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longcovidsupport.bsky.social
Long Covid Support
@longcovidsupport.bsky.social
5.2K followers 210 following 1K posts
UK charity dedicated to supporting people with Long Covid • Support • Research • Advocacy • Education • www.longcovid.org https://linktr.ee/longcovidsupport 📧[email protected]
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Reposted by Long Covid Support
longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 4d
1/3. 🔥Next Fireside Chat from @binitakane.bsky.social and Long Covid Support’s @helenoakleigh.bsky.social🔥

‘Updates from the Santa Fe #LongCovid Symposium’ with guest @daltmann.bsky.social.

YouTube Live: Wednesday 8th October 2025, 6pm UK time.

More details and link below ⬇️
Image containing photographs from neck up of Doctor Binita Kane on the left and Professor Danny Altmann on the right. Text reads UPDATES FROM THE SANTA FE LONG COVID SYMPOSIUM Doctor Kane talks with Prof Danny Altmann LIVE Wednesday 8th October 2025 18:00 BST. Across the bottom of the image it says THE LONG COVID CLINIC WHAT YOU CAN DO You Tube @LCCWYCD. Image also includes the Long Covid Support logo in the lower right corner.
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Long Covid Support @longcovidsupport.bsky.social · 1d
@revansbreathe.bsky.social
longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 1d
📣 Mae treial triniaeth #CovidHir sy'n recriwtio ar hyn o bryd yng Nghaerdydd!

Mae astudiaeth PHOSP-I yn profir cyffur Tocilizumab, sy'n targedu llid.

Os oes gennych Covid Hir a diddordeb mewn cymryd rhan, cysylltwch â:
[email protected]

#Cymru

Dolen i'r gwefan:

www.phosp.org/phosp-i/
PHOSP-I. Ro'n i'n nerfus iawn yn cymryd rhan ond diflannodd fy mhryderon. Mae'r tîm ymchwil mor garedig ac yn ofalgar. Roedd fy lles i yn flaenoriaeth. Maent yn gofalu amdanaf ym mhob apwyntiad. I fod yn onest, aeth y tîm y tu hwnt i ddisgwyliadau. Rwy'n falch imi gymryd rhan a byddwn yn ymuno â threial arall yn y dyfodol yn sicr. - Cyfrannwr yn yr astudiaeth PHOSP-I Dysgwch fwy am wneud cais i ymuno â'r astudiaeth PHOSP-I: www.phosp.org/phosp-i/
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 4d
3/3. Link:

NB Educational content only; not medical advice. If unwell, stop and seek medical help.

youtube.com/live/w3pfdd6...
Updates from the Santa Fe Long COVID Symposium with Professor Danny Altmann
YouTube video by The Long Covid Clinic: What You CAN Do
youtube.com
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 4d
2/3.The Santa Fe #LongCovid Symposium convened world leading scientists, physicians &
researchers to advance diagnosis, pathophysiology & treatment of post-acute infection syndromes. Join this conversation highlighting significant developments from around the world.
#PAIS

Link below ⬇️
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 4d
1/3. 🔥Next Fireside Chat from @binitakane.bsky.social and Long Covid Support’s @helenoakleigh.bsky.social🔥

‘Updates from the Santa Fe #LongCovid Symposium’ with guest @daltmann.bsky.social.

YouTube Live: Wednesday 8th October 2025, 6pm UK time.

More details and link below ⬇️
Image containing photographs from neck up of Doctor Binita Kane on the left and Professor Danny Altmann on the right. Text reads UPDATES FROM THE SANTA FE LONG COVID SYMPOSIUM Doctor Kane talks with Prof Danny Altmann LIVE Wednesday 8th October 2025 18:00 BST. Across the bottom of the image it says THE LONG COVID CLINIC WHAT YOU CAN DO You Tube @LCCWYCD. Image also includes the Long Covid Support logo in the lower right corner.
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 8d
4/4. Link to the paper on incidence of #LongCovid diagnosis:

onlinelibrary.wiley.com/doi/10.1111/...
Understanding the Clinical Characteristics and Timeliness of Diagnosis for Patients Diagnosed With Long Covid: A Retrospective Observational Cohort Study From North West London
Background Long Covid is a multisystem condition first identified in the Covid-19 pandemic, characterised by a wide range of symptoms including fatigue, breathlessness and cognitive impairment. Cons...
onlinelibrary.wiley.com
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 8d
3/4. The paper continues:
 
“…This is supported by recent linkage of self-reported #LongCovid to primary care records, which found that as few as 5.4% of patients with self-reported long Covid had a recorded long Covid diagnosis.”
 
Link ⬇️
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 8d
2/4. Authors say:

“We find far lower prevalence of recorded #LongCovid diagnoses (0.33%) than expected based on self-reported survey data from the UK ONS (3.3%) and from a nationwide Scottish survey (6.6%–10.3%), suggesting significant undercoding in primary care…”

Link ⬇️
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 8d
📣 1/4. Paper out from the UK’s LOCOMOTION study on incidence of #LongCovid diagnosis.
 
🚩 Huge under-recording of Long Covid in primary healthcare records!
 
Big thank you to our Members & co-authors @nikki-s.bsky.social & @ruairidhm.bsky.social for their hard work🙏

Link to paper on below 🧵 ⬇️
Screenshot of research paper title and authors. Header says Health Expectations Open Access An International Journal of Public Participation in Health Care and Health Policy. Below this it says Original Article Open Access. The title of the paper is Understanding the Clinical Characteristics and Timeliness of Diagnosis for Patients Diagnosed With Long Covid: A Retrospective Observational Cohort Study From North West London. The list of authors reads Denys Prociuk, Jonathan Clarke, Nikki Smith, Ruairidh Milne, Cassie Lee, Simon de Lusignan, Ghazala Mir, Johannes De Kock, Erik Mayer, Brendan C. Delaney, LOCOMOTION Consortium. It is dated as First Published on 25 September 2025. The reference is https://doi.org/10.1111/hex.70429.
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 26d
✨ Fireside Chat Ep 24 ✨
📅 Wed 17 Sept | 18:00 BST | YouTube Live

'Muscle & Movement: Rethinking Long Covid & ME/CFS'

Dr Rob Wust and @binitakane.bsky.social on why PEM is nothing like deconditioning and what research reveals about muscle changes in these conditons.

www.youtube.com/watch?v=8i4i...
Fireside Chat Series | Episode 24 | #Mitochondria & #Muscle: Rethinking Long COVID and #ME/CFS
YouTube video by The Long Covid Clinic: What You CAN Do
www.youtube.com
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Reposted by Long Covid Support
nigelrothband.bsky.social
Nigel Rothband @nigelrothband.bsky.social · 27d
As Chair of Long Covid Support, this part of the UK Covid Inquiry feels particularly close to home.

Module 9 of the Inquiry is a crucial moment to ensure that these voices are not lost. The human and economic cost of Long Covid is real, ongoing, and too often overlooked.
longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 28d
1/4 This morning, the UK Covid-19 Inquiry opened Module 9: Economic Response, looking at how government decisions in the early years of the pandemic affected people’s lives. Dr Lucy Moore and Nigel Rothband, Chairs of @longcovidsos.bsky.social and Long Covid Support, were present.

🧵👇
Two people stand in front of white building either side of a blue sign. On the left is a man with glasses in a grey suit. On the right is a woman with warm brown short hair wearing a grey coat and navy trousers. The blue sign says 'UK COVID-19 INQUIRY. Hearing centre'
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Long Covid Support @longcovidsupport.bsky.social · 28d
4/4 We urge the Inquiry to consider the true cost of Long Covid on people’s lives and livelihoods, and that its recommendations reflect this reality.

As ever, a big thank you to Jane Ryan and the entire legal team at @bhattmurphy.bsky.social for all your support.

#LongCovid #UKCovid19Inquiry
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Long Covid Support @longcovidsupport.bsky.social · 28d
3/4 ...to less demanding jobs. Their families have suffered, with financial insecurity and poverty. Their children’s future lives have been changed due to disruptions to their education and to the impacts of insecurities in meeting basic needs such as food, housing, and heating.”
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 28d
2/4 Our joint statement highlights the devastating reality for many in our community:

“Our members have become newly disabled, their lives have been radically altered, they have been unable to work, lost jobs, reduced hours or their symptoms have driven them to move...
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · 28d
1/4 This morning, the UK Covid-19 Inquiry opened Module 9: Economic Response, looking at how government decisions in the early years of the pandemic affected people’s lives. Dr Lucy Moore and Nigel Rothband, Chairs of @longcovidsos.bsky.social and Long Covid Support, were present.

🧵👇
Two people stand in front of white building either side of a blue sign. On the left is a man with glasses in a grey suit. On the right is a woman with warm brown short hair wearing a grey coat and navy trousers. The blue sign says 'UK COVID-19 INQUIRY. Hearing centre'
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Long Covid Support @longcovidsupport.bsky.social · Aug 27
At the launch webinar, Professor Beth Greenhough @oonaghcousins.bsky.social and Dr Maaret Jokela-Pansini shared insights from the research and pilot workshops.

Read the report, watch the webinar and download the toolkit here:

longcovid.org/impact/news/...

#LongCovid #ArtsInHealth
Long Covid Support
To learn more visit LongCovid.org
longcovid.org
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · Aug 27
The Body Mapping Toolkit is designed to support communication, connection and reflection. It gives a gentle introduction to body mapping, for use on your own or in workshops.

Here are some more wonderful examples created by participants 👇
Creative body map collage about living with Long Covid. Creative body map collage about living with Long Covid. Creative body map collage about living with Long Covid. Creative body map collage about living with Long Covid.
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Long Covid Support @longcovidsupport.bsky.social · Aug 27
Body mapping is a creative way to share experiences that words can’t always capture. For many with #LongCovid, symptoms and stigma make it hard to be heard. Body mapping offers a different way to share and connect.

Take a look at the amazing examples below 👇
Creative body map collage about living with Long Covid. Creative body map collage about living with Long Covid. Creative body map collage about living with Long Covid. Creative body map collage about living with Long Covid.
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · Aug 27
✨ New: Long Covid Body Mapping Toolkit ✨

We’re so pleased to share this new resource, co-created with people living with #LongCovid, Long Covid Support and
@ox.ac.uk

It’s designed to help people express and share their experiences.

🧵👇
A collage-style body map artwork showing a human figure filled with words, drawings, and magazine cutouts expressing experiences of Long Covid. The head is topped with the word “Tired” in bold red letters. Other words and phrases include “Help,” “No energy,” “Keep out,” “Travel,” and “You might as well forget all that!” The figure is decorated with colorful lines, crosses, and swirls. At the bottom of the image, text reads: Body Mapping Toolkit Launch, with logos from SoGE (School of Geography and the Environment), Long Covid Support, and the University of Oxford.
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Long Covid Support @longcovidsupport.bsky.social · Aug 23
Find out more about our Research Involvement Consultancy here:

#LongCovid
#MedSky

www.longcovid.org/research/res...
Long Covid Support
To learn more visit LongCovid.org
www.longcovid.org
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · Aug 23
📣 Are you conducting research into #Covid19 or #LongCovid?

Our Research Involvement Consultancy is here to help!

✅ Recruitment

✅ Study design

✅ Patient & Public Involvement & Engagement

Find more information on our website - link below ⬇️
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Long Covid Support @longcovidsupport.bsky.social · Aug 18
@joplatt.bsky.social @jodiegoslingmp.bsky.social @nigelrothband.bsky.social
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Long Covid Support @longcovidsupport.bsky.social · Aug 18
3/3. Is your MP a member of the APPG on #LongCovid? Or are you a MP and would like to join? Find out more here:

www.longcovid.org/impact/appg-...
Long Covid Support
To learn more visit LongCovid.org
www.longcovid.org
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longcovidsupport.bsky.social
Long Covid Support @longcovidsupport.bsky.social · Aug 18
2/3. Minutes from the APPG on #LongCovid July 2025 meeting:

www.longcovid.org/images/Meeti...
www.longcovid.org
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