We are off on our Christmas break until January - to restore, recharge & eat too many mince pies! Wishing the community a peaceful & restful holiday ❄️ Thank you to all who have been there for others 🕯️

🐯We are full of "big cat" energy in our reading of Year of the Tiger in memory of Alice Wong. It's iconoclastic, fun and incisive as a laser beam. 🖇️👇to join us on Fable tinyurl.com/3r2ctufh #pedanticzebra #bookclub #booksky

💙 What a shift from @loosewomen.bsky.social 👏 We wrote to them to counter their mocking tones towards Violet Affleck masking. 💙 Here we have Judi Love saying "protect yourself, protect others" in support of masking. 💙 Hope your family recovers soon Judy.

❌ Punitive Attendance Policies are unlawful discrimination. 👉 They breach the Equality Act ignore DfE guidance, and are a safeguarding & public health issue. Schools should not punish children for illness especially during a flu surge. What we received today 😓👇

🧵PUBLIC HEALTH SHOULD NOT BE A CULTURE WAR 😷 It’s bizarre watching politicians, like Kemi Badenoch perform trauma around masks while millions live with the reality of not masking; death, disability, ME, Long Covid. The Guardian are asking for opinions on masking 🖇️👇 /1

❄️ This winter’s flu & Covid surge is exposing how we need effective public health leadership. We’ve sent an updated open letter to @greenparty.org.uk calling for bold, evidence-based leadership on Long Covid, ME & prevention. Read it here 👇 @zackpolanski.bsky.social @adrianramsay.bsky.social

🙏Thank you for listening Visible and for prioritising patient safety. 💙 This is ace trauma-aware governance. 💪 When digital health treats UX as curated space and epistemic harm as real, we all move forward - and Visible becomes an even stronger community partner.

💌 Excellent letter by the Minister for Children & Families @joshmacalistermp.bsky.social to @washable95.bsky.social that recognises that Covid is airborne We just need @ashleydaltonmp.bsky.social & the DHSC to do the same & ensure schools are safe with air filters that: ⬆️ performance ⬆️ attendance

Very concerning development given the history with these characters who continue to attempt to offer psychological interventions for a physical biomedical illness. I hope Visible take our concerns seriously. Thank you @longcovidadvoc.com for raising this.

1️⃣ Visible Health has launched a local clinical trial feature. One of the first surfacing to users is an ACT (Acceptance & Commitment Therapy) trial led by Trudie Chalder, a researcher whose work has been highly controversial in ME. This raises important patient-safety concerns.

🗞️ On Relationships & illness "One of my friends did say to me: ‘This is quite savage, but if I was one of his friends I’d be telling him to think twice before proposing to you, because if this lasts for ever then your relationship will be different for ever." - Jess with #longcovid 🖇️👇

The recordings are up for our interview, On ME Representation, with the brilliant @tinywriterlaura.bsky.social author of Awakened. #pedanticzebra 🖇️ 👇 🍿 Clip: They'd Steal Sleep to Make More Money

We are happy to support @apresj20 by being a signatory on their open letter to the damaging op-ed in Le Mondeo that advocates & pushes a psychosomatic view of biological disease.

It's International Day of Persons with Disabilities. To mark this we are looking at ways to help those house-bound or bed-bound with Long Covid or chronic illness with vital screening & testing. 🇬🇧 /1 🧵👇

How the writing of Tom Stoppard was a catalyst for a medical breakthrough. A demonstration of the fluidity of metaphor, creativity & insight.

🐯 Ready for some big cat energy? Here's What You Can Expect from Year of The Tiger by Alice Wong🧵/1

less than an hour to go until this one, friends in my phone! ☺️

💙📚We're excited to be going live with Laura Elliott @tinywriterlaura.bsky.social this evening at 7pm! Any questions let us know! 🖇️👇

💫Why it is vital that PUBLIC MITIGATIONS to protect people from infection are a priority. #cleanair

🧵1️⃣ It’s UK Budget Day - so here’s a budget #RachelReeves hasn’t announced: a proper Long Covid Budget. We've estimated the real economic burden of Long Covid at £12-15 BILLION A YEAR. At a £ a minute that puts us back in 26,500 BC - the Late Upper Paleolithic 😳 #Budget2026

🧵#CLoCK Update New paper released on #longcovid paediatric fatigue that demonstrates UK research culture has not made the vital steps needed to meet need or understand the disease. Let's critically assess the issues: /1

📺 Exciting News! We will be talking to author Laura Elliott aka @tinywriterlaura.bsky.social about ME representation & more in her debut 'Awakened'. Think Zombies, Tower of London, Neural Chips, Billionaires, the Apocalypse & a slice of ME. Livestream & recordings 🖇️👇

❄️ This Christmas, send more than a card. Sending one of our cards means profits go to vital Long Covid & ME research. 🎄 longcovidadvoc.shop

71 responses in 4 days. Thank you to all hcps who have answered the survey so far. Please keep sharing. You can stop and restart the survey so it does allow for pacing. Thank you for all your insights, so valuable. @physiosforme.bsky.social

🧵 Thread: The Economic Cost of Long Covid – new 2025 study in Nature 1/ A new paper has modelled the economic burden of Long Covid in the U.S. and globally. Spoiler: it’s massive. Here’s a breakdown. 👇

Bereaved families are pursuing all legal action to hold Johnson accountable for his abject failure during the pandemic. "Justice for those we lost means real consequences for those who failed them, and we will not stop until that justice is delivered." #covidinquiry

💙📚 This evening on the #pedanticzebra book club we have an on fire quote from Awakened by @tinywriterlaura.bsky.social 📺Exciting news too we will be chatting to Laura on livestream in a few weeks! Join our #bookclub on fable for friendship & chat 🖇️👇

The UK Covid-19 Inquiry confirms what our communities have lived for years: the government’s pandemic response wasn’t just a failure - it was a historic abandonment. “Too little, too late” doesn’t capture the scale of the harm. /1

💬A poignant quote from @tessamunt.bsky.social MP from the ME debate at Westminster Hall. Transcript now available 🖇️👇

👋We are looking for people with ME's experience of the medical system in the UK c.2012 - especially GET/CBT. Any first hand testimony would be greatly appreciated. It's research for a book & a chance to have your experience inform it's narrative. 🖇️👇 forms.gle/2qxLgWouTNJQ...

Amatica Health are offering over a £1000 worth of testing for teens under 18 with Long Covid/ ME. Google form to apply is here 👇 docs.google.com/forms/u/3/d/...

@ashleydaltonmp.bsky.social response to the ME debate at Westminster Hall called by @tessamunt.bsky.social There was heartfelt testimony from MPs & repeated calls for a: 👉 commissioned NHS service for severe ME 👉 UK equivalent of the German National Decade of Research

🎙️ME Debate TODAY! 🏛️ Westminster Hall 🕓 4.30pm (UK time) Led by @tessamunt.bsky.social MP 📺 To watch:

If anyone is also wondering why major sites are out (including twitter) there's a problem with cloud fire. Good job we are predominantly on Bluesky! www.bbc.co.uk/news/article...

1️⃣ A new Nature Communications study from the RECOVER-Adult consortium tracks how #LongCovid symptoms evolve over 15 months in 3,659 adults infected in the Omicron era. This isn’t just “who has LC” it’s about what path the symptoms take.

#LongCovid in The Independent today about the new #teamclots paper that shows clear biological abnormalities involving microclots + immune activation. Let's unpack the findings 👇 1/

This Winter, we’re dedicating our book club to Alice Wong’s Year of the Tiger. Her legacy lives in her words - and in how we carry them forward. 🐅 We’ll read together, reflect on her advocacy, and discuss the stories, research, and ideas that shaped her work. 🖇️👇

🧵 Rest in power, Alice Wong. @sfdirewolf.bsky.social A trailblazer, a fierce advocate, and a relentless voice for disability rights. Her work changed the landscape for so many. /1

🪩 Excellent news from Germany. €50 million a yr available from 2026-36.

💜 Protecting others is kindness.💜 Kindness isn’t abstract. It’s wearing an N95 on the train. It’s staying home when sick. It’s sending a message to the friend who’s still housebound with Long Covid. #WorldKindnessDay #LongCovid #MaskUp 😷

Excellent news. 🙏 Thank you to all who campaigned for the National Covid Memorial to be preserved.

1/ 🧵 New perspective: Maybe all those yoga classes aren’t fixing fatigue… turns out, in ME/CFS & Long COVID, we may not be stuck in fight/flight at all. 🧘‍♀️ Cort Johnson summarises a new model suggesting low brain norepinephrine (NE) is central to symptoms.

🚸🧵 The rush to deploy AI-generated attendance targets across England’s schools risks treating symptoms, not causes. We’re aiming for “pre-pandemic” normal when many pupils still carry the legacies of it.

Thank you @longcovidadvoc.com for this clear and bold letter to @zackpolanski.bsky.social 🙏🔥 #pwME #LongCovid

💚 OPEN LETTER TO @zackpolanski.bsky.social 💚 Long Covid is a crisis being silenced. Government denial is harming lives & livelihoods. We call for bold system change: patient-led care, biomedical research, centres of excellence & hope for those left behind. Full open letter 👇

🔬🧠Brain‑training games for LC cognitive dysfunction? The RECOVER‑NEURO trial shows they don’t address the underlying pathology. Games can’t fix inflammation, microvascular issues, or neuro‑immune dysfunction - we need interventions that understand the biology not candy crush 🍭

We continue to see lessons about post-acute viral illness not learned. We never see warnings about those who will have long-term sequelae. 'Long Flu' has been dismissed as 'not a thing' by some Drs. But ME can be triggered by a wide range of viruses. www.bbc.co.uk/news/article...

Exulansis -the moment you simply give up trying to explain the in‑between. 📖 This article gives voice to the silent struggle of families living with #LongCovid, where recognition, care and empathy often fail them. www.longcovidadvoc.com/post/exulans...

🧵 Important new study out in Cell Reports Medicine (Shahbaz et al. 2025): 👉 Long Covid with ME/CFS isn’t the same in women and men - biologically. 👉 And it’s not “fatigue.” It’s immune, hormonal, and neurological chaos. Let’s break it down layperson style 👇

🔥This is a killer quote by @tinywriterlaura.bsky.social in 'Awakened': 👉denoting when the CDC 'renamed' ME to CFS in 1988 after the outbreak in Lake Tahoe. #pedanticzebra