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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]
Posts Replies Media Videos
longcovidsupport.bsky.social
The recently launched Overlapping Illness Alliance is heading to Parliament!

On Tuesday 25 November, we’re hosting our first-ever drop-in session at the Houses of Parliament to talk with MPs about overlapping illnesses and how they can better support their constituents.
Screenshot from the Overlapping Illness Alliance website encouraging people to email their MP. Pink background with white text which invites readers to encourage their MP to attend a drop-in session at the Houses of Parliament on Tuesday 25 November, where MPs will hear about overlapping illnesses and how to support affected constituents. A blue button below the text reads “Write to your MP.”
November 7, 2025 at 8:14 PM
longcovidsupport.bsky.social
Livestream starting today at 6pm GMT

@binitakane.bsky.social @helenoakleigh.bsky.social

It will be recorded if you can't join live.
longcovidsupport.bsky.social Long Covid Support @longcovidsupport.bsky.social · 10d
Ep26 | Long COVID Clinic Fireside Chat
with @binitakane.bsky.social & @helenoakleigh.bsky.social

Hydration, Appetite & Blood Sugar in POTS
🗓️ Wed 5 Nov 18:00 GMT | 📺 YouTube

Dr Binita Kane & @angryhacademic.bsky.social unpack low blood volume, thirst, “low blood sugar” sensations & hunger in POTS.
Promotional graphic for a YouTube livestream titled “Hydration, Appetite, and Blood Sugar in POTS.” On the left is Dr. Kane, and on the right is Dr. Harriet Carroll. Text below reads: “Dr. Kane talks with Dr. Harriet Carroll. LIVE: Wednesday 5th November 2025 18:00 (GMT).” Logos for The Long Covid Clinic and Long Covid Support appear in the center. Bottom banner reads: “The Long Covid Clinic – What You Can Do. YouTube @LCCWYCD.”
November 5, 2025 at 5:59 PM
longcovidsupport.bsky.social
📣 1/4. Today we are proud to launch the Overlapping Illness Alliance, a coalition of charities working to improve recognition, care and support for those living with complex, overlapping conditions.

Find out more below! ⬇️

#OIA #OverlappingIllnesses #JoinedUpAction
Logo consisting of the shapes of three people in different shades of blue, pink and purple overlapping at the base. To the right of this are the words Overlapping Illness Alliance.
November 4, 2025 at 2:51 PM
longcovidsupport.bsky.social
Ep26 | Long COVID Clinic Fireside Chat
with @binitakane.bsky.social & @helenoakleigh.bsky.social

Hydration, Appetite & Blood Sugar in POTS
🗓️ Wed 5 Nov 18:00 GMT | 📺 YouTube

Dr Binita Kane & @angryhacademic.bsky.social unpack low blood volume, thirst, “low blood sugar” sensations & hunger in POTS.
Promotional graphic for a YouTube livestream titled “Hydration, Appetite, and Blood Sugar in POTS.” On the left is Dr. Kane, and on the right is Dr. Harriet Carroll. Text below reads: “Dr. Kane talks with Dr. Harriet Carroll. LIVE: Wednesday 5th November 2025 18:00 (GMT).” Logos for The Long Covid Clinic and Long Covid Support appear in the center. Bottom banner reads: “The Long Covid Clinic – What You Can Do. YouTube @LCCWYCD.”
October 31, 2025 at 11:42 AM
longcovidsupport.bsky.social
Many people with #LongCovid meet the diagnostic criteria for, or have a diagnosis of, ME.

@actionforme.bsky.social’s Big Survey 2025 is for people with #ME, to better understand the condition and improve support.

If that includes you, your input would be hugely valued.

Link below👇
actionforme.bsky.social Action for ME @actionforme.bsky.social · 28d
Our 2025 Big Survey is now open! 🎉

For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/

Thank you for supporting our research💙

🤝in collaboration with
@durhamimh.bsky.social @kacheston.bsky.social
October 22, 2025 at 5:19 PM
longcovidsupport.bsky.social
We’re thrilled to welcome Fleur Roberts as our new In-Person Peer Support Network Lead. Formerly an NHS Wellbeing Coordinator in Cheshire & Merseyside, Fleur brings deep #LongCovid expertise. Huge thank you to Assura for making this role possible.💛
A smiling woman with straight blonde hair, wearing a black top and a shell necklace, sitting indoors on a dark leather seat.
October 15, 2025 at 4:51 PM
longcovidsupport.bsky.social
📣 Starting soon!!

#LongCovid
#BinitaKane

⬇️⬇️⬇️
longcovidsupport.bsky.social Long Covid Support @longcovidsupport.bsky.social · Oct 4
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.
October 8, 2025 at 4:57 PM
Reposted by Long Covid Support
longcovidsupport.bsky.social
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.
October 4, 2025 at 2:50 PM
longcovidsupport.bsky.social
📣 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/
October 6, 2025 at 6:47 PM
longcovidsupport.bsky.social
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.
October 4, 2025 at 2:50 PM
longcovidsupport.bsky.social
📣 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.
September 30, 2025 at 12:10 PM
longcovidsupport.bsky.social
✨ 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
September 12, 2025 at 10:26 AM
Reposted by Long Covid Support
nigelrothband.bsky.social
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 · Sep 10
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'
September 10, 2025 at 5:15 PM
longcovidsupport.bsky.social
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'
September 10, 2025 at 12:26 PM
longcovidsupport.bsky.social
✨ 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.
August 27, 2025 at 11:01 AM
longcovidsupport.bsky.social
📣 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 ⬇️
August 23, 2025 at 7:01 PM
longcovidsupport.bsky.social
1/3. APPG on #LongCovid - July meeting minutes available.

▶️ Guest speaker Prof. Chris Brightling joined discussions on accelerating Long Covid research on drug targets/therapeutics.

▶️ Actions identified re. Covid vaccine eligibility, public health messaging & safe air.

Link below in comments ⬇️
Light background with an inner thin dark frame. Logo for the APPG on Long Covid is at the top. Text below in a box outlined in black reads Minutes Available. Across the bottom is a silhouette of the Houses of Parliament in Westminster, London.
August 18, 2025 at 12:23 PM
longcovidsupport.bsky.social
Congratulations @drjanetscott.bsky.social on your new role, and thank you for all your hard work, continuing to push for appropriate #LongCovid care in Scotland!
drjanetscott.bsky.social Janet Scott @drjanetscott.bsky.social · Jul 28
New role: I'm stepping in as Clinical Lead for Scotland's Long COVID Network!

We're now focused on making these services sustainable while expanding to address post-infection conditions more broadly.

Grateful to patient groups and colleagues whose insights drive this work forward.
July 28, 2025 at 6:43 PM
Reposted by Long Covid Support
nigelrothband.bsky.social
Delighted to have attended my first meeting of the #APPG on Long Covid last week in my new role as Chair of Trustees at @longcovidsupport.bsky.social It was a pleasure to meet @joplatt.bsky.social and take part in a discussion on how we can accelerate research into Long Covid. #LongCovid #APPG
July 21, 2025 at 7:53 PM
longcovidsupport.bsky.social
“NHS England told the BBC it stopped checking whether clinics are still open since passing that responsibility to ICBs.”

Our Trustee @margaretohara.bsky.social:
“If they’re not being sanctioned they’ll just do what they like. And what they want to do is use the money for other services”

#LongCovid
July 15, 2025 at 5:45 PM
longcovidsupport.bsky.social
📣 1/2. Now Recruiting in UK - #LongCovid Treatment Trial!

PHOSP-I is trialling Tocilizumab to treat ongoing inflammation.

🔴 Recruitment includes people who were not hospitalised with acute Covid

🔴 Several sites open - see map

Find out more on our website - link below ⬇️
Square image with white background and blue frame. In top left corner is the PHOSP I logo. On the left is a map of Engrand, Scotland and Wales with several areas highlighted in red. Header says Long Covid Treatment Trial Now Recruiting. There is a list of sites. University Hospitals of Leicester NHS Trust. Guy's & St. Thomas' NHS Foundation Trust. Kings College Hospital NHS Foundation Trust. University College London Hospitals NHS Foundation Trust. Oxford University Hospitals NHS Foundation Trust. Sheffield Teaching Hospitals NHS Foundation Trust. Cambridge University Trust, Addenbrookes. University Hospitals of Birmingham NHS Foundation Trust. NHS Greater Glasgow and Clyde. Manchester University Hospitals NHS Foundation Trust. Northern Care Alliance NHS Foundation Trust. North Bristol NHS Foundation Trust. University Hospitals of Coventry and Warwickshire NHS Trust. Cardiff and Vale University Health Board. At bottom is the study's website address www.phosp.org/phosp-i/ and QR code.
July 11, 2025 at 3:17 PM
longcovidsupport.bsky.social
💖 1/3. We’ll be so excited to see Rob and Joey take off on their 114-mile tandem cycle to 13 Shropshire cricket clubs!

They are supporting friend and fellow cricketer Charlie who has #LongCovid, and we're thrilled they've chosen our cause🙏

Find out more below!⬇️

#Fundraising
Long Covid Support logo and the words Fundraising Spotlight on a pale blue and green background. There is a photo of two men in white cricket kit, hats and glasses standing together smiling with a grass pitch in the background. On the left is Rob and on the right is Joey. Text below the photo reads JOEY AND ROB 114 MILE TANDEM BIKE RIDE AROUND 13 SHROPSHIRE CRICKET CLUBS 23 AUGUST 2025. Long Covid Support is a registered charity in England and Wales 1198938.
July 11, 2025 at 9:30 AM
longcovidsupport.bsky.social
1/2. The next APPG on #LongCovid meeting is taking place on 15th July 2025 at 4:15pm.

Contact your MP now and ask them to attend!

More info. on the APPG can be found on their webpage - link below ⬇️
Black background with inner cream coloured frame. The APPG on Long Covid logo is at the top. At the bottom is a sketch of a street with a phone box and lampposts with the Houses of Parliament at the end. Text across the centre in cream coloured writing reads Meeting Tuesday 15th July 2025 4:15pm to 5:15pm Is your MP attending?
July 10, 2025 at 11:18 AM
longcovidsupport.bsky.social
The government is pushing ahead with the harmful Universal Credit changes that will drive disabled people deeper into poverty.

We stand with disability organisations in calling for this Bill to be scrapped and for any reforms to be co-produced with disabled people. #StopTheBill
July 8, 2025 at 8:36 AM
longcovidsupport.bsky.social
Due to the efforts of disabled individuals, advocacy groups, charities throughout the UK, and supportive MPs, the government was compelled on Tuesday to accept significant amendments to the unsafe and problematic Welfare Bill.

🧵1/4
July 3, 2025 at 12:30 PM