iiinova — where your digital self keeps evolving

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Katy B @katybrc.bsky.social · 11/05/2026

If theres 1 thing which #MEAwarenessWeek needs to achieve it's for the #ME orgs @meassociation.org.uk & @actionforme.bsky.social +our allies to do everything possible to stop @england.nhs.uk from inflicting the appalling life threatening abuse which Savannah & other #pwME are still subjected to

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Katy B @katybrc.bsky.social · 08/04/2026

We're not meant to carry hard things alone. For some #pwME social media is the only space where they feel seen, heard, supported, validated & understood & for some who are alone while living with #ME, it's where long term isolation is eased. 💙

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Sarah @sarahlizzylou.bsky.social · 04/02/2026

(UK) Everyone wants a life that can move forward. But right now, thousands of people up and down the country are forced to wait 10 years for the right to permanently stay in the place they already call home. Scrap the Barriers. Join me and sign the petition now. act.praxis.org.uk/scrap-the-ba...

act.praxis.org.uk

Scrap the Barriers

Everyone deserves a secure future, no matter where we're from. But right now, thousands of migrants like us are being held back, forced to wait over 10 years for the right to stay permanently in the p...

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Alt National Park Service @altnps.bsky.social · 23/01/2026

Amazing! Way to go Minneapolis!

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Sarah @sarahlizzylou.bsky.social · 13/12/2025

Made it through my first term as a part-time student with LC/ME. Happy to report no major crashes and I’m pretty sure I passed my exams 🎉🥰 #FBLC

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The Canary @thecanaryuk.bsky.social · 28/09/2025

BREAKING: Spain joins the Hague Group to hold Israel accountable over Gaza In an unprecedented move, Spain has announced its intention to join the Hague Group to hold Israeli occupation accountable for genocide www.thecanary.co/global/world...

thecanary.co

BREAKING: Spain joins the Hague Group to hold Israel accountable over Gaza

Comprising 34 countries, Spain has announced its intention to join the Hague Group to hold Israeli occupation accountable for genocide

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Steve Fifield @stevefifield.bsky.social · 16/09/2025

Disability equity should be Iron Clad 💪: Treating everyone appropriately, fairly and giving them the same rights and opportunities for 🏥 healthy outcomes. #NoToDogma #NoToStigma #pwME I’m exited about 💙🙏: #Justice4ME Donate to legal campaign: Justice4ME.uk

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Sarah @sarahlizzylou.bsky.social · 16/09/2025

Yesterday was my first day back at uni after 4yrs off sick. I felt good after, but still took the evening off to rest up. Everyone in class was lovely and the lecturers all gave me a hug, welcoming me back. Partner sent me to bed early and made dinner. No PEM so far 🙌 #LongCovidDiaries #FBLC

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Sarah @sarahlizzylou.bsky.social · 14/09/2025

This is far worse than I ever imagined. Crimes against humanity 😢

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The Canary @thecanaryuk.bsky.social · 09/09/2025

Cops urged to investigate Israeli president Isaac Herzog for war crimes on his visit to the UK Diplomatic immunity should not stop police from interviewing Isaac Herzog and otherwise investigating him over war crimes, the @icjp.bsky.social said www.thecanary.co/uk/news/2025...

thecanary.co

Cops urged to investigate Israeli president Isaac Herzog for war crimes on his visit to the UK

Diplomatic immunity should not stop police from interviewing Isaac Herzog and otherwise investigating him over war crimes

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Sarah @sarahlizzylou.bsky.social · 09/09/2025

Super excited. After almost four years of Long Covid, I’m returning to university in three days time to finish my degree. On a part-time basis as I’m still very ill, but it’s a huge milestone. Wish me luck

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The Canary @thecanaryuk.bsky.social · 03/09/2025

Israel is robbing disabled people in Gaza of their most basic rights The health sector in Gaza is now unable to meet anything more than 1% of the needs of disabled people, thanks to Israel www.thecanary.co/global/world...

thecanary.co

Israel is robbing disabled people in Gaza of their most basic rights

The health sector in Gaza is now unable to meet anything more than 1% of the needs of disabled people, thanks to Israel

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Sarah @sarahlizzylou.bsky.social · 06/08/2025

Glad the DeCode ME study found some useful stuff

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Sarah @sarahlizzylou.bsky.social · 11/06/2025

Rant Just had my check-in with my uni disability adviser. Almost every disability service staff member will no longer be working in 2 weeks. The uni is undergoing a massive restructure and cutting staff because changes to (UK) immigration policy has greatly reduced the number 1/4

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Sarah @sarahlizzylou.bsky.social · 08/04/2025

Anyone in the UK noticing their pension pots are going down because of the orange man across the pond?

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Long COVID Physio @longcovidphysio.bsky.social · 26/03/2025

@longcovidphysio.bsky.social is pleased to support this essential campaign by @longcovidkids.bsky.social Better assessment, care, funding and research are urgently needed for the millions of adults and children living with Long COVID and M.E. #LCandME #FundOurFuture #FundThePlan

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Long COVID Physio @longcovidphysio.bsky.social · 15/03/2025

5 years have passed and millions are affected globally All are still waiting for a cure #LongCovidAwarenessDay

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Disabled People Against Cuts - DPAC @dis-ppl-protest.bsky.social · 13/03/2025

#HandsOffDisabilityBenefits If you’re invited to speak at a meeting about cuts to disability benefits these useful slides with current information & statistics would be a good tool to use Link here: dpac.uk.net/2025/03/hand...

dpac.uk.net

Hands Off Disability Benefit Cut Slides - DPAC

Below are the slides used for the talk Ellen Clifford gave to the Hands Off Disability Benefits! meeting on 9 March 2025.

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Sarah @sarahlizzylou.bsky.social · 03/02/2025

The CDC banned terms news is absolutely terrifying. Can he really get away with this?

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Sarah @sarahlizzylou.bsky.social · 25/12/2024

Merry Christmas all 🎄❤️

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Matthew Todd @matthewtodd.bsky.social · 22/12/2024

The devastation on its way is unimaginable - like nothing humanity has ever witnessed before - and everyone will wish they had been climate activists and ‘hysterics’ when they had the chance. We are in a moment of unprecedented stupidity

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Sarah @sarahlizzylou.bsky.social · 27/11/2024

Sorry I’ve been quiet lately. I’m struggling to maintain a stable baseline. Hopefully will be more active in the new year but for now my🦋 activity is going to be sporadic at best. #LongCovidDiaries

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Scribbler Pen @scribblerpen.bsky.social · 16/11/2024

Reposting the 1st Long Covid starter pack with some additions. Further suggestions welcome 🙏 go.bsky.app/JvVAoFt

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Fen van Rhijn, MD @fvrhijn.bsky.social · 16/11/2024

What's happening in dysautonomia land? Twice in a week I'm hearing that people with severe ME are advised by different eminent dysautonomia experts to gradually sit up more. People with severe ME aren't living horizontally just for shits and giggles?!!

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 14/11/2024

✨This petition will close TOMORROW, Nov 15!✨ We're over 7k-- next stop 10k! In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses. Sign & share widely! US signers: lnkd.in/e99rsvdT International signers: lnkd.in/e3TpjnTE

Black square with white and red writing. Text: #MEAction’s Petition to the NIH to Fund the ME/CFS Roadmap now has over 7,000 signers! Add your voice. Sign now!

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Sarah @sarahlizzylou.bsky.social · 15/11/2024

Wasn’t selected for the UK Long Covid Tocilizumab clinical trial 😞 I know it could have been placebo or a bad reaction but still a little gutted. They’re only recruiting out of 15 specific LC clinics: www.phosp.org/phosp-i/?fbc...

phosp.org

PHOSP

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Eric Topol @erictopol.bsky.social · 14/11/2024

Economic burden of Long Covid in the UK estimated to be >$20 billion per year from real cohort data bmjopen.bmj.com/content/14/1...

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Linda @lindaoh.bsky.social · 13/11/2024

I've made a #CFS #ME #LongCovid starter pack for us newbies. go.bsky.app/FbLo7qc

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Sarah @sarahlizzylou.bsky.social · 11/11/2024

⚠️ #pwME & #pwLC in the UK⚠️ It is vital to have our voices heard as the NHS’ next ten year plan is put together. We need better and safer care pathways as well as clean air and other covid mitigations. Please mobilise your allies to make our voices heard: change.nhs.uk/en-GB/?fbcli...

change.nhs.uk

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Sarah @sarahlizzylou.bsky.social · 10/11/2024

Please sign and share in solidarity with #pwME

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Erin Biba @erinbiba.bsky.social · 09/11/2024

Folks please don’t forget to ALT your images! The more new folks show up here the lower the adoption of ALT is and that’s a bummer cause it means not all Bluesky users can enjoy your images! Here’s how to turn on prompts to remind you to ALT:

Accessibility Settings
Alt text
Require alt text before posting (toggled ON)

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Andrew Gifford @andrewgiffordphoto.bsky.social · 08/11/2024

Starter pack to help find people making art / photos / music / creative writing etc. about ME/CFS and Long Covid. go.bsky.app/L4KNTrs It's in its infancy, so please recommend away re who else should be included, thanks! #MECFS #LongCovid #Art #Photography #Creativity #Writing #pwME #LongHauler

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Kelly @broadwaybabyto.bsky.social · 09/11/2024

Welcome Bluesky newbies!!! Sharing three Long Covid starter packs below - these are great ways to connect with like minded accounts & find people to follow. Remember your feed is driven by the accounts you follow - so follow often & freely! I’m almost done my first starter pack… stay tuned!

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Sarah @sarahlizzylou.bsky.social · 10/11/2024

Hello new followers 👋😊 It seems there’s a mass migration from the blue bird to the sky this week. I will get round to following you back but I’m a bit slow nowadays so please be patient. Feel free to say hi below. I’d love to get to know you.

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Sarah @sarahlizzylou.bsky.social · 09/11/2024

This is so sad but completely unsurprising knowing DWP tactics and the ableist drive to force disabled people into work when they aren’t able to work. It is so wrong 😞

work.it

At Work Srl – Servizi e Soluzioni informatiche

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Zoe Williams @zoesqwilliams.bsky.social · 09/11/2024

Bracing work here from Led By Donkeys. Even if you hunched all this it's devastating to see it laid out www.youtube.com/watch?v=iX3v...

youtube.com

TESLA = TRUMP

YouTube video by Led By Donkeys

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C.H. Romatowski @chromatowski.bsky.social · 19/10/2024

For those interested in following #MEspine conversation, here’s a feed for you!

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Sarah @sarahlizzylou.bsky.social · 06/11/2024

Sending love America 💙😞

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C.H. Romatowski @chromatowski.bsky.social · 05/11/2024

This is pretty bad. Good day to share a Bsky starter pack with friends who might like some help getting started on here. Here’s mine for #NEISvoid, but there are so many more good ones out there. go.bsky.app/KnwWePQ

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Sarah @sarahlizzylou.bsky.social · 29/10/2024

CW: Long Covid featuring heavily in the UK #CovidInquiry today: www.youtube.com/live/HuvrY3Q... Nicola (a physio with Long Covid) gave evidence this morning of her lived experience. Prof Brightling & Prof Evans are witnessing this afternoon. So grateful for the representation and advocacy.

youtube.com

YouTube

Share your videos with friends, family, and the world

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Fe. @nohealthnofun.bsky.social · 25/10/2024

„“You can’t hurry recovery from PEM,” goes the old saying, “no, you just have to wait.” True, and it’s almost impossible to have „good thoughts“ when you know a crash can lead to a permanent lowered baseline.

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liv @livya.bsky.social · 25/10/2024

1000%. I cannot even begin to explain how much time and energy in this house goes towards debating some new obscure bit of research on postviral illness. patients and caregivers need more freedom to try treatments without barriers.

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