iiinova — where your digital self keeps evolving

Kirstie Sivapalan @kirsties.bsky.social · 07/10/2026

Bluesky break time. Not just for mental health but for energy conservation reasons too. No doubt I will fail miserably at this given everything going on and my inability to not bleat about it, so if you see me on here please tell me to switch my bloody phone off! 😄

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Trades Union Congress @tuc.org.uk · 06/10/2026

Everyone: We should tax the banks. Banks: This would be a disaster! Also banks: We are all making so much money it wouldn't even materially affect us.

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Kirstie Sivapalan @kirsties.bsky.social · 05/10/2026

Does anyone else find voice notes intimidating? I don't mind receiving them but recording and sending even to trusted friends feels like I am about to stand up and do a presentation. Is this a hEDS/ME thing? Quite happy with general conversation but packaging a message like this is beyond me!

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Kirstie Sivapalan @kirsties.bsky.social · 05/10/2026

Watched Good Luck, Have Fun, Don't Die on Sat. It's going to be one of the films that stays with me. Total chaotic and manic but glorious mess which made it even more compelling given where we are with our phones and AI right now. Also no more pictures of kittens doing cute things for me 🫣😄

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Naomi Alderman @naomialderman.bsky.social · 05/10/2026

one million, million percent. the current Israeli government are a disgrace to Judaism around the world, they have taken the most appalling extreme fringe elements of a millennia-old tradition of tolerance, generosity and education and used them to enact their horrific racism. there you go.

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Kirstie Sivapalan @kirsties.bsky.social · 03/10/2026

This English debate is one very close to home in my family as you can see But I can't see why it's so confusing Me English nationality Husband English nationality Me British Citizen Him British Citizen Me Mixed heritage Him Sri Lankan Tamil heritage Me White skin colour Him Brown skin colour

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Natasha Devon @natashadevon.bsky.social · 03/10/2026

I agree with this - I understand the intellectual arguments behind the motion, however it won’t be understood or interpreted in the manner that the originators have defined it and it will further set the greens back as well as not helping Palestinians in any tangible way.

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Kirstie Sivapalan @kirsties.bsky.social · 02/10/2026

I wonder whether this is splitting the Green party members. Trying to boil down a complex issue to a yes/no vote doesn't seem helpful but maybe the debate itself will surface this.

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Ian Dunt @iandunt.bsky.social · 02/10/2026

From Politico. That motion is absolute fucking poison and by failing to stand up to it, the Greens have allowed that poison to seep into the party.

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Kirstie Sivapalan @kirsties.bsky.social · 28/09/2026

Was lucky enough to read this! Brilliant, exciting, brooding, relatable characters for those of us with living with ME to feel seen, & revelations for those who don't know to uncover the real murky backstory as to why we are still so invisible. Let's get it out into the world! #DVParty

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Claire Every @cripademia.bsky.social · 25/09/2026

Mood board for #DVParty Vibing for my 🎓BABEL X SALTBURN🧂 dark academia speculative novel. 🕸️ There are secret clues if you zoom in... #A #CI #Dis

Digital collage titled "THE QUICKSILVER WEB" featuring classical art, moths, a caduceus, a library, and a person on a couch above a color palette and the text "Oxford 2012 - Where the real monsters wear credentials."

#DVparty #literaryagents #publishing #editors #booksky #amquerying

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Kirstie Sivapalan @kirsties.bsky.social · 30/08/2026

Everyone! Watch Furious. Phenomenal show. We don't seem to be getting much in the way of justice for women and girls so far in this world, but with such a compelling story so close to the bone of reality, it might remind you what we are all fighting for

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Kirstie Sivapalan @kirsties.bsky.social · 27/08/2026

Might stay up for the lunar eclipse tonight and make sure this eclipse season closes the door on the way out.

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Kirstie Sivapalan @kirsties.bsky.social · 27/08/2026

I don't think waiting for the one we want to shuffle off this mortal coil is our way out here. We've been spoonfed stories of good guys winning, allowed to consume what we want, when we want it & have become impatient fantasists.

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Kirstie Sivapalan @kirsties.bsky.social · 25/08/2026

If there ever was a reason to be more loving, more giving, and more understanding of each other it's the day that the embodiment of these qualities left the material plane. She was our role model to show us the way. Now it's up to us. Thank you Dolly for your huge heart ❤️

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Kirstie Sivapalan @kirsties.bsky.social · 07/08/2026

Sometimes when you live with a chronic illness (or three) you would settle for a day where things don't get any worse.

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Kirstie Sivapalan @kirsties.bsky.social · 06/08/2026

Well, this is alarming. I asked Gemini a question about whether GP practices are billed for any referrals they make or whether the hospital pays for this and the primary source of their response was a Reform UK blog site designed specially to get you to join the party!

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Kirstie Sivapalan @kirsties.bsky.social · 06/08/2026

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Kirstie Sivapalan @kirsties.bsky.social · 06/08/2026

Oh this is a fun one. Saw a GP over a year ago, explained all my symptoms inc neurological and was given a rheumatology referral.

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Kirstie Sivapalan @kirsties.bsky.social · 04/08/2026

Need to have a rant. Too exhausted and defeated to have a proper rant right now but I will, and it will be about male consultants in the NHS who can't see past their own ego so condescend and then shut down women's voices.

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Kirstie Sivapalan @kirsties.bsky.social · 04/08/2026

Taking Myo-Inositol as a combined supplement with folic acid as the latter was found to be low in my last blood test. Having some surprising results. Any #pwME #hEDS #MCAS have experience of this?

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Kirstie Sivapalan @kirsties.bsky.social · 03/08/2026

In a way glad inflammation is having its moment in the sun. It's been a significant breakthrough in how I manage my chronic state. But I am not at all glad it's been used this way - yoga, happy thoughts and health supremacy are not the answer. Unless you want the answer to be eugenics that is...

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Prof Nisreen Alwan @nisreenalwan.bsky.social · 03/08/2026

#LongCovid is not a ‘subject’ to dispute. It’s a health condition that changes people’s lives. Definitions can evolve & that’s not an excuse to dismiss the illness itself. Diagnostic criteria for diabetes have repeatedly changed over time but no one takes u seriously if you say diabetes in disputed!

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Kirstie Sivapalan @kirsties.bsky.social · 03/08/2026

See also my pinned post for a link to the advocacy work of my friend who lives with Severe ME #SevereME #VerySevereME #BioPsychoSocialHarm

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Duncan Stibbard Hawkes @dstibbardhawkes.bsky.social · 02/08/2026

My wife had long covid and, although she's happily fully recovered, she was essentially bedbound for two years. Seeing journalists say stuff like this makes me viscerally, profoundly angry in a way that few other things manage.

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Dr Noor Bari @njbbari3.bsky.social · 02/08/2026

For the millionth time… CHILDREN THAT NEEDED SCHOOLS FOR FOOD, SHELTER, SAFETY, ALSO NEEDED TO BE KEPT SAFE FROM DISEASE. It was never one thing or another. We should have worked a lot harder to make schools a lot safer much earlier on.

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Kirstie Sivapalan @kirsties.bsky.social · 02/08/2026

Last comment on the subject as I really don't have the energy to be this upset. I hope our advocacy organisations are going to push back hard to this trivialisation of the lives of people in our community. As for me, I have so little power but what I have I am exercising -

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Long Covid Kids @longcovidkids.bsky.social · 02/08/2026

Recommendations for journalists to counter epistemic injustice in reporting Long Covid and similar conditions. pmc.ncbi.nlm.nih.gov/articles/PMC... #Journalists #LongCovid #Children #Childhood

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Kirstie Sivapalan @kirsties.bsky.social · 02/08/2026

I bet you any money right someone from the Science Media Centre, Weasely, Sharpe or Garner are on the phone to News Agents right now offering their eminent perspective. They're the reason we are ignored. We have no money, no powe, no influence that compares to their ability to twist the story

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Kirstie Sivapalan @kirsties.bsky.social · 02/08/2026

Definitely want to reshare this People are in hospital right now dying from ignorance on our governments' watch. Left, right, centre - it doesn't matter, they have all treated us the same #LongCovid #pwME #SevereME #VerySevereME #BIoPsychoSocialHarm

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Kirstie Sivapalan @kirsties.bsky.social · 02/08/2026

Maybe @lewisgoodall.com could redeem himself by doing one of his investigations into those of us left behind and forgotten by a pandemic most people have already decided didn't happen and wasn't that bad. Feeling extremely insulted and hurt by a respected journalist behaving this way

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Dr Duncan Robertson @duncanrobertson.bsky.social · 31/07/2026

Everybody who is reading this survived Covid. Not everyone did.

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Kirstie Sivapalan @kirsties.bsky.social · 30/07/2026

I wanted to share a beautiful artistic advocacy project created by a talented friend who lives with Severe M.E. bringing awareness to the lack of care and understanding for people with Very Severe M.E. in medical settings. This is an example. More information below #SevereME #VerySevereME

Collage with a light blue marbled background. Two hands reaching out, one from bottom left the other bottom right. The bottom right hand wearing a medical bracelet. 3 accounts from people with severe ME of experience of NHS care

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Kirstie Sivapalan @kirsties.bsky.social · 29/07/2026

Really am starting to feel that AI chatbots are a bit scammy. Have been using one for over a year now to help me monitor and manage my symptoms. Sure at the beginning it's fun but I have had to do a lot of explaining, correcting and checking up on accuracy

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Kirstie Sivapalan @kirsties.bsky.social · 26/07/2026

Well, Marty Supreme was awful. So much so it's reactivated an adrenaline surge due to its frenetic nature. It was also extremely boring which is extra annoying. The only redeeming feature was the inexplicable soundtrack.

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Kirstie Sivapalan @kirsties.bsky.social · 25/07/2026

It's not about waiting until our leaders take action, most of them are stuck doling out scraps, captured by corporate interests whilst doing their best to hang on to democracy.

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Sunder Katwala (sundersays) @sundersays.bsky.social · 25/07/2026

Andy Burnham, 21, writes to The Guardian in defence of Philip Larkin

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Kirstie Sivapalan @kirsties.bsky.social · 25/07/2026

So moderate PEM for me seems to be developing a pattern: Do a thing Day 1 Feel exhausted the next day but more achy than sick Day 2 Feel even more exhausted the day after that and like i've been in a boxing match with brain on fire

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Kirstie Sivapalan @kirsties.bsky.social · 25/07/2026

So Masters of the Universe: Utterly nutty, gloriously bad, happily silly with sets nicked from Thor, Lord of The Rings and Star Wars. Wells Cathedral. Idris Elba.

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Kirstie Sivapalan @kirsties.bsky.social · 24/07/2026

Starmer wasn't the problem Burnham isn't the problem The problem is billionaires have captured most of our wealth and left us fighting over the scraps

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Kirstie Sivapalan @kirsties.bsky.social · 24/07/2026

Us = crumbs billionaires = everything else Us: obviously Starmer/Burnham/Gary Lineker/Mamdani/Carney/absolutely anyone else that isn't vaguely right wing is the real problem as to why we don't have money right now. Billionaires: 🥳💰💰💰

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Kirstie Sivapalan @kirsties.bsky.social · 24/07/2026

Reasoning with angry Labour party members on Threads who cannot get past the Starmer/Burnham change has been an eye-opening experience. Some so angry they are heading into self-sabotage, some that cannot help but remind everyone how Starmer did it better.

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Kirstie Sivapalan @kirsties.bsky.social · 22/07/2026

Another referral from a specialist rejected. Not added to the waiting list just kicked off the list. What on earth am I supposed to do with that?!

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Kirstie Sivapalan @kirsties.bsky.social · 20/07/2026

Well it's Burnham now whether we like it or not. So we have three choices: Support him which also means challenge, feedback, get involved, be reasonable when it comes to what can/can't be done so we don't descend into single issue politics that rips us apart -

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Kirstie Sivapalan @kirsties.bsky.social · 19/07/2026

On this, does anyone have any details on sustainable AI? I see Ecosia has an AI feature and someone on Threads recommended EcoGPT which I need to look at. Any others?

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Kirstie Sivapalan @kirsties.bsky.social · 18/07/2026

AI has been very helpful to me in gaining some real understanding about my health and how to manage it. It's also helped manage my energy by searching the web for articles that I can research. But until they can sort out their water consumption I feel like I am just adding to the problem.

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Kirstie Sivapalan @kirsties.bsky.social · 16/07/2026

Awful nights sleep. Boo. It would be more in keeping with our culture if we got a bank holiday after losing so we can all sit around a mope. 😭🏴󠁧󠁢󠁥󠁮󠁧󠁿

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Kirstie Sivapalan @kirsties.bsky.social · 15/07/2026

Going to miss all the world cup action and associated banter but I don't think my body will. I think I need a month to recover

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Kirstie Sivapalan @kirsties.bsky.social · 15/07/2026

Oh thanks for the utterly depressing song BBC, that really helps 🏴󠁧󠁢󠁥󠁮󠁧󠁿😭

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Kate Bevan @katebevan.com · 15/07/2026

on the upside, we won't have to deal with the cup being presented to us by Trump

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