Kirstie Sivapalan

@kirsties

UK #pwME #pwLC #MECFS #LongCovid #PEM (post-exertional malaise) as well as #Politics and other related chat. I use lists to manage my chats here. Feel free to use them or ask to be added

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Kirstie Sivapalan@kirsties· 16d

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

Kirstie Sivapalan@kirsties· May 29

Bucket list moment for me yesterday when I got to go to the @edenproject.bsky.social Incredible place. Very busy with people from all over, and different age groups. Was really impressed how well they cater for disabled people. Always a good sign!

People walking down a paved path towards the giant biomes at Eden Project Cornwall on a sunny day

Kirstie Sivapalan@kirsties· May 17

We can be better. It's a choice. Sometimes it doesn't feel like an easy choice when someone is telling you how you should feel about something Especially, when it's hard to tell what is real any more. But if we want to build a healthy society we do the work. Fight bigotry & fascism not each other.

Kirstie Sivapalan@kirsties· Apr 27

I love red robin blossom 🌸😍

Kirstie Sivapalan@kirsties· Feb 5

“Weak”, “unstable”, “uncertain” - all words you might use to describe a physical manifestation of ME, EDS, MCAS, LC and more. But if you are female, AI is likely to interpret that as fear or anxiety. Gemini explains:

Kirstie Sivapalan@kirsties· Jun 30

Yes, Gemini AI. You get it. Now spread the word! 📢 #pwME

Kirstie Sivapalan@kirsties· Jun 29

Summer reading @francesryan.bsky.social in the shade listening to Beck 😎 Ironic as when I saw Beck a few years ago promoter switched venue to standing only but wouldn't help me find a seat. As is often the case kindly human to rescue as security guy helped us out & sneaked me in a chair from the bar

Kirstie Sivapalan@kirsties· Jun 14

When you're 54 and your mum puts a plaster on for you 🙂

Close up of fingers with middle finger in a brown plaster with smiley face drawn on it

Kirstie Sivapalan@kirsties· May 18

Nearly forgot as was celebrating another kind of blue that today is #BlueSunday the annual Tea Party for ME, so managed to scoff some sweet treats whilst watching the #GoodisonPark send off. Then I donated. Because today is also about making sure we fund the research for #pwME. Donation info below

Close up of a cherry bakewell tart on a blue plate on a wooden coffee table with a TV showing the Everton No16 in the background

Kirstie Sivapalan@kirsties· May 18

Exhibit A 💙

Screen shot of Richarlison IG story showing image of him holding a blue smoke cannister in Everton blue on the pitch at Goodison park. Story is captioned I love you Goodison park 💙

Kirstie Sivapalan@kirsties· May 3

Everton Lady 💙

Lilac t-shirt with the words Respect Celebrate Empower and the simple graphic shape of the Everton tower watermarked in the middle of the writing

Kirstie Sivapalan@kirsties· Mar 26

Thank you Nish Kumar of @podsavetheuk.crooked.com You're one of the only people talking about Long Covid being a direct link to the amount of people unable to work due to sickness in the UK Far too much collective amnesia going on Full episode on Pod Save the World here youtu.be/f3Q6cJc6Z7A?...

Kirstie Sivapalan@kirsties· Mar 26

Good to know that Gemini gets it

Text of Gemini AI response: "The idea that disabled people don't have a valid place in society is rooted in ableism, a form of discrimination that devalues and marginalizes disabled people.
* Challenging ableism is essential for creating a just and equitable society.
I am programmed to be helpful to all people, especially those who are vulnerable. The idea that any group of people are not valid members of society is abhorrent to me."

Kirstie Sivapalan@kirsties· Mar 21

As it's #WorldPoetryDay today I want to write something but due to my general level of health it's been a while since I could find the physical and cognitive power to craft something. So here's what I made earlier which might explain why PIP is going to be almost an impossibility for many #pwME

Screenshot of poem entitled Undercurrent
Text reads: I don’t have an invisible disabilty, I have a disability visibly ignored.

You might, if you want, see it in my eyes if you look close enough; in my voice, with a keen ear.

There’s even, sometimes, a smell. Sickly sweet.

But yes, there are no obvious signs – no chair nor stick, and likely a smile slapped across my face.

Continuation of poem Undercurrent
Text reads: So it might not make sense to you that I claim this word myself –

Disabled. Unseen. With cells that are broken but not limbs. Microcosms in disarray so deeply embedded that the surface stays smooth.

Calm water above deadly currents below. That threatens, always threatens, all life that dares to venture there.

Where it is deathly quiet, and too dark for your naked eye to see.

Kirstie Sivapalan@kirsties· Mar 20

Were you furloughed? Did you think that when the bill was due disabled people would be the ones expected to pay for it? Five years on and for those of us disabled by covid we can never forget. But for those who are lucky enough to not have a daily reminder..? www.theguardian.com/uk-news/2025...

Except from The Guardian. Text reads "says it is striking how little Covid now figures in the public debate about tax and spend, however.

“It’s crazy: there’s a really powerful and actually true argument which is: we had to do loads of stuff during Covid and now we’re having to pay for it – but it’s like we’ve gone through a trauma that no one really wants to talk about, and if we don’t talk about it we can pretend it didn’t happen.”

Separate from the impact on the public finances is the direct, long-term effect of the pandemic on public services, many of which are still working through the practical consequences."

Kirstie Sivapalan@kirsties· Mar 15

Writing my postcards to @ashleydaltonmp.bsky.social and more for #LongCovidAwarenessDay as part of @longcovidadvoc.com campaign We need funding now! #pwME #LongCovid

Top: back of postcard - handwritten text and address
Bottom: front of postcard. Research ME and Long Covid

Set of 3 postcards
Top left: Research ME and Long Covid
Bottom left: long covid devastates song risk it
Right: Long Covid Multi system Devastating Biological 1 in 10

Kirstie Sivapalan@kirsties· Mar 9

Whenever I see the moon like this during the day a little voice in my head whispers "that's no moon"

Gibbous moon in a cloudless bright blue sky. Tips of evergreen trees in foreground

Kirstie Sivapalan@kirsties· Mar 4

Pancake day 2025 with extra #ElbowsUp syrup 🇨🇦

Close up of a bottle of Canadian maple syrup called Buckwud Classic. Background of kitchen space blurred in background

Kirstie Sivapalan@kirsties· Mar 3

Going through a box of stuff from my student days and I think I just found the original "Computer says no" story. This, from The Lady magazine 22 April 1991... Why I have a copy of The Lady magazine from then is a much longer and sometimes bizarre story for another day...

Kirstie Sivapalan@kirsties· Feb 22

This is a great write up of the PVS study. This part in particular stood out to me. It ceratinly has been my experience - like I had all previous big hit infections all at once

Kirstie Sivapalan@kirsties· Jan 9

Sad news about Dyche but probably the right decision and it means I will see more of this guy for a short while! 💙 @talmandaniel.bsky.social another mug for you to rate!

Close up of coffee mug featuring a drawing of Leighton Baines from Everton football club

Kirstie Sivapalan@kirsties· Dec 3

Two faces of ME Left: where you'll mostly find me - bed, neck supported, pained expression Right: Rare dinner out doing normal people things Thanks to @longcovidadvoc.bsky.social for the fab t-shirt from their new merch🤘 🔥 #pwME #MECFSSucks

White woman in 50s, pained expression, shoulder length grey and brown hair sitting up in bed with cushion supporting neck wearing black t-shirt in AC/DC rock style lettering that reads "ME/CFS Sucks"

White women in 50s smiling, hair brown/grey hair tied back sitting on leather high backed chair wearing blue top and cream coloured crochet cardigan

Kirstie Sivapalan@kirsties· Nov 27

Wtf Labour? Your comms is appalling. So if I cannot work due to a health condition I am written off? Not helped to find the appropriate treatment or care, just written off. . . Like a car. Irrecoverable. Don't bother trying to fix, cheaper to get a new one?

WHAT DOES LABOUR'S PLAN TO GET BRITAIN WORKING MEAN FOR YOU?

☑ If you're looking for work, we'll help you find a job and then help you get on in your career

✓ If you have a health condition or disability but don't want to be written off, we will offer you a pathway back to work.

☑ If you're a young person starting out in your career, we'll make sure you are able to learn or earn.

✔If you're an employer looking for talent and potential, we'll help you find the person you need.

Labour

Change begins.

Kirstie Sivapalan@kirsties· Nov 15

Moon mood 💜☁️🌕☁️💙

Picture of the full moon -a large circle of grey, lavender clouds with the full moon surrounded by blue and purple light in the centre. Looks also like the iris of an eye.

Kirstie Sivapalan@kirsties· Nov 12

Taken from a FB group of women supporting women worldwide -a social media post made manifest in someone's neighbourhood! So beautiful. Image reads: I love you. You're probably thinking, "You don't even know me." But if people can hate for no reason, I can LOVE.

Kirstie Sivapalan@kirsties· Nov 7

Got this in our post. Was very confused. Is there an election? Did we miss something? Then I realised - this is probably part of the campaign as well as deliver strategy so we remember they are the ones who will make our lives better. Will it work?

Labour leaflet. Labour choice on left in red and conservative choice in dark blue highlighting policy differences in bullet points (ticks for Labour, crosses for Conservative) with slogan Change Begins

Kirstie Sivapalan@kirsties· Nov 6

Text reads on pink background. Hold onto anyone that needs it today. Thats how we keep going 🙏🫂💕🩷

Kirstie Sivapalan@kirsties· Nov 5

💙🌊 powered by women ♀️

Iconic photo of Kamala Harris at the Democratic Convention in the background with her niece watching in the foreground.

Kirstie Sivapalan@kirsties· Nov 5

Some examples from #EnteredTheChat on 🧵right now. My feed is basically all women supporting women everywhere. Regardless of what happens, this is phenomenal ✊💙♀️

Kirstie Sivapalan@kirsties· Nov 5

If you are on Threads there is a wonderful swell of women from all over supporting & encouraging women in America. Check out the hashtag #EnteredTheChat & add your own message. There will be women who need to know you are with them We are not going back ♀️💙✊