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!

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. 🎄✨

"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.

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...

"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."

"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

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/...

🧵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

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

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

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...

“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.

From 5:27, listen to #LongCovid lived experience from Jade, Laura about daughter Molly, and Martin.

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...

Eat out to Help Out was killing people, but they “kept it out of the news”.

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...

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

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.

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

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

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

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...

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

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/...

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

Thanks to our amazing volunteer @helenld.bsky.social for speaking up about just how awful #LongCovid *still* is for so many of us.

One Public Health department is telling the whole story. Shining a light on those who are being less than transparent! Oopsie!

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. 🧵

Recently we asked our #community to share their experiences of living with #LongCovid. What they told us was powerful, urgent and impossible to ignore.

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

💜 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?

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...

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...

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

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

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

📣 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 🧵 ⬇️

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

📣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

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…

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. 🧵👇

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.

www.theguardian.com/society/2025... Ondine did such a huge job to get recognition for all with Long Covid👇

‘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

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 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

wiesen auf: ➡️ Mitochondriale Dysfunktion ➡️ Veränderte Muskelfaserzusammensetzung ➡️ Veränderte Kapillarversorgung Diese Veränderungen konnten bei gesunden Personen, die strenger Bettruhe unterworfen waren, nicht repliziert werden! Danke 🙏🏼 Rob Wüst

🔺Symptom free infections can have lasting impacts. 🔺Prevention is 🔑 #CleanAir, masks, vaccines, staying home when sick all help. 🔺Long-term monitoring strategies needed. @ashleydaltonmp.bsky.social @longcovidsupport.bsky.social @longcovidsos.bsky.social www.nature.com/articles/s41...

Long Covid is very Long www.thelancet.com/journals/lan...