Nikki Smith
@nikki-s.bsky.social
Appreciate the small things, draw strength from nature, and don’t take anything for granted. Background in scientific evidence. In Long Covid hell since Feb. 2020. Founding Member and Research Co-Lead of the charity Long Covid Support. Views my own.
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 🙏
Proud to have co-authored this paper. More evidence of the devastating impact of #LongCovid.
Long Covid Support@longcovidsupport.bsky.social · 6d ago📣 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
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.
Long Covid Support@longcovidsupport.bsky.social · 3w agoThe 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
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
Long Covid Support@longcovidsupport.bsky.social · 3w agoThe 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
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.
Long Covid Support@longcovidsupport.bsky.social · 4w agoYou 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/
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/
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
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
eventbrite.co.uk
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.
Fantastic news! But you can still donate, to help @longcovidsupport.bsky.social help even more people! #LongCovid
Long Covid Support@longcovidsupport.bsky.social · last mo.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...
📣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
Long Covid Support@longcovidsupport.bsky.social · last mo.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.
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?
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...
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.
longcovidkids.org
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
Long Covid Support
Long Covid Support Email Forms
eepurl.com
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
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/
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...
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
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
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
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
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.
Kate and Martin's fundraiser for Long Covid Support
Help Emily Morrison raise money to support Long Covid Support
justgiving.com
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
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
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
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
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
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…
justgiving.com
❤️🩹 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
Covid - forgotten but not gone. Like the ads I used to see on the tram about TB as a kid
Nikki Smith@nikki-s.bsky.social · 5mo agoOn #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
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
