iiinova — where your digital self keeps evolving

Reposted by Nikki Smith

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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Reposted by Nikki Smith

BioVie Inc @biovie.bsky.social · 15/09/2026

Today, we announced positive results from our Phase 2 signal finding ADDRESS-LC trial evalulating bezisterim for the treatment of neurological symptoms associated with #LongCOVID. Read: investors.bioviepharma.com/news/news-de...

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Reposted by Nikki Smith

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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Nikki Smith @nikki-s.bsky.social · 08/09/2026

Exciting news indeed! Long Covid Support becomes Long Covid UK, continuing with the same powerful drive to reduce impact of Long Covid, from community support to research involvement to influencing policymakers. The charity remains lived-experience informed, evidence based and determined. #LongCovid

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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 · 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 · 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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Nikki Smith @nikki-s.bsky.social · 31/07/2026

Proud to have co-authored this paper. More evidence of the devastating impact of #LongCovid.

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Reposted by Nikki Smith

Martin Grimshaw Has Long Covid @thrivingplanet.bsky.social · 18/07/2026

As a quick and rough estimate this means almost 2 million currently have some form of Long Covid in England alone. These are the first stats we've seen on this for a long time, since UK Gov decided it would be better if we just stopped counting and stopped talking about it.

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Nikki Smith @nikki-s.bsky.social · 17/07/2026

An astonishing number of people have #LongCovid, and it’s clear this is an underestimation. Yet this continues to be swept under the carpet, despite the vast impact it is having. There will be more to come out from @longcovidsupport.bsky.social soon. #StillHere

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Nikki Smith @nikki-s.bsky.social · 08/07/2026

Based in England or Wales with experience of #PIP re. #LongCovid? On Mon. 13th July @longcovidsupport.bsky.social are running an online workshop to collate your views. They will be anonymised & submitted to the #TimmsReview. A great opportunity to ensure your voice is heard, so do please sign up.

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Reposted by Nikki Smith

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 · 01/07/2026

Places are limited and first come first served, so sign up now on Eventbrite: www.eventbrite.co.uk/e/in-person-... Stay tuned for an announcement of a separate online workshop on PIP if you aren't local or can't attend in person! #PIP 3/3

eventbrite.co.uk

In Person Peer Support Group - Blacon, Chester

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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Reposted by Nikki Smith

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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Nikki Smith @nikki-s.bsky.social · 26/06/2026

Fantastic news! But you can still donate, to help @longcovidsupport.bsky.social help even more people! #LongCovid

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Nikki Smith @nikki-s.bsky.social · 22/06/2026

📣1/2. With an estimated 2-3 million people in the UK alone with #LongCovid, and the global estimate being 400+ million people, charities such as Long Covid Support are vital, working with an array of researchers, policy makers and other stakeholders to drive for improved care and support. / #BigGive

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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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Reposted by Nikki Smith

Long Covid Kids @longcovidkids.bsky.social · 11/06/2026

Send our template letter to your elected representative today and ask them to attend the APPG on #LongCovid on the 24th June. Paediatric focus. They will hear directly from a young person with Long Covid, a presentation from LCK and NHS colleagues. www.longcovidkids.org/post/all-par...

longcovidkids.org

All-Party Parliamentary Group (APPG) on Paediatric Long Covid on 24 June.

The APPG will focus on the experiences, challenges and needs of children and young people living with Long Covid, ensuring that their voices and realities are at the centre of the conversation.

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Reposted by Nikki Smith

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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Reposted by Nikki Smith

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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Reposted by Nikki Smith

Long Covid UK @longcoviduk.bsky.social · 23/05/2026

We’re delighted to welcome Dr Binita Kane to our forum in Chester on 28 May. Dr Kane is a respiratory consultant with vast experience supporting adults and children living with Long Covid, and a respected advocate for better recognition, understanding, and support for those impacted. 1/

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Long Covid Scotland @longcovidscot.bsky.social · 25/05/2026

Long Covid Scotland: 2026 Care & Support Survey We need to hear from people living with Long Covid across Scotland about experiences of care, support, and healthcare Your responses will help us understand what’s working for you, what isn’t & what needs to change. docs.google.com/forms/d/e/1F...

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Reposted by Nikki Smith

Long Covid UK @longcoviduk.bsky.social · 14/05/2026

We're delighted to be attending the POTS UK Masterclass in London today. Lots of informative presentations, opened up by Dr Lesley Kavi followed by Dr Nick Gall. Thanks @potsuk for having us! #PoTS #PoTSMasterclass #RaiseAwareness #MedicalTraining

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Reposted by Nikki Smith

Long Covid UK @longcoviduk.bsky.social · 11/05/2026

JOIN US this Thursday, 14 May for our in-person peer support group in Chester 🩵 Respiratory physio Ceri Whitehead will be joining us, to run an interactive session regarding breathing pattern disorder. Sign up here: www.eventbrite.co.uk/e/in-person-... #LongCovid #LongCovidSupport #PeerSupport

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Reposted by Nikki Smith

Long Covid UK @longcoviduk.bsky.social · 30/04/2026

Minutes from the most recent AGM of the APPG on Long Covid are now available. Is your MP a Member of the APPG? If not, ask them to join today! @joplatt.bsky.social @nigelrothband.bsky.social #LongCovid #LongCovidAPPG

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Long Covid UK @longcoviduk.bsky.social · 14/04/2026

The APPG on Long Covid held a successful AGM on 24th March 2026. It has been registered and is good to go for another year! Plans were discussed for upcoming meetings, and minutes from the meeting will be available on our website soon. @joplatt.bsky.social @nigelrothband.bsky.social

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Reposted by Nikki Smith

Long Covid UK @longcoviduk.bsky.social · 10/04/2026

Our #ForThoseWhoCant fundraising champion of the week is Emily Morrison. Emily has been deeply impacted by Long Covid and her sister Kate and her partner Martin will be running the Zurich Marathon, this Sunday, to raise awareness and donations for Long Covid Support.

justgiving.com

Kate and Martin's fundraiser for Long Covid Support

Help Emily Morrison raise money to support Long Covid Support

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Reposted by Nikki Smith

Long Covid UK @longcoviduk.bsky.social · 31/03/2026

Jo Dainow, Founding Member and Trustee of Long Covid Support, shares the story of how the charity was founded and what it's focus is now. #LongCovid #LongCovidAwareness #LongCovidSupport

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Long Covid UK @longcoviduk.bsky.social · 18/03/2026

Think Global Health has reported on the closure of Long Covid clinics across the country despite millions still living with Long Covid. 🔗 Read the full article here: www.thinkglobalhealth.org/article/engl... #LongCovidSupport #LongCovid #LongCovidClinics #LongCovid Awareness

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Reposted by Nikki Smith

Long Covid UK @longcoviduk.bsky.social · 16/03/2026

Today, alongside Long Covid Kids, Long Covid SOS and Long Covid Physio, we release our demands ahead of the release of the UK Covid-19 Inquiry report on Module 3 (due on Thursday 19 March). Read the press release on our website: www.longcovid.org/impact/news/... #CovidInquiry #LongCovid

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Nikki Smith @nikki-s.bsky.social · 15/03/2026

The NHS England GP Patient Survey 2025 asked approx. 700,000 people if they have #LongCovid. Yes: 4.2% I don’t know: 9.5% These figures are staggering evidence of the likely prevalence of symptomatic people & the continuing lack of education on Long Covid. #LongCovidAwareness

White background with a red heart with a heart beat trace across the middle. Black text around the heart reads Every Heartbeat Counts. Below is written hashtag Long Covid Awareness Day.

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Reposted by Nikki Smith

Long Covid UK @longcoviduk.bsky.social · 15/03/2026

If you or a loved one are able to donate to our fundraiser today, we are asking for £6 for 6 years — £1 for each year since the pandemic began. You can donate quickly and securely via the JustGiving link: www.justgiving.com/campaign/lon... #LongCovidAwarenessDay #EveryHeartbeatCounts 3/3

justgiving.com

Long Covid Awareness Day 2026

Make a one-off donation of £6 to symbolise every year of the pandemic that has passed. Or, if you're able, become a regular donor. Together we can make a difference to the lives of those living with…

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Reposted by Nikki Smith

Long Covid UK @longcoviduk.bsky.social · 15/03/2026

❤️‍🩹 A THANK YOU TO OUR COMMUNITY ❤️‍🩹 Today is Long Covid Awareness Day. Around the world, people will be talking about Long Covid, learning more about what it is, and hearing about its impact. 1/3

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Reposted by Nikki Smith

Prof Ros Gleadow FAA 💙💚 @rgleadow.bsky.social · 15/03/2026

Covid - forgotten but not gone. Like the ads I used to see on the tram about TB as a kid

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Nikki Smith @nikki-s.bsky.social · 15/03/2026

On #LongCovidAwarenessDay, here’s the video I did recently when I reached 6 years of debilitating, disabling and life-changing #LongCovid illness. Millions of people worldwide facing systemic neglect. #LongCovidHeartbeats #LongCovidAwareness

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Nikki Smith @nikki-s.bsky.social · 15/03/2026

“You’re not just becoming disabled, you’re realizing how easily society at large and people in your life will abandon you when you cannot offer them things.” ⬇️⬇️⬇️ #LongCovid #LongCovidAwareness #LongCovidHeartbeats

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Reposted by Nikki Smith

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

PART 2 - Prevalence of Long Covid Professor Danny Altmann, Immunologist at Imperial College London and Trustee of Long Covid Support, explains why the number of Long Covid cases in the UK is increasing . #LongCovid #LongCovidAwareness #ProfessorDannyAltmann #LongCovidSupport

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Reposted by Nikki Smith

Alison Twycross RN PhD @alitwy.bsky.social · 18/02/2026

I’ve also had Long Covid for 6 years. I was eventually seen by the local Long Covid service when it was set up in 2021 but was discharged once I’d had a few tests and completed some rehab online workshops.

media.tenor.com

a man in a suit and tie says i 'm afraid that 's not good enough

ALT: a man in a suit and tie says i 'm afraid that 's not good enough

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Nikki Smith @nikki-s.bsky.social · 04/03/2026

🚨Research finds people who’ve had #Covid are at: ⚠️ 4.7 times the risk for kidney failure ⚠️ 3.2 times the risk for end-stage renal disease ⚠️ 2.7 times the risk for acute kidney injury ⚠️ 1.4 times the risk for chronic kidney disease And more! #LongCovid

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Reposted by Nikki Smith

Long Covid UK @longcoviduk.bsky.social · 02/03/2026

“We are being left in some kind of void.” - Margaret O’Hara, Trustee, Long Covid Support BBC News North East & Cumbria reports the region’s last dedicated Long Covid clinics are due to close this month. Read: www.bbc.co.uk/news/article... #LongCovid #LongCovidClinics

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Long Covid UK @longcoviduk.bsky.social · 23/02/2026

1/ Our Chair, Nigel Rothband (centre), recently met with partners in the Overlapping Illness Alliance to move our shared advocacy work forward. Together, we focused on how to improve recognition and strengthen support for people living with overlapping and under-recognised conditions.

Seven advocacy leaders pose together in a modern office atrium following a meeting. One woman sits in a wheelchair at the front, with six others standing behind her. The space features glass walls and hanging decorative lights.

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Spencer Carter @microburin.bsky.social · 17/02/2026

This is true (UK). I was discharged from #LongCovid Hospital Clinic in 2022, a 2yr wait since 2020 infection, with myriad ongoing symptoms. Offered only Talking Therapy in 2024. There's zero support, nothing joined up, government sweeping us under a carpet. Life is upside down, frightening. I cry.

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Reposted by Nikki Smith

Ruairidh Milne @ruairidhm.bsky.social · 17/02/2026

Powerful video from @nikki-s.bsky.social on 6 years of #LongCovid. Tens of thousands of others are approaching same anniversary in UK alone - millions worldwide. A very long tail from the pandemic. #CountLongCovid #CareForLongCovid #ResearchLongCovid

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Scribbler Pen @scribblerpen.bsky.social · 16/02/2026

Six Years. I too caught Covid this time in 2020. In those 6 years, incl. the Covid inquiry, we shared testimonies, gathered evidence, gave those who need to know all the information they needed. They know. We're still here, still ill. Like doing all, doing nothing is an active choice💔 #CureLongCovid

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Helen Ward @profhelenward.bsky.social · 16/02/2026

👇🏼 the reality for tens of thousands of people with Long COVID

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Nikki Smith @nikki-s.bsky.social · 16/02/2026

📣 6 years ago I had my first Covid-19 symptoms. Despite various debilitating symptoms still impacting my life, I was discharged from my #LongCovid service in 2024. Like thousands of others with chronic illness, I have no ongoing care. Take a look at my video ⬇️ #CureLongCovid

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Nikki Smith @nikki-s.bsky.social · 28/01/2026

Great to see @laylamoran.bsky.social paying attention to the ongoing challenges faced by millions with #LongCovid. Let’s hope this leads to much needed action by the Health & Social Care Committee. Thanks to @joplatt.bsky.social & @longcovidsupport.bsky.social Chair @nigelrothband.bsky.social!

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Long Covid UK @longcoviduk.bsky.social · 16/01/2026

Today we’re launching #ForThoseWhoCant, our new fundraising campaign. It’s about making fundraising more accessible, with ideas and guidance for friends, family, and loved ones who want to support our work. Email fundraise@longcovid.org or click here for more: www.longcovid.org/get-involved...

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

1/ ✨ Happy New Year from the team at Long Covid Support ✨ The New Year can bring a wide range of emotions. For some, it may feel like an opportunity for a fresh start. For others, it can bring uncertainty or concern about what lies ahead.

Blue background with gold stars and the text ‘Wishing you a Happy New Year’ in green and light blue.

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