Kirstie Sivapalan
@kirsties.bsky.social
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
https://writingandme.com/
https://open.substack.com/pub/kirstiesi
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
https://writingandme.com/
https://open.substack.com/pub/kirstiesi
Pinned
Kirstie Sivapalan
@kirsties.bsky.social
· Jul 30
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
This is an example. More information below
#SevereME #VerySevereME
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! 😄
October 7, 2026 at 1:24 PM
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! 😄
Reposted by Kirstie Sivapalan
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.
Banks: This would be a disaster!
Also banks: We are all making so much money it wouldn't even materially affect us.
October 6, 2026 at 12:56 PM
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.
Banks: This would be a disaster!
Also banks: We are all making so much money it wouldn't even materially affect us.
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!
October 5, 2026 at 2:05 PM
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!
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 🫣😄
Also no more pictures of kittens doing cute things for me 🫣😄
October 5, 2026 at 12:06 PM
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 🫣😄
Also no more pictures of kittens doing cute things for me 🫣😄
Reposted by Kirstie Sivapalan
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.
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.
The thing that gets me about these lurid anti-Zionist statements, like the one the Greens just passed, is that it is *so fucking easy* to criticise the Israeli government without engaging in that type of language.
October 5, 2026 at 11:25 AM
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.
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.
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
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
October 3, 2026 at 12:00 PM
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
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
Reposted by Kirstie Sivapalan
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.
The "Zionism is racism" motion, to be debated at the Green Party conference tomorrow, will not advance the Palestinian cause one inch. But, if adopted, it would marginalise and discredit the party. There are powerful ways to confront the genocide. Toxic gesture politics isn't one of them.
October 3, 2026 at 11:26 AM
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.
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.
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.
October 2, 2026 at 10:14 AM
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.
Reposted by Kirstie Sivapalan
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.
October 2, 2026 at 7:24 AM
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.
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
Let's get it out into the world!
#DVParty
September 28, 2026 at 9:42 AM
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
Let's get it out into the world!
#DVParty
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
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
August 30, 2026 at 1:49 PM
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
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
Might stay up for the lunar eclipse tonight and make sure this eclipse season closes the door on the way out.
August 27, 2026 at 3:20 PM
Might stay up for the lunar eclipse tonight and make sure this eclipse season closes the door on the way out.
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.
August 27, 2026 at 2:10 PM
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.
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 ❤️
Thank you Dolly for your huge heart ❤️
August 25, 2026 at 10:18 PM
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 ❤️
Thank you Dolly for your huge heart ❤️
Sometimes when you live with a chronic illness (or three) you would settle for a day where things don't get any worse.
August 7, 2026 at 10:26 AM
Sometimes when you live with a chronic illness (or three) you would settle for a day where things don't get any worse.
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!
August 6, 2026 at 12:45 PM
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!
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!
August 6, 2026 at 12:26 PM
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!
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.
August 6, 2026 at 11:57 AM
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.
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.
August 4, 2026 at 5:59 PM
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.
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...
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...
The wellness world’s favorite buzzword has gone federal.
For those of us with real inflammatory disorders, the misinformation isn’t just annoying—it’s harmful.
For those of us with real inflammatory disorders, the misinformation isn’t just annoying—it’s harmful.
The great inflammation panic
The wellness world's favorite buzzword has gone federal. For those of us with real inflammatory disorders, the misinformation isn't just annoying—it's harmful.
www.motherjones.com
August 3, 2026 at 10:40 PM
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...
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...
Reposted by Kirstie Sivapalan
#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!
Long covid is a disputed subject, at best.
August 3, 2026 at 8:16 PM
#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!
See also my pinned post for a link to the advocacy work of my friend who lives with Severe ME
#SevereME #VerySevereME
#BioPsychoSocialHarm
#SevereME #VerySevereME
#BioPsychoSocialHarm
It's Severe ME Awareness Week 2026
It is estimated that at least 404,000 people in the UK have ME/CFS and around 25% of these people may have severe or very severe symptoms for prolonged periods.
Find out more: https://meassociation.org.uk/about-the-mea/campaigns/severe-me-week/
#SevereME
It is estimated that at least 404,000 people in the UK have ME/CFS and around 25% of these people may have severe or very severe symptoms for prolonged periods.
Find out more: https://meassociation.org.uk/about-the-mea/campaigns/severe-me-week/
#SevereME
August 3, 2026 at 10:52 AM
See also my pinned post for a link to the advocacy work of my friend who lives with Severe ME
#SevereME #VerySevereME
#BioPsychoSocialHarm
#SevereME #VerySevereME
#BioPsychoSocialHarm
Reposted by Kirstie Sivapalan
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.
Long covid is a disputed subject, at best.
August 2, 2026 at 12:52 PM
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.