Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 09/08/2026Sending best wishes to you Ben! 💚 020
Reposted by Sarah Barley-McMullen (she/her)Esther @elhopkins.bsky.social · 27/04/2026bsky.app/profile/long... 075
Reposted by Sarah Barley-McMullen (she/her)Long Covid SOS @longcovidsos.bsky.social · 15/04/2026As co-authors of the leaflet, we give permission for GPs to use it. Resources from the Royal College of General Practitioners are there to support patients in primary care. If you’re able to share a bit more about what the practice said, we may be able to help support next steps. 132
Reposted by Sarah Barley-McMullen (she/her)Prof Christina Pagel @chrischirp.bsky.social · 10/01/2026This is an important and sobering read about a 1943 American pamphlet warning citizens what fascism in America would look like. Every bit of it is happening now open.substack.com/pub/heatherc...open.substack.comJanuary 9, 2026Beginning in 1943, the War Department published a series of pamphlets for U.S. 8281179
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 21/11/2025Thank you for the invitation to speak! 010
Reposted by Sarah Barley-McMullen (she/her)Royal College of Anaesthetists @rcoanews.bsky.social · 20/11/2025A huge thank you to our speakers in the last session at today's Winter Symposium, @sarahbarleymc.bsky.social, Dr Cliff Shelton, and Dr Helen J Burdett, who have highlighted the disparities between patients and the workforce by recognising the steps towards improvement. 111
Reposted by Sarah Barley-McMullen (she/her)Elizabeth Jacobs, PhD @elizabethjacobs.bsky.social · 27/10/2025RFK Jr. will eliminate as many vaccines as he can. Every step he takes at the CDC is in service of this aim, as well as undermining public health infrastructure overall. He cannot tolerate scientists who know more than he does, so they must go. Another great piece by @melodyschreiber.com.theguardian.comThreat to US vaccines as CDC staff supporting key advisory panel laid offCritics say scientists ‘held hostage’ by RFK Jr as changes mean vaccine development and guidance in peril 23226106
Reposted by Sarah Barley-McMullen (she/her)Dr. Lucky Tran @luckytran.com · 23/09/2025“We are told by leaders that we are the future. But when it comes to the ongoing pandemic, our present is being stolen right in front of our eyes.” Incredible speech by Violet Affleck who warned about the ongoing dangers of COVID & Long Covid, & advocated for masks and clean air at the UN today! 7251331841
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 01/07/2025Yes! You are SO right. It’s such a horrific, shaming and guilt inducing process on top of being unwell and disabled. Proper Reform is needed - not ‘concessions’ #TakingThePIP 111
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 19/06/2025When Ondine asked me to join the Long Covid SOS team, she challenged me to discover new purpose and resilience to live better with Long Covid — and in doing so, she taught me what true advocacy really means. #LongCovidSOS 071
Reposted by Sarah Barley-McMullen (she/her)Prof Danny Altmann @daltmann.bsky.social · 19/06/2025www.theguardian.com/society/2025... Ondine did such a huge job to get recognition for all with Long Covid👇theguardian.comOndine Sherwood obituaryOther lives: Founder of a group campaigning for the recognition of Long Covid 215860
Reposted by Sarah Barley-McMullen (she/her)loscharlos @loscharlos.bsky.social · 27/03/2025“This is an existential threat.” "The #LongCOVID community must band together & resist draconian measures,” the anonymous researcher said. “Advocate for some stability for funding for LC research & care.” — @thesicktimes.bsky.social thesicktimes.org/2025/03/27/r...thesicktimes.orgRECOVER grants for Long COVID pathobiology research are among those cut under new NIH directive - The Sick TimesSome grants for Long COVID pathobiology research in the National Institutes of Health’s RECOVER program are among those rescinded by the federal government this week under a new order to cut all fundi... 18020
Reposted by Sarah Barley-McMullen (she/her)Elke Hausmann @drelke.bsky.social · 27/03/2025Thank you so much Sarah for an incredibly impacting address to the clinicians attending the Clinical Post Covid-19 Society Conference in Birmingham yesterday! #LongCovid youtube.com/watch?v=VuwT...youtube.comSupporting People with Long Covid, and WorkYouTube video by Sarah Barley-McMullen 121
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 18/03/2025Somehow, I managed to keep my PIP today… What a hideous situation to find yourself in - no one chooses to be ill or disabled! @longcovidsos.bsky.social @longcovidsupport.bsky.social @longcovidkids.bsky.social @longcovidphysio.bsky.social 020
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 18/03/2025“Ondine was an incredible activist for the Long Covid community and driving force behind our participation in the Inquiry. She is sorely missed.” @longcovidsos 051
Reposted by Sarah Barley-McMullen (she/her)ThereForME @thereforme.bsky.social · 18/03/2025Today’s #ThereForME blog is from Jane Ryan, legal representative for the Long Covid groups at the UK’s Covid inquiry. As we mark #LongCovidAwarenessDay, Jane reflects on what we’ve seen so far and what we can expect as the inquiry continues to unfold. www.thereforme.uk/p/probing-an... 12713
Reposted by Sarah Barley-McMullen (she/her)Long Covid SOS @longcovidsos.bsky.social · 17/03/2025“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...theguardian.comLong Covid is the pandemic’s dark shadow. Why does no one in power in Britain want to talk about it? | Frances RyanFive years after the first lockdown, millions of lives are still being ruined by this debilitating disease. You wouldn’t know it, says Guardian columnist Frances Ryan 87348
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 15/03/2025#LongCovidAwarenessDay www.independent.co.uk/news/health/...independent.co.ukLong Covid sufferers still too ill to work fear benefits cutsLong Covid sufferers open up about lives destroyed by illness as they accuse government of ignoring them 0111
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 13/03/2025On Tuesday we lost Ondine, the co-founder and CEO of the charity I volunteer for, @longcovidsos.bsky.social Ondine was a force for GOOD. She was clever, articulate and respected. And she was my friend. ❤️🩹 My heart goes out to her family and friends ❤️ I am a better person because I knew Ondine. ❤️🩹 3717
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 10/03/2025What you said. Covid amnesia seems to be the next pandemic 😞 0110
Reposted by Sarah Barley-McMullen (she/her)Richard Branson @richardbranson.bsky.social · 04/03/2025(1/3) It needs repeating: in 1994, Ukraine was persuaded to give up its nuclear weapons to Russia in return for the US, the UK, and Russia guaranteeing Ukraine’s sovereignty, security, and territorial integrity. 17507564322549
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 27/02/2025Organisations who believe in real fairness and the positive power of diversity - believe in DEI 👇🏼👇🏾 000
Reposted by Sarah Barley-McMullen (she/her)Dr. Lucky Tran @luckytran.com · 23/02/2025Brilliant protest. Yosemite National Park workers hung an upside-down American flag — traditionally a symbol of distress or a national threat — thousands of feet off the ground on the side of El Capitan. 100157374160
Reposted by Sarah Barley-McMullen (she/her)Long Covid SOS @longcovidsos.bsky.social · 16/02/2025Reminder of the sale on all of our #LongCovidAwareness fundraising merch continues through Monday 17th - don’t hang around! Click through to our global store here to get ready for International #LongCovid Awareness Day on 15 March longcovidsos.myspreadshop.co.uk 145
Reposted by Sarah Barley-McMullen (she/her)Long Covid SOS @longcovidsos.bsky.social · 13/02/2025And research shows #LongCovid can double the risk of a heart attack www.bhf.org.uk/informations... 083
Reposted by Sarah Barley-McMullen (she/her)Long Covid SOS @longcovidsos.bsky.social · 13/02/2025This news report only highlights how the economic burden of #LongCovid will continue to grow as clinics are closed and key symptoms are ignored or written off as health anxiety. We call on the govt & NHS to recognise and treat #pwLC appropriately Www.longcovidsos.org/bill-of-rightslongcovidsos.orgBILL OF RIGHTS | Long Covid SOSHOME 1154
Reposted by Sarah Barley-McMullen (she/her)Long Covid SOS @longcovidsos.bsky.social · 13/02/2025We were shocked by this Sky News report suggesting with little more than anecdotes that increased presentations at A&E by young people with chest pain is due to health anxiety when chest pain & palpitations are common #LongCovid symptoms 22611
Reposted by Sarah Barley-McMullen (she/her)Long Covid SOS @longcovidsos.bsky.social · 14/02/2025Roses are red, Violets are blue, Long Covid can break your heart, We’d be lost without you Happy Valentine’s Day to our incredible #LongCovid community! Through ups & downs, setbacks and small victories, our community stands strong - offering support, understanding, & hope when it’s needed most. 1177
Reposted by Sarah Barley-McMullen (she/her)Katy B @katybrc.bsky.social · 06/02/2025Please sign, send to your MP & share "Ask your MP to write to the Secretary of State for Work & Pensions re cuts to benefits Disabled people need security & support to move into work when it is right to do so, not cuts & sanctions." z2k.eaction.org.uk/MP-Secretary...z2k.eaction.org.ukAsk your MP to write to the Secretary of State for Work and Pensions 011
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 05/02/2025Judge rules Trump’s executive order discriminates against trans people and violates their constitutional rights… #LGBTQ+ #transrights @prideinbelper.bsky.socialtheguardian.comUS judge temporarily blocks transfer of incarcerated trans women to men’s prisonsJudge rules Trump’s executive order discriminates against trans people and violates their constitutional rights 011
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 22/01/2025This is what faith, courage and allyship look like… 🙏🏼🏳️🌈🏳️⚧️❤️ #LGBTQ+ #WeSeeYou From 6 mins 30secs. youtu.be/31ylIPemGlE?...youtu.beSee moment reverend pleads with Trump to have mercy on immigrantsYouTube video by CNN 010
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 20/01/2025Sending LOVE and COURAGE to every single LGBTQ+ person in American… 💔❤️🩹 We See YOU🏳️🌈🏳️⚧️ You Matter🏳️⚧️🏳️🌈 #lgbtq+ #ThisIsMeLGBTQ+ 020
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 20/01/2025MASSIVE respect to Joe Biden and Kamala Harris for sitting through the TRIPE that Trump is spouting… 🫣😖😞 100
Reposted by Sarah Barley-McMullen (she/her)Carole Bruce @cabruce.bsky.social · 31/12/2024“I reached out to leading clinicians and some of the scientists who dedicate their time and energy, despite pitiful funding, to researching #ME #LongCovid etc I invited them to kindly share a ‘red leaf’ with us. They did not disappoint!” Inspiring 💗theredtreeandme.substack.com'We shall have spring again' - Messages of hope and solidarity for 2025“Wrong will be right, when Aslan comes in sight, At the sound of his roar, sorrows will be no more, When he bares his teeth, winter meets its death, And when he shakes his mane, we shall have spring a... 03512
Reposted by Sarah Barley-McMullen (she/her)Aerin Jacob, PhD @aerinj.bsky.social · 03/01/2025Bravo Senator Paula Simons. “I’m wearing it as a public figure, to give permission to everyone else who needs or wants to mask. I will go on masking, to tell them they are not alone. And to remind everyone else that this thing isn’t done with us yet.” #CovidIsAirborne albertaviews.ca/masking-fearalbertaviews.caMasking Fear - Wearing a Mask -Alberta Views“I just want to thank you,” the woman says. “I want to thank you for wearing a mask.” Her voice echoes in my ears. 3357
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 02/01/2025I have Long Covid. It has given me a nasty autoimmune Desease. Consequently, I am on immunosuppressant medication. I have Flu. I have just been issued antiviral medication by my GP. #LongCovid changes your life beyond recognition. #CleanAir #CovidInjured #ChronicDisability #HappyNewYear2025 0102
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 31/12/2024In 2025… I shall stand for love ❤️ I shall stand for courage 🧡 I shall stand for justice 💛 I shall stand against hate 💚 I will look for truth💙 I will Pray for peace…💜 May we all know peace in 2025. Happy New Year! 🥳❤️💫 #NewYear2025 #LongCovid 0111
Reposted by Sarah Barley-McMullen (she/her)Trish Greenhalgh @trishgreenhalgh.bsky.social · 12/12/2024We wrote a paper about our work for Independent SAGE during the pandemic @independentsage.bsky.social #healthpolicy #medsky 🧪 #academicsky www.nature.com/articles/s41...nature.comIndependent SAGE as an example of effective public dialogue on scientific research - Nature ProtocolsThe members of Independent SAGE reflect on their experience in setting up, developing and running a science communication platform and service to the public during the COVID-19 pandemic 1226294
Reposted by Sarah Barley-McMullen (she/her)Long Covid SOS @longcovidsos.bsky.social · 12/12/2024Our co-founder Ondine Sherwood is quoted in this extensive article on the risks of taking unlicensed & non-prescribed drugs. Our Bill of Rights calls on the government, health services & research funders to guarantee pw #LongCovid the right to safe healthcare www.longcovidsos.org/bill-of-rightslongcovidsos.orgBILL OF RIGHTS | Long Covid SOSHOME 196
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 03/12/2024Here I go again… talking about #LongCovid as though no one knows anything about it… or do they 🤔❤️🩹 #disability www.derbytelegraph.co.uk/news/local-n...derbytelegraph.co.ukI was able-bodied for 51 years until I caught CovidLong Covid is a condition that affects people in different ways, from chronic fatigue to developing life-altering nervous system responses that can leave patients with mobility problems and more 0132
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 01/12/2024📢 Participate in Long COVID Research If you have Long Covid, then Keele University wants to hear from you! 👥 Seeking interview participants (18+), in-person, online, or phone. Your insights are crucial! 📞 For info: 01782 731 794 | fmhs.longcovid@keele.co.uk Thank you! 💙 @longcovidsos 081
Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 30/11/2024How awful… here we are, all exhausted by long covid yet still advocating for recognition and and research - and we’re faced with this load of to use a Boris Johnson adjective - BOLLOCKS!! @longcovidsos 010
Reposted by Sarah Barley-McMullen (she/her)Kim Horstmanshof @kim-h.bsky.social · 29/11/2024Quick flag for any #LongCovid folk doing their Christmas shopping- my friends @longcovidsos.bsky.social have 30% off their fundraising merch today, and then 25% off and free shipping 2-8 Dec Plus lots of #LongCovidAwareness day designs ahead of 15/3 longcovidsos.myspreadshop.co.uk/long+covid+f...longcovidsos.myspreadshop.co.ukLong Covid feels like forever | Long Covid SOSLong Covid feels like forever slogan in a stylised handwriting font with a tattoo-style heart arrow 042