue making a meaningful difference."

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Long Covid UK @longcoviduk.bsky.social · 05/10/2026

He has extensive experience in strategic financial planning, financial recovery, transformation and governance, working closely with clinical, operational and executive leaders to support sustainable services and better patient outcomes.

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Long Covid UK @longcoviduk.bsky.social · 05/10/2026

We're delighted to welcome Kris Prosser to our board as our new Treasurer! Kris is a Fellow Chartered Certified Accountant (FCCA) and senior NHS finance leader, currently working as Senior Finance Business Partner and Head of Finance for Medicine at Cardiff and Vale University Health Board.

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Long Covid UK @longcoviduk.bsky.social · 05/10/2026

ONE WEEK LEFT to apply for the position of in-person peer support project assistant! We're looking for an organised, enthusiasticself-starter to build on the success of this work and help grow attendance. Find out more and apply here: longcoviduk.livevacancies.co.uk#/job/details...

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Long Covid UK @longcoviduk.bsky.social · 02/10/2026

📢 Help shape the future of care for Long COVID and ME/CFS! The HERITAGE study is looking for people with lived experience of Long COVID and ME/CFS to take part in our study! As a part of Work Packages 1 and 2, you will: ✅ Complete 5 questionnaires over 12 months ✅ Share your symptoms and experie…

Image with a header saying Health Effects From Infection Sequelae Tailoring Services and Advancing Guidance. Logos for the Heritage study, the University of Leeds, the University of Leicester, the University of Oxford and the NIHR are also shown. Main text reads Why is Heritage needed? Care for Long Covid and ME/CFS varies across the NHS. Heritage will explore what services are provided, what people experience, what works, what needs to change. Your experiences can help inform the future of Long Covid and ME/CFS care. There is a QR code above which it says Join the Heritage Study. A website address is also given of https://heritage.leeds.ac.uk/join/

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Long Covid UK @longcoviduk.bsky.social · 02/10/2026

🏘️ Parade Enterprise Centre, Blacon 📅 Thursday 8 October 2026 (but runs monthly, if you can't make it this time!) 🕙️ 10:15/30 AM (British Summer Time). 🖥️ If you prefer to join online, contact us at support@longcovid.org ❤️‍🩹 We provide an air purifier in the room and t he building is fully accessible.

eventbrite.co.uk

Long Covid UK - In Person Peer Support Group - Blacon, Chester, UK

Join us at the In-person peer support group, sharing experiences in a safe place & finding solidarity together. Hosted by Fleur Roberts

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Long Covid UK @longcoviduk.bsky.social · 02/10/2026

For anyone that lives in Blacon, Chester and surrounding areas, please join us at the Long Covid in-person peer support group meeting next week! Whether you're a long-hauler or a caregiver, this is a safe space to share experiences, ask questions, and connect with others facing similar challenges.

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Long Covid UK @longcoviduk.bsky.social · 29/09/2026

📝 Please support the APPG if you can by writing to your MP and encouraging them to attend this meeting! #LongCovid #APPG #LongCovidAwareness #Parliament #PatientVoice #LongCovidUK

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Long Covid UK @longcoviduk.bsky.social · 29/09/2026

Jo will remain an active member of the APPG, but as she has been appointed as a Parliamentary Private Secretary (PPS), she is no longer able to hold an officer position within the group.

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Long Covid UK @longcoviduk.bsky.social · 29/09/2026

📢 Important Update from the APPG on Long Covid: Following Jo Platt MP stepping down from her role as Chair, the APPG on Long Covid will hold an Extraordinary General Meeting (EGM) to elect a new Chair on Tuesday 20 October at 2pm.

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Long Covid UK @longcoviduk.bsky.social · 25/09/2026

Back in May this year, the House of Commons Library shared a new briefing on Long Covid, sharing information on a range of issues. Why not take a read? The briefing is available here: commonslibrary.parliament.uk/research-bri... #LongCovid #ResearchBriefing #HouseOfCommons

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Long Covid UK @longcoviduk.bsky.social · 23/09/2026

We've published a summary blog about the session here: www.longcovid.org/blog/norther... - huge thanks to Rebecca for so carefully holding the space, and also to Richard Sullivan from the Sunday World who interviewed Rebecca about her experience.

longcovid.org

Northern Ireland: online peer support group — Long Covid UK

On Monday 7 September 2026, we held the first online meeting of our Northern Ireland Peer Support Group. The session was facilitated by volunteer Rebecca Logan, with support from Fleur Roberts, our…

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Long Covid UK @longcoviduk.bsky.social · 23/09/2026

We recently ran an online peer support group session, facilitated by the wonderful Rebecca Logan, who brought together a small group of people from Northern Ireland to share support, solidarity and experiences in NI.

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Long Covid UK @longcoviduk.bsky.social · 23/09/2026

This is a paid role on a fixed-term contract, subject to renewal. Interested? Apply now! longcoviduk.livevacancies.co.uk#/job/details... #LongCovid #Recruiting #Job

longcoviduk.livevacancies.co.uk

hireful.

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Long Covid UK @longcoviduk.bsky.social · 23/09/2026

We're recruiting! Apply today to join us as our first ever in-person peer support project assistant 🥳 This is a new role, supporting our groups which run monthly in Chester and Birmingham. The role includes event admin, publicity, and widening participation in our support groups.

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Long Covid UK @longcoviduk.bsky.social · 21/09/2026

Share your personal story about how your condition affects your life, the obstacles faced on a daily basis, and the impact that the stigma and disbelief regarding your condition or symptoms can have in real-world interactions. Together, we can challenge these outdated beliefs around disability.

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Long Covid UK @longcoviduk.bsky.social · 21/09/2026

www.overlappingillnessalliance.org.uk/resources/#o... We know the contents of this article may directly impact members of our community and your families. If you would like to take action, we recommend writing a respectful response directly to The Telegraph or to contact your MP.

overlappingillnessalliance.org.uk

Resources

The Overlapping Illness Alliance (OIA) is a coalition of charities working to improve recognition, care and support for people of all ages living with complex, overlapping conditions.

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Long Covid UK @longcoviduk.bsky.social · 21/09/2026

For many of the people represented by our member organisations, disability has cost them careers, education, relationships, independence and the lives they expected to lead. There is nothing cool about that.” If you would like to read the full open letter, please follow the link below.

overlappingillnessalliance.org.uk

Resources

The Overlapping Illness Alliance (OIA) is a coalition of charities working to improve recognition, care and support for people of all ages living with complex, overlapping conditions.

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Long Covid UK @longcoviduk.bsky.social · 21/09/2026

Some of these challenges that members of our community face include, but are not limited to, “years of uncertainty, delayed diagnosis, limited access to specialist care, and underfunded research are commonplace, while stigma and disbelief are experienced all too often.

overlappingillnessalliance.org.uk

Resources

The Overlapping Illness Alliance (OIA) is a coalition of charities working to improve recognition, care and support for people of all ages living with complex, overlapping conditions.

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Long Covid UK @longcoviduk.bsky.social · 21/09/2026

We believe these issues deserve scrutiny, but that scrutiny must be accurate, evidence-based, and grounded in the experiences of people directly affected” The response calls for recognition of the challenges faced by people living with complex chronic illness and disability.

overlappingillnessalliance.org.uk

Resources

The Overlapping Illness Alliance (OIA) is a coalition of charities working to improve recognition, care and support for people of all ages living with complex, overlapping conditions.

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Long Covid UK @longcoviduk.bsky.social · 21/09/2026

“The article raises serious concerns about the way complex chronic illness and disability are framed, particularly around fashion, identity, and social contagion, and the credibility of people living with poorly understood conditions.

overlappingillnessalliance.org.uk

Resources

The Overlapping Illness Alliance (OIA) is a coalition of charities working to improve recognition, care and support for people of all ages living with complex, overlapping conditions.

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Long Covid UK @longcoviduk.bsky.social · 21/09/2026

Long Covid UK is proud to stand with the Overlapping Illness Alliance to represent our community. The OIA has issued a joint letter in response to an article recently published in The Telegraph entitled ‘How having a disability became cool’.

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Long Covid UK @longcoviduk.bsky.social · 17/09/2026

Read more about Jo's experience of this remarkable work in her blog post here: www.longcovid.org/blog/reflections-on-the-mirrorbox-at-the-royal-opera-house #IWouldBeHereIfICould #Mirrorbox #RoyalOperaHouse #LongCovid

longcovid.org

https://www.longcovid.org/blog/reflections-on-the-mirrorbox-at-the-royal-opera-house

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Long Covid UK @longcoviduk.bsky.social · 17/09/2026

"What makes this installation so remarkable is its ability to create empathy through experience. It is emotional, thought-provoking, and deeply engaging in a way that feels genuinely unique."

longcovid.org

https://www.longcovid.org/blog/reflections-on-the-mirrorbox-at-the-royal-opera-house

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Long Covid UK @longcoviduk.bsky.social · 17/09/2026

Last weekend, alongside representatives from @thereforme.bsky.social, @actionforme.bsky.social and the ME Association, our trustee Jo Dainow had the opportunity to visit the Royal Opera House and experience The Mirrorbox on behalf of Long Covid UK.

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Long Covid UK @longcoviduk.bsky.social · 16/09/2026

Our Birmingham in-person peer support group is back! Join us on 25 September in Selly Oak and access a safe space for support, conversation and solidarity. We look forward to seeing you there! Register using Eventbrite: www.eventbrite.co.uk/e/long-covid... #LongCovid #PeerSupport #Birmingham

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Long Covid UK @longcoviduk.bsky.social · 15/09/2026

New blog: our fab trustee Dr Margaret O'Hara presented at the ISLC PAIS Conference at the end of August, and we're sharing a blog with her reflections. Want to find out more about this work and what the project set out to do? Read it here www.longcovid.org/blog/find-ou... #LongCovid #Research

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Long Covid UK @longcoviduk.bsky.social · 14/09/2026

Last week, Long Covid Support became Long Covid UK. Same charity. Same mission. New look. Head to our brand new website to have a look around! www.longcovid.org #LongCovidUK #Rebrand

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Long Covid UK @longcoviduk.bsky.social · 12/09/2026

She trained in medicine at the Universities of Cambridge and Oxford and is Associate Professor (Reader) in Brain-Body Medicine in the Department of Clinical Neuroscience at Brighton and Sussex Medical School.Dr Eccles also works within the Sussex NHS Neurodevelopmental Service.

linktr.ee

https://linktr.ee/bendybrain

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Long Covid UK @longcoviduk.bsky.social · 12/09/2026

Dr Jessica Eccles is an award-winning researcher and neurodevelopmental psychiatrist specialising in the links between the brain and body, particularly as they relate to flexible joints and hypermobility.

linktr.ee

https://linktr.ee/bendybrain

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Long Covid UK @longcoviduk.bsky.social · 12/09/2026

Long Covid Live continues to bring together clinicians, researchers, healthcare professionals, specialists and patient voices to provide a freely accessible public resource for information, expertise and informed discussion around Long COVID, research, treatment, care, recovery and lived experience.

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Long Covid UK @longcoviduk.bsky.social · 12/09/2026

This is the first official episode of Long Covid Live, delivered in partnership with Dr Binita Kane, founder of The Long Covid Clinic, building on "The Long Covid Clinic: What You Can Do" fireside chat series, which began in June 2023. www.youtube.com/live/sufesaa...

youtube.com

Neurodivergence, Hypermobility & Long COVID with Dr Jessica Eccles

#Neurodivergence, #Hypermobility & Long #COVID with Dr Jessica EcclesWelcome to Long Covid Live. This is the first official episode of Long Covid Live, deliv...

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Long Covid UK @longcoviduk.bsky.social · 12/09/2026

Join us for 'Neurodivergence, Hypermobility & Long COVID with Dr Jessica Eccles' on Wednesday 16 September, at 6pm! Dr Binita Kane & Dr Jessica Eccles speak about the fascinating connections between Long COVID, neurodivergence, ADHD, autism, joint hypermobility, dysautonomia, POTS, ME/CFS, & more.

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Long Covid UK @longcoviduk.bsky.social · 12/09/2026

Are you interested in fundraising for us? If so, head to our website to find out more about how to set up a fundraiser and get some activity ideas! #ForThoseWhoCan't #fundraiser #CharitySwim

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Long Covid UK @longcoviduk.bsky.social · 12/09/2026

The wonderful George Brill has been swimming, swimming, swimming to fundraise for us - and he's written a blog about the experience for us. Read the blog and donate below! 📖 www.longcovid.org/blog/for-tho... 💸 www.justgiving.com/page/george-... 1/

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Long Covid UK @longcoviduk.bsky.social · 09/09/2026

We collaborate widely, working in close partnership with other Long Covid charities. Different organisations bring different expertise, lived experience perspectives and networks, allowing us to support a wider range of people. More info: www.longcovid.org/collaboration #LongCovid #Collaboration

longcovid.org

https://www.longcovid.org/collaboration

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Long Covid UK @longcoviduk.bsky.social · 09/09/2026

We might have a new name and a new look, but our goal remains the same: to reduce the impacts of Long Covid and improve the lives of all those affected. #LongCovid #LongCovidUK #Mission

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Long Covid UK @longcoviduk.bsky.social · 09/09/2026

Everything we do is shaped by our values. We are peer-led, inclusive, expert, driven, collaborative and dependable. Collaboration is very important to us – the multi-organisational ecosystem of support for people affected by Long Covid is a strength.

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Long Covid UK @longcoviduk.bsky.social · 09/09/2026

We continue to push for a future in which people affected by Long Covid are heard, supported and able to access the care, understanding and opportunities they deserve. One day, we want to live in a world where Long Covid no longer exists. Join us: www.longcovid.org #LongCovid #Vision

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Long Covid UK @longcoviduk.bsky.social · 08/09/2026

Our new name better reflects the national work this community has built together. Alongside this new look, we’re launching a new website to improve access to information and support. Head to www.longcovid.org to find out more. Thank you for being part of this journey💙

longcovid.org

Long Covid UK | Support Long Covid Awareness Today

Long Covid UK is a national charity dedicated to supporting those affected by Long Covid through community engagement, research, and systemic change. Join us today.

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Long Covid UK @longcoviduk.bsky.social · 08/09/2026

We are excited to announce that Long Covid Support has become Long Covid UK. Nothing about our purpose has changed. We are still here to support people living with Long Covid and to drive the change that is urgently needed. 1/

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Long Covid UK @longcoviduk.bsky.social · 04/09/2026

Something new is coming. Over the past year, we’ve been working on something important behind the scenes. We’re looking forward to sharing more with you soon. #LongCovid #Announcement

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Long Covid UK @longcoviduk.bsky.social · 29/08/2026

Join the journey from wherever you are. Listen online. Send a digital postcard. Become part of a growing national artwork amplifying the absence of so many living with ME and Long Covid. Follow along: @iwouldbehereificould #LongCovid #Mirrorbox

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