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Sarah Barley-McMullen (she/her)

@sarahbarleymc.bsky.social
928 followers 281 following 33 posts

Ill health retired 😞FHEA🎓Christian. Chair, Pride in Belper 🏳️‍🌈🏳️‍⚧️. Chair, Long Covid SOS. JNC. Married to my Wife. ❤️Long Covid-autoimmune/immunocompromised

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Reposted by Sarah Barley-McMullen (she/her)
Esther @elhopkins.bsky.social · 27/04/2026
bsky.app/profile/long...
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Reposted by Sarah Barley-McMullen (she/her)
Long Covid SOS @longcovidsos.bsky.social · 15/04/2026
As 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.
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Reposted by Sarah Barley-McMullen (she/her)
Prof Christina Pagel @chrischirp.bsky.social · 10/01/2026
This 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.com
January 9, 2026
Beginning in 1943, the War Department published a series of pamphlets for U.S.
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Reposted by Sarah Barley-McMullen (she/her)
Royal College of Anaesthetists @rcoanews.bsky.social · 20/11/2025
A 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.
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Reposted by Sarah Barley-McMullen (she/her)
Elizabeth Jacobs, PhD @elizabethjacobs.bsky.social · 27/10/2025
RFK 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.com
Threat to US vaccines as CDC staff supporting key advisory panel laid off
Critics say scientists ‘held hostage’ by RFK Jr as changes mean vaccine development and guidance in peril
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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!
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Reposted by Sarah Barley-McMullen (she/her)
Prof Danny Altmann @daltmann.bsky.social · 19/06/2025
www.theguardian.com/society/2025... Ondine did such a huge job to get recognition for all with Long Covid👇
theguardian.com
Ondine Sherwood obituary
Other lives: Founder of a group campaigning for the recognition of Long Covid
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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.org
RECOVER grants for Long COVID pathobiology research are among those cut under new NIH directive - The Sick Times
Some 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...
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Reposted by Sarah Barley-McMullen (she/her)
Elke Hausmann @drelke.bsky.social · 27/03/2025
Thank 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.com
Supporting People with Long Covid, and Work
YouTube video by Sarah Barley-McMullen
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 20/03/2025
Good. 👇🏼👇🏾
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 18/03/2025
Somehow, 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
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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
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Reposted by Sarah Barley-McMullen (she/her)
ThereForME @thereforme.bsky.social · 18/03/2025
Today’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...
“Instead of accepting long-term ill-health and disability, the government could have approached decisions to ease restrictions armed with data on the impact of long-term morbidity.” Jane Ryan. Legal representative for Long Covid Groups at the Covid inquiry.
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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.com
Long Covid is the pandemic’s dark shadow. Why does no one in power in Britain want to talk about it? | Frances Ryan
Five 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
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 15/03/2025
#LongCovidAwarenessDay www.independent.co.uk/news/health/...
independent.co.uk
Long Covid sufferers still too ill to work fear benefits cuts
Long Covid sufferers open up about lives destroyed by illness as they accuse government of ignoring them
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 13/03/2025
On 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. ❤️‍🩹
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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.
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 27/02/2025
Organisations who believe in real fairness and the positive power of diversity - believe in DEI 👇🏼👇🏾
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 27/02/2025
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Reposted by Sarah Barley-McMullen (she/her)
Dr. Lucky Tran @luckytran.com · 23/02/2025
Brilliant 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.
An upside-down American flag hangs from El Capitan near Yosemite National Park’s Horsetail Fall on Saturday to protest the thousands of federal job cuts made by President Donald Trump’s administration. 
Tracy Barbutes/Special to the Chronicle
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Reposted by Sarah Barley-McMullen (she/her)
Long Covid SOS @longcovidsos.bsky.social · 16/02/2025
Reminder 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
An orange background with silhouetted textured Long Covid SOS logo 
A cream t-shirt on a hanger with an image of a Long Covid Awareness ribbon in grey, black and teal stretching out across the shirt to wrap around a Long Covid SOS lifering with coronavirus silhouette. 
Black text overlay at the top left of the image says 
22% off everything 
11-17 February 
Be Prepared! 

At the bottom right there is black text saying
15 March
#LongCovidAwarenessDay
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Long Covid SOS @longcovidsos.bsky.social · 13/02/2025
And research shows #LongCovid can double the risk of a heart attack www.bhf.org.uk/informations...

Research suggests that Covid-19 can increase the risk of heart and circulatory conditions, like heart attack and stroke, after infection.
A study published in the journal
Arteriosclerosis, Thrombosis, and Vascular Biology. in October 2024 used data from over 11,000 people, with and without existing heart or circulatory conditions, who tested positively for Covid-19 between February and December 2020. This was before the Covid-19 vaccine was available
in the UK.
Compared to nearly 220,000 uninfected people, those infected with Covid-19 were more than twice as likely to have had a heart attack or stroke or died from any cause by October 2022.
For people who were hospitalised with Covid-19, the risk of these events was 4 times higher than for those who did not test positive for the virus.
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Reposted by Sarah Barley-McMullen (she/her)
Long Covid SOS @longcovidsos.bsky.social · 13/02/2025
This 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-rights
longcovidsos.org
BILL OF RIGHTS | Long Covid SOS
HOME
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Reposted by Sarah Barley-McMullen (she/her)
Long Covid SOS @longcovidsos.bsky.social · 13/02/2025
We 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
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Long Covid SOS @longcovidsos.bsky.social · 14/02/2025
Roses 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.
A textured grey concrete wall with a red heart painted on it. The heart has the words “LONG COVID CAN BREAK YOUR HEART” written in capital letters. A deep crack runs through the heart, symbolizing damage. Below, a torn piece of paper appears taped to the wall, displaying a poem in typewriter-style font: “Roses are red, violets are blue. Long Covid can break your heart, we’d be lost without you.” In the bottom right corner, the “Long COVID SOS” logo is visible.
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Katy B @katybrc.bsky.social · 06/02/2025
Please 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.uk
Ask your MP to write to the Secretary of State for Work and Pensions
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 05/02/2025
Judge rules Trump’s executive order discriminates against trans people and violates their constitutional rights… #LGBTQ+ #transrights @prideinbelper.bsky.social
theguardian.com
US judge temporarily blocks transfer of incarcerated trans women to men’s prisons
Judge rules Trump’s executive order discriminates against trans people and violates their constitutional rights
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 22/01/2025
This is what faith, courage and allyship look like… 🙏🏼🏳️‍🌈🏳️‍⚧️❤️ #LGBTQ+ #WeSeeYou From 6 mins 30secs. youtu.be/31ylIPemGlE?...
youtu.be
See moment reverend pleads with Trump to have mercy on immigrants
YouTube video by CNN
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 20/01/2025
Sending LOVE and COURAGE to every single LGBTQ+ person in American… 💔❤️‍🩹 We See YOU🏳️‍🌈🏳️‍⚧️ You Matter🏳️‍⚧️🏳️‍🌈 #lgbtq+ #ThisIsMeLGBTQ+
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 20/01/2025
MASSIVE respect to Joe Biden and Kamala Harris for sitting through the TRIPE that Trump is spouting… 🫣😖😞
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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...
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Aerin Jacob, PhD @aerinj.bsky.social · 03/01/2025
Bravo 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-fear
albertaviews.ca
Masking 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.
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 02/01/2025
I 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
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 31/12/2024
In 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
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Trish Greenhalgh @trishgreenhalgh.bsky.social · 12/12/2024
We wrote a paper about our work for Independent SAGE during the pandemic @independentsage.bsky.social #healthpolicy #medsky 🧪 #academicsky www.nature.com/articles/s41...
nature.com
Independent SAGE as an example of effective public dialogue on scientific research - Nature Protocols
The 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
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 14/12/2024
This.
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Long Covid SOS @longcovidsos.bsky.social · 12/12/2024
Our 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-rights
longcovidsos.org
BILL OF RIGHTS | Long Covid SOS
HOME
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 03/12/2024
Here 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.uk
I was able-bodied for 51 years until I caught Covid
Long 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
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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
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Kim Horstmanshof @kim-h.bsky.social · 29/11/2024
Quick 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.uk
Long Covid feels like forever | Long Covid SOS
Long Covid feels like forever slogan in a stylised handwriting font with a tattoo-style heart arrow
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Reposted by Sarah Barley-McMullen (she/her)
Long Covid Kids @longcovidkids.bsky.social · 27/11/2024
From the closing statement at the UK COVID Inquiry on Children and Young People 27/11/24. Sarah Hannett KC "Long Covid is a new childhood disease whose prevalence is equivalent to childhood diabetes" #LongCovid #LongCovidKids #CovidInquiry
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Elke Hausmann @drelke.bsky.social · 28/11/2024
www.bmj.com/content/387/... Yes, #LongCovid is a heterogeneous condition (as stated somewhere buried in this paper in relation to exercise). So why come to the sweeping conclusions about ‚physical and mental rehabilitation‘ (in other words, exercise and CBT)? A prior agenda, perchance?
bmj.com
Interventions for the management of long covid (post-covid condition): living systematic review
Objective To compare the effectiveness of interventions for the management of long covid (post-covid condition). Design Living systematic review. Data sources Medline, Embase, CINAHL, PsycInfo, Alli...
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Elke Hausmann @drelke.bsky.social · 21/11/2024
bjgplife.com/revisiting-m... #LongCovid #ME Reflections about PEM and pacing, and how psychologising conditions like LC and ME hurts everyone, including doctors
bjgplife.com
Revisiting my book review for BJGPLife – a cautionary tale
Re-reading my review, I can tell that I was very careful even then not to present this approach as a 'cure' for Long Covid, but as a promising approach to manage symptoms better while waiting for a cu
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 16/11/2024
“Never mind the millions of us, including children, living with debilitating long Covid, some for coming up to half a decade, with new patients still joining our ranks (and many of us missing from the workforce)” Thanks Elke! ❤️‍🩹 theguardian.com/world/2024/nov…
theguardian.com
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 10/11/2024
This is what hope looks like… 😊💫🌷
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Amy M. Russell @amymrussell.bsky.social · 07/11/2024
The National Development team for Inclusion are recruiting an evaluation specialist #recruitment #evaluation #LearningDisability www.ndti.org.uk/about-us/ndt...
ndti.org.uk
Evaluation and Learning Lead - NDTi
Join our team. We're looking for an experienced evaluator who wants to make a real difference to people’s lives?
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Prof Christina Pagel @chrischirp.bsky.social · 19/10/2024
Important 🧵on our new peer-reviewed paper: The pandemic is as bad as it ever was for babies - in year to Aug 2023, 6,300 babies under 1 were admitted to hospital wholly or partly BECAUSE of Covid. They are ONLY age group where admissions have NOT gone down over time 1/17
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 20/10/2024
Trying to stay active with Long Covid… today I walked my dog Steve up the road and back! Feeling like a WINNER! 🎉 - oh how my expectations have changed!! 🫣🙄
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Sarah Barley-McMullen (she/her) @sarahbarleymc.bsky.social · 16/11/2023
Today marks the start of DISABILITY HISTORY month. 🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻 Long Covid is a New Disability By raising the profile of Long Covid during Disability History Month, we can be a more inclusive society, one that recognises, supports, and learns from people living with Long Covid 🌻🌻
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LGBTQReads @lgbtqreads.bsky.social · 19/10/2023
Fave Five: Queer Fiction Set in the Middle Ages: lgbtqreads.com/2023/10/19/f... 🌈📚
lgbtqreads.com
Fave Five: Queer Fiction Set in the Middle Ages
Gwen and Art are Not in Love by Lex Croucher (YA) Teach the Torches to Burn by Caleb Roehrig (YA) Emry Merlin by Robyn Schneider (YA) One Night in Hartswood by Emma Denny The Scottish Boy by Alex d��...
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