Long Covid SOS
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longcovidsos.bsky.social
Long Covid SOS
@longcovidsos.bsky.social
2.6K followers 140 following 280 posts
UK based charity advocating for those impacted by #LongCovid
Recognition - Research - Rehabilitation

www.longcovidsos.org
info@longcovidsos.org

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
bhanlon15.bsky.social
ITV: 'Man still living with effects of Long Covid says government response to pandemic was 'inadequate'

'Yanto is now a trustee for the Long Covid support charity, which campaigns in the UK for Long Covid to be recognised.'

www.itv.com/news/wales/2...
www.itv.com
November 20, 2025 at 9:15 PM
Reposted by Long Covid SOS
longcovidkids.bsky.social
“TOO LITTLE, TOO LATE”, VALIDATION FOR PEOPLE WITH LONG COVID
The Covid-19 Inquiry has found that the UK Government should have acknowledged Long Covid and made the risks clear to the public. It has found that by Oct 2020 the UK Government knew #LongCovid was a significant health and policy issue.
November 20, 2025 at 10:37 PM
longcovidsos.bsky.social
From 5:27, listen to #LongCovid lived experience from Jade, Laura about daughter Molly, and Martin.
bhanlon15.bsky.social Billy Hanlon @bhanlon15.bsky.social · 2d
BBC: 'UK Covid Inquiry: Response 'too little, too late'

'We get more details from our reporter and hear from people who suffered from long Covid symptoms.'

www.bbc.com/audio/play/w...
BBC Audio | BBC OS | UK Covid Inquiry: Response 'too little, too late'
The report says a mandatory lockdown could have been avoided
www.bbc.com
November 20, 2025 at 10:00 PM
Reposted by Long Covid SOS
bhanlon15.bsky.social
BBC: 'UK Covid Inquiry: Response 'too little, too late'

'We get more details from our reporter and hear from people who suffered from long Covid symptoms.'

www.bbc.com/audio/play/w...
BBC Audio | BBC OS | UK Covid Inquiry: Response 'too little, too late'
The report says a mandatory lockdown could have been avoided
www.bbc.com
November 20, 2025 at 9:17 PM
Reposted by Long Covid SOS
trishgreenhalgh.bsky.social
Eat out to Help Out was killing people, but they “kept it out of the news”.
November 20, 2025 at 6:53 AM
Reposted by Long Covid SOS
bma.org.uk
23,000 deaths in England could have been prevented in the first wave of Covid if lockdown had started a week earlier, a new report by the Covid Inquiry has found.

Read more in The Doctor Magazine👇
thedoctor.bma.org.uk/articles/hea...
Government response to Covid was ‘too little too late’, inquiry finds
Report says 23,000 deaths could have been avoided with earlier lockdown
thedoctor.bma.org.uk
November 20, 2025 at 8:32 PM
Reposted by Long Covid SOS
tomkindlon.bsky.social
UK:
Transcript for 1-hour Myalgic Encephalomyelitis debate in Westminster Hall (UK Parliament) on Wednesday 19 November 2025 led by @tessamunt.bsky.social

hansard.parliament.uk/commons/2025...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
UK Parliament logo Hansard UK Parliament Hansard Commons: 19 November 2025 Westminster Hall Myalgic Encephalomyelitis Myalgic Encephalomyelitis Volume 775: debated on Wednesday 19 November 2025
November 20, 2025 at 8:38 PM
Reposted by Long Covid SOS
pippacrerar.bsky.social
BREAKING: The UK’s response to Covid was “too little, too late”, a damning official report on the handling of the pandemic has concluded, saying the introduction of a lockdown even a week earlier than happened could have saved more than 20,000 lives.
November 20, 2025 at 4:11 PM
longcovidsos.bsky.social
Our Chair Dr Lucy Moore quoted in the BBC News Live blog on the Covid-19 Inquiry Module 2 Report:

“…those with Long Covid still have more questions than answers.”

#LongCovid
A screen capture from BBc News Live feed time stamped 19:41 Ministers 'slow to acknowledge seriousness of long Covid' Image showing a sign saying “NEED TO REST, FORCED TO PROTEST #RESEARCHLONGCOVID” Photo attributed to GETTY IMAGES Text reads: Today's report also addresses long Covid, and whether the government offered sufficient warning of the risks of the condition. Even once it became clear there were risks, there were "no public health campaigns" focused on this area, the report says. This meant people were "unable to make their own, fully informed decisions about the levels of risk they were prepared to tolerate". Screen capture from BBc News live blog, text reads: "The UK government - in particular Mr Johnson - remained slow to acknowledge the seriousness and prevalence of the condition, " the report adds. It concludes that long-term conditions must be built into any strategy for future pandemics. Long Covid groups have welcomed the inquiry's recognition of those still suffering, but some see it as just the first step. "Our stories do not end with this inquiry and should be a wake-up call for what needs to change now as those with long Covid still have more questions than answers," says Lucy Moore, chair of the charity long Covid SOS.
November 20, 2025 at 9:09 PM
Reposted by Long Covid SOS
longcovidsos.bsky.social
UK Covid-19 Inquiry Module 2 Report: #LongCovid wasn’t just a medical issue, it was a governance failure. Millions were left without recognition or support.

@longcovidphysio.bsky.social @longcovidsupport.bsky.social @longcovidkids.bsky.social
Dark green background with a white speech bubble with the words in green “ Our stories do not end with this Inquiry and should be a wake-up call for what needs to change now as those with Long Covid still have more questions than answers.” Underneath in white “Dr Lucy Moore, Chair of Long Covid SOS”logo with an orange lifering
November 20, 2025 at 5:37 PM
longcovidsos.bsky.social
UK Covid-19 Inquiry Module 2 Report: #LongCovid wasn’t just a medical issue, it was a governance failure. Millions were left without recognition or support.

@longcovidphysio.bsky.social @longcovidsupport.bsky.social @longcovidkids.bsky.social
Dark green background with a white speech bubble with the words in green “ Our stories do not end with this Inquiry and should be a wake-up call for what needs to change now as those with Long Covid still have more questions than answers.” Underneath in white “Dr Lucy Moore, Chair of Long Covid SOS”logo with an orange lifering
November 20, 2025 at 5:37 PM
Reposted by Long Covid SOS
trishgreenhalgh.bsky.social
TOO LITTLE, TOO LATE. For shame, Mr Johnson and the team you pretended to lead. Preventable deaths on your hands. They will not return to us. You live on, rich and vainglorious.
www.theguardian.com/uk-news/2025...
‘Too little, too late’: damning report condemns UK’s Covid response
Report on handling of pandemic contains stinging criticism of ‘toxic and chaotic’ culture inside Boris Johnson’s No 10
www.theguardian.com
November 20, 2025 at 4:22 PM
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