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Long Covid UK @longcoviduk.bsky.social · 21h

📢 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

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

📢 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 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

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

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

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

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

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 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

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

The Mirrorbox is on the move. Taking messages from people living with ME and Long Covid to the places they love but can no longer reach. Next stop: Royal Opera House, London | 12–13 September

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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 UK @longcoviduk.bsky.social · 28/08/2026

If you didn't manage to make it to You're Not Imagining It — Long COVID, ME & Other Invisible Illnesses on 22 July, hosted as part of South Asian Heritage Month, the recording of the webinar is now available on YouTube. Watch: www.youtube.com/watch?v=BOuP... #LongCovid #SouthAsianHeritageMonth

youtube.com

You're Not Imagining It: Long COVID, ME & Invisible Illnesses in South Asian Communities

Invisible illnesses can be some of the hardest conditions to live with—not only because of the symptoms, but because so many people struggle to be believed. In this South Asian Heritage Month…

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Long Covid UK @longcoviduk.bsky.social · 21/08/2026

Minutes are available for the June APPG on Long Covid, focusing on the impact of #LongCovid on Children and Young People (CYP), with a presentation from @longcovidkids.bsky.social “It shouldn’t take 6 years to get listened to for the first time” - Kitty McFarland, Youth Advocate, Long Covid Kids

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Long Covid UK @longcoviduk.bsky.social · 11/08/2026

Amazing news, Long Covid Support is getting paid in easyfundraising’s £2 million Donation Day! You can raise free donations every time you shop online with #easyfundraising – it’s such a simple way to make a difference. Want to get involved?

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Long Covid UK @longcoviduk.bsky.social · 05/08/2026

August is a quieter month for us here at Long Covid Support, but we are still here! Opportunities for peer support and connection continue across our Facebook groups, and if you attend our in person peer support groups regularly, don't forget we have a break in August - we'll return in September.

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Long Covid UK @longcoviduk.bsky.social · 31/07/2026

Last year, 17 incredible fundraisers took on challenges #ForThoseWhoCant. Whether running, cycling, crocheting, or asking friends to donate on a special occasion, we were so grateful to each and everyone who took the time to raise funds for our charity 🙏

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Long Covid UK @longcoviduk.bsky.social · 31/07/2026

📣 New paper out on Long Covid and work from REACT Study. Based on over 45,000 participants: 🔷 4.3% had unresolved Long Covid 🔷 An additional 2.3% had resolved Long Covid 🔷 Participants with unresolved Long Covid had 38% lower odds of being in paid work, & 4x higher odds of having to change hours

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Long Covid UK @longcoviduk.bsky.social · 24/07/2026

Have you joined us on Easy Fundraising? Here's how it works: 📧 Sign up 🛒 Shop 🛍️ Brands pay us at no cost to you You can even use their handy browser extension to remind you every time you're on an eligible website before you check out or go straight through their app on your phone.

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Long Covid UK @longcoviduk.bsky.social · 17/07/2026

The latest NHS England GP Patient Survey data is now available - and our team have started having a look through it. The numbers show us that an average of 3.53% of people aged 16 and over have Long Covid in England. Follow us for more stats as we process the data. #LongCovid #StillHere

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Long Covid UK @longcoviduk.bsky.social · 14/07/2026

Our Birmingham in-person peer support group is coming up at the end of July before the summer break in August! 📆 Friday 31 July 🕚️ 11am - midday 📍 Sense Touchbase Pears, Selly Oak You can register now using the Eventbrite link - please do join us if you are available. tinyurl.com/IPPS-Birmingham

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Long Covid UK @longcoviduk.bsky.social · 08/07/2026

As part of South Asian Heritage Month, You're Not Imagining It is a free online event exploring Long COVID, ME and invisible illness in South Asian communities - a hopeful, practical conversation by host Asma Younus and leading experts Dr Binita Kane and Dr Sanjay Gupta. 1/

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Long Covid UK @longcoviduk.bsky.social · 07/07/2026

You might have seen that we are discussing PIP in a workshop in Chester next week – but if Chester’s a bit far for you, we’re also running the workshop online. On Monday 13 July at 10:30am join us for a dedicated discussion about Personal Independence Payments (PIP). 1/

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Long Covid UK @longcoviduk.bsky.social · 03/07/2026

We did it! Thanks to our generous community, our final total, including gift aid and match donations, is an incredible £5,540! We truly couldn't have done this without you and are so grateful to everyone who donated, engaged with our posts, and shared them with your friends and family.

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Long Covid UK @longcoviduk.bsky.social · 01/07/2026

On 9 July, our in-person peer support group in Chester will be exploring a specific issue: Personal Independence Payments (PIP). As part of the DWP’s review of PIP, we’re running workshops to gather insight into how people affected by Long Covid experience the PIP system. 1/

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Long Covid UK @longcoviduk.bsky.social · 27/06/2026

We’ve been gathering feedback on our In-Person Peer Support (IPPS) groups. What we’re hearing is that these groups have quickly become an important form of connection for those attending in both Birmingham and Chester. Validation, support, and community.

Having my symptoms validated means so much, and Fleur and the others who lead the group create a space where you truly feel heard and understood. I’ve built new friendships, and every time I leave a meeting, I feel lighter in my mood and more confident that I can manage whatever comes next

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Long Covid UK @longcoviduk.bsky.social · 26/06/2026

We did it! You helped us double the difference, and we've reached our £5000 fundraising goal 🎉 🥳An enormous thank you to everyone who has donated, shared, and engaged this week to help us meet our target and to our champion funders at Postcode Neighbourhood Trust. donate.biggive.org/campaign/a05...

"You doubled the difference!"

Trustee professor Danny Altmann delivers a speech in front of the Long Covid Support community banner. To the left of the image, two seated friends rest their heads on each other for support.

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Long Covid UK @longcoviduk.bsky.social · 26/06/2026

We are almost at the finish line! With just £398 left to hit our target, we're so close. You can help us achieve our goal by sharing the link with family, friends, and your wider networks. There is still time to have your donation doubled until we hit £5K! donate.biggive.org/campaign/a05...

Protestors gather outside the Covid Inquiry. They are masked and wearing Long Covid Support shirts and holding placards demanding clean air and recognition and progress for the those suffering with Long Covid.

An orange graphic is at the bottom of the screen reading: "Help us reach the finish line. Amount raised : £4602, campaign target: £5000, 92%"

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Long Covid UK @longcoviduk.bsky.social · 26/06/2026

As a charity, we are very grateful to have the support of Jo Platt MP. Having experienced Long Covid herself, she is an invaluable voice in Parliament, and her work as Chair of the All-Party Parliamentary Group helps our voices remain in the public conversation. Jo has shared a quote with us today.

From left to right pictured are: Jo Dainow (Founding member and Trustee Long Covid Support) wearing a green shirt and brown trousers, Nigel Rothband (Chair of Long Covid Support) in a pink shirt and white trousers, Jo Platt MP (Chair of the APPG on Long Covid) in a white shirt and khaki trousers, Maisie Hulbert (Interim Chief Executive Long Covid Support) in a white and blue sundress and Emily Miller (Community Fundraising Lead Long covid Support) in a brown dress with a blue cane. Behind them is a blue sky and view across the River Thames with the London Eye in the background.
In the top right are the logos for Big Give's Small Charity Week, Globals Make Some Noise and NCVO

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Long Covid UK @longcoviduk.bsky.social · 25/06/2026

Yesterday was the latest meeting of the All-Party Parliamentary Group (APPG) on Long Covid, of which we serve as secretariat. The session focused on the experiences and needs of children and young people. We want to extend our thanks to all those in attendance.

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Long Covid UK @longcoviduk.bsky.social · 25/06/2026

Our amazing Research Involvement Consultancy (we like to call it the RIC) has been involved in helping centre Long Covid patients in research, making sure their lived experience is taken into account in studies, and recruiting people to take part. See our latest post on FB or Instagram for more info

I have been working in Patient and Public involvement for around 17 years and have never had the pleasure of working with such a dynamic, passionate, and knowledgeable group as yourselves. Honestly, if you step back and look at how you’ve managed all the activity and work, it is incredible. The impact you have had on improving things for the Long Covid Community is enormous.

Amy Rebane. PPI, Engagement, and Participation Lead. NIHR Leeds Biomedical Research Centre

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Long Covid UK @longcoviduk.bsky.social · 24/06/2026

In January, we launched our first in-person peer support (IPPS) groups in Chester and Birmingham. One of our funding goals through this campaign is to expand our IPPS offerings and establish more groups in high-need areas.

Being part of the Long Covid support group has made such a difference in my life. It’s eased the feelings of isolation, loneliness, and being forgotten, and replaced them with understanding and connection.

Double the difference.

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Long Covid UK @longcoviduk.bsky.social · 23/06/2026

Did you take part in the PHOSP-COVID study? If so, it’s time for the 5 year follow-up! This follow-up work is crucial to help understand long-term impacts of Covid-19, and the information collected will help improve future care, treatment and support of those affected by the virus. 1/

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Long Covid UK @longcoviduk.bsky.social · 22/06/2026

In case you missed it, our Big Give page is now LIVE! From now until 5 pm on the 29th of June, your donation will be DOUBLED thanks to our match funding from @PostcodeLotteryUK up to £5000. This means that if you donate £25, you’ll essentially be giving £50 to a good cause at no extra cost to you.

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Long Covid UK @longcoviduk.bsky.social · 22/06/2026

So, we're raising funds, but you might be wondering, where does the money go? See the images below to learn about how we'll be putting the funds raised to good use. You can also find more info on our campaign page and make your donation go twice as far today: donate.biggive.org/campaign/a05...

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Long Covid UK @longcoviduk.bsky.social · 22/06/2026

Our Big Give Small Charity Week campaign is live 🥳 From 22 - 29 June, every pound you donate up to £2,500 will be DOUBLED by a generous match fund from our champion, the Postcode Neighbourhood Trust. donate.biggive.org/campaign/a05... #LongCovid #BigGive #SmallCharityWeek #MatchFunding

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Long Covid UK @longcoviduk.bsky.social · 19/06/2026

📢 Help us make sure children’s voices are heard in Parliament alongside @longcovidkids.bsky.social On 24 June, the APPG on Long Covid will hear evidence from children, young people and families affected by Long Covid. We need MPs to attend and hear directly about the impact Long Covid has. 1/

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Long Covid UK @longcoviduk.bsky.social · 18/06/2026

We are excited to have been granted £2.5k in match funding from Postcode Neighbourhood Trust, in partnership with the Big Give for Small Charity Week! But what does match funding mean?

A purple, blue, white and pink background. On the left hand side there is an image of Cat, a young white woman using a red mobility scooter. She is wearing a beanie and a blue hoodie, smiling with her hands in the air. White text reads: " How match funding works" below it are the logos for Small Charity Week (Big Give), Global's Make Some Noise, and NCVO.

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Long Covid UK @longcoviduk.bsky.social · 15/06/2026

We’re thrilled to share that next week is Small Charity Week, and as part of the Big Give/NCVO/Global celebrations, we have been awarded £2500 in matchable funds from our champion, the People's Postcode Lottery!

On the left, an asian woman with a short haircut wearing a long-sleeved blue collared shirt and a white N95 mask stands. She's looking up with her hand on her chest.

On the right, text reads "Get ready to have your donations doubled! 22-29 June Save the date. The design is red with white text. In the bottom right corner are the logos of Small Charity Week (Big Give), Global's Make Some Noise, and NCVO.

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Long Covid UK @longcoviduk.bsky.social · 12/06/2026

JOIN OUR MAILING LIST! We've recently started sending our quarterly newsletters again after a break and we wanted to remind you that you can sign up to receive them! Sign up here for updates across our Support, Research and Influencing workstreams: eepurl.com/g_plfX

eepurl.com

Long Covid Support

Long Covid Support Email Forms

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Long Covid UK @longcoviduk.bsky.social · 11/06/2026

The next APPG on Long Covid meeting will be held on Wednesday 24 June at 4pm. @longcovidkids.bsky.social will be presenting on the impact of Long Covid on Children and Young People. Please do write to your MP and ask them to attend this very important and insightful session. #LongCovid #APPG

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

We signed this important open letter addressing the framing of Long Covid at the Royal College of Psychiatrists International Congress on 15 June 2026 - thanks to @LongCovidAdvoc for all their work. Read the full letter here: www.longcovidadvoc.com/post/open-le... #LongCovid #RCPsychIC

longcovidadvoc.com

Open Letter Update: Solidarity, Engagement, and Next Steps

The response has been extraordinary. To date, the letter has received 1,200 individual signatories and the support of 58 organisations, including clinicians, researchers, patient advocates, and…

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