Long Covid SOS
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longcovidsos.bsky.social
Long Covid SOS
@longcovidsos.bsky.social
2.7K followers 140 following 290 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.
longcovidsos.bsky.social
For everyone affected by #LongCovid

We see you
We believe you
We’re still here, & we’re still campaigning for change

What change means for us:
Recognition of Long Covid
Access to safe and appropriate care
Investment in research
Rights-based support that reflects real lives

See you in 2026!
Dark green New Year image with gold fireworks and stars. Large gold text reads “2026” with “Best wishes for the New Year” above in teal. Below, white text says: “Wishing you a New Year filled with healing, compassion and realistic hope. Be kind to yourselves, we’re by your side.” Long Covid SOS logo appears at the bottom.
January 1, 2026 at 12:47 AM
longcovidsos.bsky.social
Season’s greetings from Long Covid SOS 🤍

This year has tested us deeply, but we remain determined to honour Ondine’s legacy and continue our work for everyone living with #LongCovid.

Sending love and thanks to our friends and supporters. Please be kind to yourselves this Christmas. 🎄✨
December 23, 2025 at 7:55 PM
Reposted by Long Covid SOS
rfh1955.bsky.social
"The ICB told councillors that "most patients" recover within four to nine months. But a recent review in The Lancet, external said 71% of people with the condition had symptoms for more than a year."

Well the ICB is lying then.
longcovidsos.bsky.social Long Covid SOS @longcovidsos.bsky.social · Dec 4
Dr Lucy Moore, chairperson of the Long Covid SOS charity, said: "If the motivation behind the closure is an ideology that long Covid is a thing of the past or over in months, it sets a concerning precedent.

#LongCovid #Charity #BBC

www.bbc.co.uk/news/article...
Closure of Mid Essex long Covid service criticised by charities
A charity says the condition is
www.bbc.co.uk
December 4, 2025 at 8:22 PM
longcovidsos.bsky.social
Dr Lucy Moore, chairperson of the Long Covid SOS charity, said: "If the motivation behind the closure is an ideology that long Covid is a thing of the past or over in months, it sets a concerning precedent.

#LongCovid #Charity #BBC

www.bbc.co.uk/news/article...
Closure of Mid Essex long Covid service criticised by charities
A charity says the condition is
www.bbc.co.uk
December 4, 2025 at 8:18 PM
Reposted by Long Covid SOS
brebis.bsky.social
"People living with Long COVID are using health services far more frequently than before their diagnosis, driving annual healthcare costs to more than twice their previous levels, according to a major new analysis published in the Journal of the Royal Society of Medicine."
Study Shows Long COVID Patients Face More Than Double the Healthcare Costs After Diagnosis - Womenhealthdomain.com
People living with Long COVID are using health services far more frequently than before their diagnosis, driving annual healthcare costs to more than twice
www.womenhealthdomain.com
December 3, 2025 at 6:42 AM
longcovidsos.bsky.social
"We can no longer do this alone. The crisis is hiding in plain sight and we need help to act." - Dr. Lucy Moore, Chair of Long Covid SOS

We need urgent support to continue the fight for research, better treatments & recognition for people with #LongCovid

tinyurl.com/DonateLCSOS
A teal graphic with white text that reads: “Living with Long Covid forced us to raise our voices to be heard. With your support, we can continue campaigning for the recognition and the rights that people with Long Covid deserve.” Behind the text is a faint circular Long Covid SOS lifering logo in red and green. The Long Covid SOS logo appears at the bottom with the tagline “campaigning for us all.”
December 2, 2025 at 7:45 PM
longcovidsos.bsky.social
GIVING TUESDAY 🤝
We’re asking the #LongCovid community to share & repost our donation link & help us reach a wider audience. (Or donate!)

Your support helps us:
✨ Raise awareness
✨ Advocate for better care
✨ Give people living with Long Covid a voice

localgiving.org/fundraising/...
Image announcing ‘December 2nd is Giving Tuesday’ with green and orange text on a textured paper background. Below, the Long Covid SOS logo is displayed, with the organisation’s initials forming the word ‘SOS’ around the Giving Tuesday heart symbol. Faint white Long Covid SOS lifering motifs appear in the background.
December 2, 2025 at 8:58 AM
Reposted by Long Covid SOS
cbarbermd.bsky.social
🧵New observational study:
Starting metformin within 6 days of COVID was linked to half the long COVID risk compared with patients given other meds (fluvoxamine, fluticasone, ivermectin, montelukast): 4.0% vs 8.5% (aRR 0.47). Small study, but aligns with #BlueSky #MedSky #NewsSky #IDSky #SciSky 1/2
Metformin at the time of Covid-19 infection and risk of Long Covid: A Target Trial Emulation Study
Background: Our objective was to evaluate metformin prescribed at the time of SARS-CoV-2 infection on the risk of developing Long Covid (LC) in electronic health record data. Methods: We conducted a n...
shorturl.at
November 30, 2025 at 7:46 PM
longcovidsos.bsky.social
We stand in solidarity with our Dutch friends at today’s PAIS protest in Den Haag. We ask our friends in the Dutch #LongCovid and #mecfs communities to support this powerful call for recognition and action
marjonantoons.bsky.social Marjon Antoons @marjonantoons.bsky.social · Nov 30
Nog steeds zijn er mensen die niet hersteld zijn van een Covid-besmetting. Het leven gaat aan hen voorbij en geld voor onderzoek naar LongCovid dreigt op te raken. @volkskrant.nl schreef een indrukwekkend artikel.
Wil je je steun betuigen? Kijk op hetpaisprotest.nl en doe mee om 14.00
#NietHersteld
667 dagen in het donker: hoe postcovidpatiënten uit de maatschappij verdwenen
Ze leven achter gesloten gordijnen, aan bed gekluisterd. Voor de allerziekste postcovidpatiënten in Nederland is er nog steeds geen passende hulp of zicht op genezing. Vier van hen gunden ons een blik...
www.volkskrant.nl
November 30, 2025 at 10:27 AM
Reposted by Long Covid SOS
longcovidsupport.bsky.social
Thank you to our Chair @nigelrothband.bsky.social & Trustee @joda.bsky.social for attending @ukcovid-19inquiry.bsky.social on this important day.
Even bigger thanks to our Member Mike Ormerod for all his work and all the effort it will take giving evidence this afternoon. 🙏
#LongCovid
#CovidInquiry
Photograph of our Founding Trustee Jo Dainow and Chair Nigel Rothband standing either side of a sign that says UK Covid-19 Inquiry Hearing Centre. Both are wearing face masks, ready to go in to the Inquiry building.
November 26, 2025 at 2:15 PM
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 · Nov 20
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