📣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...

An opportunity to fund research into #LongCovid? cc @daltmann.bsky.social @binitakane.bsky.social @longcovidsos.bsky.social

Great piece in @washingtonpost.com: “The risk of #LongCovid remains: 
@erictopol.bsky.social.. said he knows people who have been infected within the last three to four months who have long covid. ‘It’s nonstop. People are still getting it,’ he said.”

"Long Covid turns your world upside down" @longcovidsos.bsky.social

#CROI is the Conference on Retroviruses and Opportunistic Infections This year #CROI2025 was in San Francisco, USA. Data on #LongCOVID was presented. So what was the latest science for the field of infection associated chronic conditions? A thread 🧵

inews.co.uk/news/health/... The new LP covid variant is now making up about 60% of cases, no doubt due to lack of availability of vaccines and now we all need an update but UKHSA has taken them away from the majority of clinically vulnerable! @teamlabouruk.bsky.social Why? @eddavey.libdems.org.uk

We’ve signed this letter by @longcovidkids.bsky.social to Wes Streeting & @ashleydaltonmp.bsky.social. Millions suffer complex chronic illnesses without effective care. And no dedicated #LongCovid research funding from Gov. since 2021. Economic impact is mounting. This can’t go on. #FundOurFuture

Jennifer Nuzzo, an epidemiologist and director of the Pandemic Center at Brown University, calls the end of COVID-19 research a “real slap in the face” to the countless patients dealing with long-term health issues from COVID infections.

📣Later this year The Scottish Government is running a public consultation on Long Covid. This is your chance to be heard. 👉 Read our short article to find out why this matters and how to respond once it's live. #LongCovidScotland #LongCovid www.longcovid.scot/blog/pub...

BBC: 'Grief, long Covid, PTSD - my life since lockdown' 'Today, only a foggy memory of that time remains for Mrs. Sharma..living with long Covid and the multitude of health problems that come with it' www.bbc.com/news/article...

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Our beautiful cat, Katniss, is missing! We've looked everywhere for her locally, plus have put up posters and local online adverts. We think she might have jumped in a car or van and ended up further afield. If you are in North London (NW5 and surrounds), please keep an eye out! details below.

Kaylee, vividly recalls being bed-ridden for 3 days when she was 12 after a sudden dizzy spell caused her to fall & hit her head. She said doctors initially failed to identify the cause of her illness- she was not diagnosed until she was 13. @longcovidsupport.bsky.social @longcovidsos.bsky.social

Important to take notice

‘Five years on from the pandemic, long Covid remains a neglected public health legacy’ www.telegraph.co.uk/global-healt... #LongCovid #LongCovidKids @longcovidsupport.bsky.social @longcovidsos.bsky.social @longcovidphysio.bsky.social @binitakane.bsky.social @thereforme.bsky.social

BBC: ''I've been bedbound since catching Covid in 2022' 'A doctor who was left bedbound following a Covid infection has said he feels "abandoned" by the government' "Suddenly I was so fatigued I couldn't get out of bed," Dr Gilbert said www.bbc.com/news/article...

I had no idea there was an awareness day. Good idea tho! I have long COVID.

Very good (short and concise) informative video on #longcovid. #longcovidawareness #longcovidawarenessmonth #postcovid #mythbusting

BBC: ''Five years of long Covid - I fear it will never go' Five years on from falling ill with Covid, Sue Snelson, a retired critical care nurse from Scunthorpe, explains how she has been affected by ongoing symptoms, and fears her condition is only going to get worse www.bbc.com/news/article...

Our thanks to Jane Ryan @bhattmurphy.bsky.social, legal representative for the Long Covid Groups in the UK COVID Inquiry, and @thereforme.bsky.social for this blog. 'Probing an inconvenient truth' www.thereforme.uk/p/probing-an... #LongCovidKids #ThereForME #LongCovid #CovidInquiry #LCandME

Our Digivan has started its journey! First stop Department of Work and Pensions! It’s carrying 1,000 #LongCovid leaflets on board so please come along and take some! 😃 Full route in photo attached.

A wonderful article by Jane Ryan on #LongCovid and the #CovidInquiry. Thank you for your lovely tribute to Ondine: “Ondine was an incredible activist for the Long Covid community and driving force behind our participation in the Inquiry. She is sorely missed.”

Short interview segment on @rteone.rte.ie about the impacts of Long Covid @longcovidadvoc.com @c19lap.bsky.social @longcovidsos.bsky.social @longcovidsupport.bsky.social @irishmecfsassoc.bsky.social @meassociation.bsky.social @meactnet.bsky.social @fndireland.bsky.social

“In 2025, long Covid is the public health crisis no one wants to talk about, taking a wrecking ball to people’s lives, the economy and NHS while those with power pretend there’s nothing to see.” 5 years on, I wrote about long Covid and national denial. www.theguardian.com/commentisfre...

Lancaster Guardian: '‘Be patient and don’t judge’ says Lancaster woman living with Long Covid' Saturday marked International Long Covid Awareness Day..Lancaster Guardian columnist Jane Binnion writes about her experience with the debilitating condition www.lancasterguardian.co.uk/news/people/...

"If the dice lands wrong and it is you or someone you love next, you will hope – at the very least – there will be help on the way. That #LongCovid sufferers know there won’t is not simply the pandemic’s dark shadow, but its mark of shame." @francesryan.bsky.social writing in the @theguardian.com

My lovely girl has Long Covid. We can't just stop talking about covid and doing nothing to prevent it.

Wrote to my MP today about #LongCovid. Here's a transcript should it prompt you and provide some help to do the same. Minimum plea is for at least tacit support & visibility, fifth anniversary, with no help for victims 🆘 Cc @longcovidsos.bsky.social @longcovidadvoc.com @longcovidsupport.bsky.social

While research on Long COVID in India is scarce, studies and people’s experiences suggest that the pandemic has deepened socioeconomic inequalities in the country. Among the hardest hit are marginalized workers, including daily wage laborers and cleaners. bit.ly/3FBuDJK

BBC: 'Huge fall in NHS Long Covid clinics, study finds' 'New research has revealed the number of NHS clinics for people living with Long Covid has more than halved, from a peak of 120 services in 2022 to 46 today' www.bbc.com/news/article...

The Guardian: 'Long Covid is the pandemic’s dark shadow. Why does no one in power in Britain want to talk about it?' 'Five years after the first lockdown, millions of lives are still being ruined by this debilitating disease. You wouldn’t know it' www.theguardian.com/commentisfre...

Yahoo UK: ''Labour is ignoring long COVID suffers like me. I feel like I'm in an abusive relationship' '..O'Hara, who has long COVID, feels deeply frustrated with the government's emerging policies on getting those with long-term sickness back into work' uk.news.yahoo.com/labour-long-...

“If the dice lands wrong and it is you or someone you love next, you will hope – at the very least – there will be help on the way. That long Covid sufferers know there won’t is not simply the pandemic’s dark shadow, but its mark of shame.”

👇 Been educating myself on Long COVID. Great breakdown below, useful to know even if it doesn't impact you directly. It might help you help someone else one day 🙌

Latest @scienceforme.bsky.social News in Brief post has headlines & links to further reading for #MECFS, #LongCovid, & related news, advocacy & research from w/c March 10 Topics: News, advocacy & articles Coming events Research news & commentary & Published research www.s4me.info/threads/news...

“In 2025, Long Covid is the public health crisis no one wants to talk about, taking a wrecking ball to people’s lives, the economy and the health service while those with power pretend there’s nothing to see here.” www.theguardian.com/commentisfre...

🚨 New: Long Covid services are failing patients. A joint report from @longcovidsupport.bsky.social & @longcovidkids.bsky.social reveals: 🛑 Clinics are closing. 🛑 Care is inconsistent & often falling short of NHS commissioning guidelines. Take Action NOW! bit.ly/3FBNMva #LongCovid #ClosingClinics

Five years of Long Covid Links: NBC News www.nbcnews.com/health/healt... US News and World Report: www.usnews.com/opinion/arti... Rolling Stone: www.rollingstone.com/culture/cult... www.s4me.info/threads/news... From the latest Science for ME weekly update #LongCovid #PASC

New Republic: “The Pandemic Never Ended” “Five years later, there are still no approved treatments for long Covid” “I am considered a mild case, yet my life is forever changed” newrepublic.com/article/1927...