Long Covid SOS
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longcovidsos.bsky.social
Long Covid SOS
@longcovidsos.bsky.social
2.6K followers 140 following 270 posts
UK based charity advocating for those impacted by #LongCovid
Recognition - Research - Rehabilitation

www.longcovidsos.org
[email protected]

Charity reg no 1199120
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longcovidsos.bsky.social
Long Covid SOS @longcovidsos.bsky.social · Mar 17
We always take a short pause on social media posts after #LongCovidAwarenessDay to let our volunteers, who all have #LongCovid, recover from a very busy day.

After a very difficult week, we’ll be taking a slightly longer break.

We’ll be quieter for a bit & loudly advocating again soon.
Alt text A tribute image with a background of an ocean wave in deep blue and white tones. A rounded rectangular overlay contains white text that reads: A Pause to Honour Ondine Sherwood “We’re heartbroken by the loss of our dear friend. Ondine’s unwavering commitment to improving the lives of people with Long Covid, and the way she always encouraged our close-knit team to do our best, has left a lasting impact on our hearts and the community. In this time of shock and grief, we’re taking a short pause to reflect on her life and the incredible dedication she showed. It’s a chance for us to honour her memory and gather the strength to keep going with the work she cared so deeply about. Thank you for your support. We’ll be back soon, determined to carry on Ondine’s legacy—just as she would have wanted.” At the bottom right corner, the Long Covid SOS logo is displayed in white.
Reposted by Long Covid SOS
tomkindlon.bsky.social
Google translation:

National Decade Against Post-Infectious Diseases: A total of half a billion euros for further research report. Federal Research Minister Bär: "We are opening a new chapter in the research of these diseases"

www-bmftr-bund-de.translate.goog/SharedDocs/K...

#MEcfs #LongCovid
report November 13, 2025 National Decade Against Post-Infectious Diseases : A total of half a billion euros for further research Federal Research Minister Bär: "We are opening a new chapter in the research of these diseases."
November 14, 2025 at 2:13 PM
Reposted by Long Covid SOS
bhanlon15.bsky.social
Medical Dialogues: 'Women are three times more likely than men to get severe long COVID: Here’s why'

'Research published in Cell Reports Medicine reveals key biological differences that may explain why women with long COVID..'

medicaldialogues.in/pulmonology/...
Women are three times more likely than men to get severe long COVID: Here’s why
Research published today in Cell Reports Medicine reveals key biological differences that may explain why women with long COVID-especially those who develop chronic fatigue syndrome-tend to...
medicaldialogues.in
November 14, 2025 at 4:09 PM
longcovidsos.bsky.social
Our wonderful volunteer @helenld.bsky.social appeared on BBC Radio Gloucs yesterday, calling on the government and Health Secretary Wes Streeting to provide research funding and public health preventive action and messaging about #LongCovid
November 14, 2025 at 4:37 PM
longcovidsos.bsky.social
Thanks to our amazing volunteer @helenld.bsky.social for speaking up about just how awful #LongCovid *still* is for so many of us.
November 13, 2025 at 2:53 PM
Reposted by Long Covid SOS
elhopkins.bsky.social
One Public Health department is telling the whole story. Shining a light on those who are being less than transparent! Oopsie!
November 8, 2025 at 11:50 AM
longcovidsos.bsky.social
We are proud to share a deeply meaningful publication: the final paper co-authored by our late co-founder, Ondine Sherwood.

The paper identifies the nine top priorities for Long Covid research. This work honours her legacy and the power of patient-led science. 🧵
ALT text for cover image: An image that says 'frontiers ORIGINAL RESEARCH article Front. Public Health, 06 November 2025 Sec. Public Health Education and Promotion Volume 13 2025 https:/.b/./g/0 Co-creating a social science research agenda for Long Covid. Oonagh Cousins, Maaret Jokela-Pansini, Ella Barnard, Jo Dainow, Nisreen Alwan, Mark A Faghy, Caroline Dalton, Eileen Gilmour, Gail Davies, Ondine Sherwood, lan Patel, Lotus Westerhof, Beth Greenhough. There is a Long Covid SOS logo at the bottom of the image.
November 6, 2025 at 1:01 PM
longcovidsos.bsky.social
Recently we asked our #community to share their experiences of living with #LongCovid. What they told us was powerful, urgent and impossible to ignore.
October 30, 2025 at 5:51 PM
longcovidsos.bsky.social
Protecting others protects us all

With #Covid currently circulating there are steps we can take to prevent ongoing transmission

🏠 Stay at home
😷 Mask up
🧪 Test for Covid
🗣️ Tell others
A teal and green infographic from Long Covid SOS titled “Protecting others protects us all.” It features four sections with icons: 1. A house icon with the text “If you feel ill, stay home – it’s one of the simplest ways to protect others and recover quicker.” 2. A mask icon labelled “N95” with the text “Wear a high quality mask – wear a well-fitting mask, stay away from others and tell people you are ill.” 3. A test icon with the text “Take a Covid test – if symptoms last, a positive result can help you access Long Covid support.” 4. A window icon with the text “Keep indoor air fresh – ventilate by opening windows and using air filters where you can.” At the bottom: “For more information visit www.longcovidsos.org” with the Long Covid SOS logo.
October 27, 2025 at 11:47 AM
longcovidsos.bsky.social
💜 It’s #PoTSAwarenessDay 2025
#Covid uncovered what many already knew — #PoTS changes everything.

Many with #LongCovid are now being diagnosed with #PoTS — causing dizziness, brain fog, racing heart, fatigue + more.

💬 Have you been diagnosed after Long Covid?
Purple gradient to white from left to right graphic featuring concentric circular spiral signifying dizziness. Text in white and purple on the spirals reading: “Covid uncovered what too many already knew — PoTS changes everything.” At the bottom, the Long Covid SOS logo appears in white on the left, with the text “PoTS Awareness Day 25th October 2025” on the right in purple.
October 25, 2025 at 8:50 AM
longcovidsos.bsky.social
Invisible Disabilities Week is Oct 19–25

Not all disabilities are visible - but they deserve recognition, respect & support
For people with #LongCovid, disbelief has real consequences.

Invisible doesn’t mean imaginary.
#InvisibleDisabilitiesWeek

www.longcovidsos.org/post/invisib...
Graphic for Invisible Disabilities Week. The background is a white brick wall with large orange Long Covid SOS stamp design in the right top of wall. Bold stencil-style text reads: “Invisible Disabilities Week. October 19–25 (in black) Listen (dark green) Believe (teal) Support.” is in orange and underlined in black, and the Long Covid SOS logo appears at the bottom right also in black
October 22, 2025 at 7:28 PM
Reposted by Long Covid SOS
georgemonbiot.bsky.social
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
www.theguardian.com
October 8, 2025 at 6:09 AM
Reposted by Long Covid SOS
nisreenalwan.bsky.social
We're inviting people who've engaged with the SLCC webtool (long-covid-care.org.uk) to take part in its evaluation to help us improve the tool &make it more relevant& helpful to pw #LongCovid. This involves a short survey(10-15m)& potentially interview(if interested)
For more info: shorturl.at/ADoh0
October 8, 2025 at 3:28 PM
longcovidsos.bsky.social
Covid infections are climbing again. the only way to prevent #LongCovid is to avoid catching Covid.

There is no cure for Long Covid and repeated infections can make LC worse. Protect yourself & others by reducing your risk of infection. 1/2

Longcovidsos.org
Long Covid SOS infographic titled “The only way to prevent Long Covid is to avoid Covid.” Five teal boxes with orange warning-style icons: mask (N95), house, face with thermometer, ventilation fan, and crossed-out medical cross. Messages: wear a good mask, isolate if ill, test with symptoms, ventilate or meet outside, and remember Long Covid has no cure. Footer: website link and Long Covid SOS logo.
October 3, 2025 at 4:55 PM
longcovidsos.bsky.social
October is #DysautonomiaAwarenessMonth

For many with #LongCovid, dysautonomia means daily struggles with dizziness, palpitations, fatigue & more

We need research, support & compassion
Let’s #MakeNoiseForTurquoise this October

#POTS #Dysautonomia #invisibleillness
Turquoise background with overlapping blue circles. In the centre, a simple illustration of a person with turquoise hair. Text around the person reads: “Dysautonomia Awareness Month.” Circles highlight symptoms: gastrointestinal issues, PoTS, heart palpitations, fatigue, shortness of breath, dizziness, cognitive issues, temperature dysregulation. Fainter circles in the background say and many many many more Long Covid SOS logo at the bottom left in white
October 1, 2025 at 11:49 AM
Reposted by Long Covid SOS
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
longcovidsos.bsky.social
We're at a turning point. Since losing Co-Founder Ondine Sherwood in March ‘25, we need your help to continue our vital work. We’ve launched a funding appeal to hire our first paid team member to keep fighting for those with #LongCovid. Can you help secure our future?
Donate today: shorturl.at/J5aan
Orange background with teal abstract shapes. White bold text reads: “We need your help to keep fighting for those with Long Covid.” At the bottom is the Long Covid SOS logo.
September 25, 2025 at 3:32 PM
longcovidsos.bsky.social
📣Your voice matters. Help shape our future - what brought you to Long Covid SOS? What matters to you now?

Just two minutes could help shape our future:

form.typeform.com/to/WKRgCwn7
Four people sit on chairs against a green wall, each holding a colourful paper speech bubble in front of their face. The bubbles spell out the phrase “Help shape our future.” Above them, a large white speech bubble with the Long Covid SOS logo reads “Your voice matters!” At the bottom, text says “2 minutes to share your thoughts”
September 23, 2025 at 2:44 PM
longcovidsos.bsky.social
Thank you for being part of the Long Covid SOS community. A volunteer-led charity founded by people with #LongCovid, we've been fighting for recognition, research & real support since day one. 4 years on our mission is more vital than ever.

Follow us and watch this space for news & updates…
A gradient teal to dark green background with white text in the centre that reads: “We won’t let those with Long Covid be left behind.” Beneath this, the Long Covid SOS logo appears with the tagline “a lifeline since day one.”
September 18, 2025 at 2:59 PM
Reposted by Long Covid SOS
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
Reposted by Long Covid SOS
longcovidsupport.bsky.social
Our friend Ondine was a powerful advocate for all with #LongCovid.
Working with her in various arenas was a privilege, including with the NHS Long Covid Taskforce, Covid Inquiry, with Parliamentarians & policy makers. She spoke truth to power & championed the hidden. We miss you.
June 19, 2025 at 8:11 PM
Reposted by Long Covid SOS
daltmann.bsky.social
www.theguardian.com/society/2025...
Ondine did such a huge job to get recognition for all with Long Covid👇
Ondine Sherwood obituary
Other lives: Founder of a group campaigning for the recognition of Long Covid
www.theguardian.com
June 19, 2025 at 4:40 AM
longcovidsos.bsky.social
www.theguardian.com/society/2025...
Ondine Sherwood obituary
Other lives: Founder of a group campaigning for the recognition of Long Covid
www.theguardian.com
June 19, 2025 at 6:54 AM
Reposted by Long Covid SOS
longcovidkids.bsky.social
‘Results of this cohort study suggest that symptom patterns were distinguishable across infants/toddlers and preschool-aged children, and from previously studied older children and adults.’

jamanetwork.com/journals/jam...

#PaediatricLongCovid #LongCovidKids #Childhood #RECOVER
May 27, 2025 at 9:28 PM
Reposted by Long Covid SOS
putrinolab.bsky.social
Again for those in the back:
👏🏼 PEM 👏🏼 is 👏🏼 NOT 👏🏼 deconditioning

Symptoms associated with effort expenditure in #LongCOVID, #MECFS and other energy limiting illnesses are physiological, not “preferential”

Thanks to @RobWust for this incredible work.

www.medrxiv.org/content/10.1...
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest
Patients with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suffer from a reduced exercise capacity, skeletal muscle abnormalities and post-exertional malaise (PEM), where...
www.medrxiv.org
May 7, 2025 at 7:30 AM
Reposted by Long Covid SOS
longcovidkids.bsky.social
Skeletal muscle changes in #LongCovid & #MECFS are different to those resulting from inactivity.
A useful thread on this new research.
Please share with anyone who may be interested or
find this helpful in their own advocacy.
threadreaderapp.com/thread/19198...
#LongCovidKids #LCAndMe #SevereME
A screenshot of the research paper 'Skeletal muscle changes in #LongCovid & #MECFS are different to those resulting from inactivity'. A preprint on medRxiv.
May 7, 2025 at 6:26 AM