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
· Jan 29
If we are moving into a world that chooses to celebrate cruelty, then any act of kindness is an act of resistance. "Be kind" is no longer a fluffy Instagram meme, it's a revolutionary call to action.
You know our often memed in-joke about "lab tests being normal"? Well here is a fun twist -
Got a letter from cardio today.
Your test was not normal
...
...
See you in two years!
What the...? 👀
Got a letter from cardio today.
Your test was not normal
...
...
See you in two years!
What the...? 👀
November 21, 2025 at 11:28 AM
You know our often memed in-joke about "lab tests being normal"? Well here is a fun twist -
Got a letter from cardio today.
Your test was not normal
...
...
See you in two years!
What the...? 👀
Got a letter from cardio today.
Your test was not normal
...
...
See you in two years!
What the...? 👀
Thank you @longcovidadvoc.com for this clear and bold letter to @zackpolanski.bsky.social 🙏🔥
#pwME #LongCovid
#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 👇
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 👇
November 11, 2025 at 1:33 PM
Thank you @longcovidadvoc.com for this clear and bold letter to @zackpolanski.bsky.social 🙏🔥
#pwME #LongCovid
#pwME #LongCovid
Current summary of my experience with my GP practice right now:
Me: I don't think you know enough about #pwME
Them: We're not specialists, we offer primary care only.
Me: Ok. Since I know more than you, refer me to this person who also knows a lot more & has offered to help
Them: No.
Me: 👀
Me: I don't think you know enough about #pwME
Them: We're not specialists, we offer primary care only.
Me: Ok. Since I know more than you, refer me to this person who also knows a lot more & has offered to help
Them: No.
Me: 👀
October 31, 2025 at 1:06 PM
Current summary of my experience with my GP practice right now:
Me: I don't think you know enough about #pwME
Them: We're not specialists, we offer primary care only.
Me: Ok. Since I know more than you, refer me to this person who also knows a lot more & has offered to help
Them: No.
Me: 👀
Me: I don't think you know enough about #pwME
Them: We're not specialists, we offer primary care only.
Me: Ok. Since I know more than you, refer me to this person who also knows a lot more & has offered to help
Them: No.
Me: 👀
Reposted by Kirstie Sivapalan
Media flurry about the biomarker test for ME. 🧪
It's a promising discovery stage study but what needs to be done to turn this into a validated biomarker?! 🧵
🖇️
translational-medicine.biomedcentral.com/articles/10....
It's a promising discovery stage study but what needs to be done to turn this into a validated biomarker?! 🧵
🖇️
translational-medicine.biomedcentral.com/articles/10....
October 8, 2025 at 12:05 PM
Media flurry about the biomarker test for ME. 🧪
It's a promising discovery stage study but what needs to be done to turn this into a validated biomarker?! 🧵
🖇️
translational-medicine.biomedcentral.com/articles/10....
It's a promising discovery stage study but what needs to be done to turn this into a validated biomarker?! 🧵
🖇️
translational-medicine.biomedcentral.com/articles/10....
It is past time that we held GP practices to account for their own actions rather than blame the NHS. They are private sector companies on a contract with the public sector. They are Ltd companies by shares and some are making a profit. And yet we are expected to support them without question.
October 7, 2025 at 10:47 AM
It is past time that we held GP practices to account for their own actions rather than blame the NHS. They are private sector companies on a contract with the public sector. They are Ltd companies by shares and some are making a profit. And yet we are expected to support them without question.
And of course as soon as I post this then M.E happens. So here we are 2 months later, and it's finally ready.
Not as gross as the title sounds, unless you are squeamish, or a Virgo.
open.substack.com/pub/kirsties...
Not as gross as the title sounds, unless you are squeamish, or a Virgo.
open.substack.com/pub/kirsties...
September 24, 2025 at 12:06 AM
And of course as soon as I post this then M.E happens. So here we are 2 months later, and it's finally ready.
Not as gross as the title sounds, unless you are squeamish, or a Virgo.
open.substack.com/pub/kirsties...
Not as gross as the title sounds, unless you are squeamish, or a Virgo.
open.substack.com/pub/kirsties...
Reposted by Kirstie Sivapalan
DECODE ME has published its results.
Massive congratulations to @cgatist.bsky.social and team in Edinburgh.
Let’s hope this is the start of a paradigm shift in how we view, research and treat this dreadful illness.
www.decodeme.org.uk/initial-dna-...
Massive congratulations to @cgatist.bsky.social and team in Edinburgh.
Let’s hope this is the start of a paradigm shift in how we view, research and treat this dreadful illness.
www.decodeme.org.uk/initial-dna-...
Initial DecodeME DNA Results - DecodeME
06 August 2025 The DecodeME team is delighted to announce that the initial analysis of 15,579 DNA samples is complete, and we have important news to share. Main findings from our analysis Your genes ...
www.decodeme.org.uk
August 6, 2025 at 6:50 PM
DECODE ME has published its results.
Massive congratulations to @cgatist.bsky.social and team in Edinburgh.
Let’s hope this is the start of a paradigm shift in how we view, research and treat this dreadful illness.
www.decodeme.org.uk/initial-dna-...
Massive congratulations to @cgatist.bsky.social and team in Edinburgh.
Let’s hope this is the start of a paradigm shift in how we view, research and treat this dreadful illness.
www.decodeme.org.uk/initial-dna-...
🏴✊✨
Meiselas: Donald Trump is being protested all across Scotland... You saw a protest in Edinburgh. There are protests in communities across Scotland...Let me show you this, where the speaker says, “As for Mr. Trump, we could smell your stink the moment that you landed”...
July 26, 2025 at 9:36 PM
🏴✊✨
Reposted by Kirstie Sivapalan
Anti-Trump protestors on Sky News,
"We should not be opening Scotland or the UK to somebody with Trump's background"
"Trump is an abhorrent human being with no saving graces"
"We should not be opening Scotland or the UK to somebody with Trump's background"
"Trump is an abhorrent human being with no saving graces"
July 26, 2025 at 8:09 PM
Anti-Trump protestors on Sky News,
"We should not be opening Scotland or the UK to somebody with Trump's background"
"Trump is an abhorrent human being with no saving graces"
"We should not be opening Scotland or the UK to somebody with Trump's background"
"Trump is an abhorrent human being with no saving graces"
Reposted by Kirstie Sivapalan
South Park is getting canceled after this lmao.
July 24, 2025 at 3:59 AM
South Park is getting canceled after this lmao.
A necessary hard-hitting piece by @juliadoubleday.bsky.social
If this is you, if you are still acting like it's a cold and getting offended by people who want to you to mask or test, well, all I can say is ignore this at your own peril.
When you know, you know, & by then it's already too late
If this is you, if you are still acting like it's a cold and getting offended by people who want to you to mask or test, well, all I can say is ignore this at your own peril.
When you know, you know, & by then it's already too late
"Imagine being so harmed by an infection that everyone around you refers to as harmless that you can’t walk more than 500 steps a day. Imagine you have to plan your week around taking a shower (sitting down)."
The Pandemic Has Been a Portal (for a few of us)
It's true that most people keep choosing "normalcy". But the COVID conscious community is showing us a radical new way forward, that centers care
www.thegauntlet.news
July 22, 2025 at 5:52 PM
A necessary hard-hitting piece by @juliadoubleday.bsky.social
If this is you, if you are still acting like it's a cold and getting offended by people who want to you to mask or test, well, all I can say is ignore this at your own peril.
When you know, you know, & by then it's already too late
If this is you, if you are still acting like it's a cold and getting offended by people who want to you to mask or test, well, all I can say is ignore this at your own peril.
When you know, you know, & by then it's already too late
UK Government approach to #pwME - a suggested tagline for their Comms
"Getting ready to get ready for the potential to explore getting ready to make a plan"
Can add in "we are very clear" for extra emphasis
"Getting ready to get ready for the potential to explore getting ready to make a plan"
Can add in "we are very clear" for extra emphasis
July 22, 2025 at 4:19 PM
UK Government approach to #pwME - a suggested tagline for their Comms
"Getting ready to get ready for the potential to explore getting ready to make a plan"
Can add in "we are very clear" for extra emphasis
"Getting ready to get ready for the potential to explore getting ready to make a plan"
Can add in "we are very clear" for extra emphasis
Getting ready to write a blog again:
📝 New topic (ish)
🏡 New home
🙄 Same sarcasm
📝 New topic (ish)
🏡 New home
🙄 Same sarcasm
July 22, 2025 at 12:26 PM
Getting ready to write a blog again:
📝 New topic (ish)
🏡 New home
🙄 Same sarcasm
📝 New topic (ish)
🏡 New home
🙄 Same sarcasm
Government released this today #pwME
Leads with chronic fatigue
Not one mention of PEM
So to any journalists writing about this:
ME/CFS is *not* about fatigue. It is a multisystemic condition with a constellation of symptoms of which fatigue is just one.
www.gov.uk/government/n...
Leads with chronic fatigue
Not one mention of PEM
So to any journalists writing about this:
ME/CFS is *not* about fatigue. It is a multisystemic condition with a constellation of symptoms of which fatigue is just one.
www.gov.uk/government/n...
Boost in support for patients with chronic fatigue syndrome or ME
Better care for patients living with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, with plans to invest in research and offer closer to home.
www.gov.uk
July 22, 2025 at 8:38 AM
Government released this today #pwME
Leads with chronic fatigue
Not one mention of PEM
So to any journalists writing about this:
ME/CFS is *not* about fatigue. It is a multisystemic condition with a constellation of symptoms of which fatigue is just one.
www.gov.uk/government/n...
Leads with chronic fatigue
Not one mention of PEM
So to any journalists writing about this:
ME/CFS is *not* about fatigue. It is a multisystemic condition with a constellation of symptoms of which fatigue is just one.
www.gov.uk/government/n...
Enjoyed Heads of State. Silly, implausible, old-fashioned good guys beating the bad guys fun. And that's really not a spoiler if you have watched any 90s action movies...
July 18, 2025 at 11:58 PM
Enjoyed Heads of State. Silly, implausible, old-fashioned good guys beating the bad guys fun. And that's really not a spoiler if you have watched any 90s action movies...
Reposted by Kirstie Sivapalan
Experience: I am the world champion of ‘doing nothing’
Experience: I am the world champion of ‘doing nothing’
The Space-Out competition involves sitting still for 90 minutes – no sleeping, no noise, no checking phones
www.theguardian.com
July 18, 2025 at 5:34 AM
Experience: I am the world champion of ‘doing nothing’
Reposted by Kirstie Sivapalan
I can’t say definitively that it is, but MY GOD does it read that way.
This sure reads like a confession to me:
Donald: We have certain things in common, Jeffrey.
Jeffrey: Yes, we do, come to think of it.
Donald: Enigmas never age, have you noticed that?
Jeffrey: As a matter of fact, it was clear to me the last time I saw you.
Donald: We have certain things in common, Jeffrey.
Jeffrey: Yes, we do, come to think of it.
Donald: Enigmas never age, have you noticed that?
Jeffrey: As a matter of fact, it was clear to me the last time I saw you.
July 17, 2025 at 11:04 PM
I can’t say definitively that it is, but MY GOD does it read that way.
Looking forward to the word "bawdy" trending everywhere tomorrow
July 17, 2025 at 11:15 PM
Looking forward to the word "bawdy" trending everywhere tomorrow
Trump's doc has stated that apart from venous insufficiency all other blood tests are normal.
So he probably does have Long Covid then 🙄
So he probably does have Long Covid then 🙄
July 17, 2025 at 8:28 PM
Trump's doc has stated that apart from venous insufficiency all other blood tests are normal.
So he probably does have Long Covid then 🙄
So he probably does have Long Covid then 🙄
Apropos to nothing - venous insufficiency has been diagnosed in people with Long Covid...
July 17, 2025 at 6:50 PM
Apropos to nothing - venous insufficiency has been diagnosed in people with Long Covid...
A week in and sadly montelukast is not going great. Even a 5mg dose
Worsening sinus headaches
More difficult to control emotions
That "unreality" feeling is back
Feeling more anxious, worsening insomnia
I really could cry 😭
Worsening sinus headaches
More difficult to control emotions
That "unreality" feeling is back
Feeling more anxious, worsening insomnia
I really could cry 😭
Well, a whole year after going to my GP for help, I am being prescribed something for what has been reluctantly agreed as likely #MCAS symptoms. Starting a course of #montelukast today. Child size dose, just in case
Shouldn't have to be this much of a battle
Shouldn't have to be this much of a battle
July 11, 2025 at 1:27 PM
A week in and sadly montelukast is not going great. Even a 5mg dose
Worsening sinus headaches
More difficult to control emotions
That "unreality" feeling is back
Feeling more anxious, worsening insomnia
I really could cry 😭
Worsening sinus headaches
More difficult to control emotions
That "unreality" feeling is back
Feeling more anxious, worsening insomnia
I really could cry 😭
"being in the middle ground or just wanting a cup of tea and a State that will support you with dignity when we are at our most vulnerable is okay. But I suppose that doesn’t make a good book"
Brilliant piece from @longcovidadvoc.com 🔥
Brilliant piece from @longcovidadvoc.com 🔥
🗞️ Latest article on the revelations of Raynor Winn's 'The Salt Path' & what it means for the perception of illness.
🎧 Audio available
#thesaltpath
🎧 Audio available
#thesaltpath
The Choice of The Salt Path - Inspiration Porn or Malevolent Malingerer?
The divergent social perceptions that The Salt Path offered - Saint or Sinner - was never a fair binary for people with illness or, from what it seems, rooted in reality.
www.longcovidadvoc.com
July 10, 2025 at 10:54 PM
"being in the middle ground or just wanting a cup of tea and a State that will support you with dignity when we are at our most vulnerable is okay. But I suppose that doesn’t make a good book"
Brilliant piece from @longcovidadvoc.com 🔥
Brilliant piece from @longcovidadvoc.com 🔥
Reposted by Kirstie Sivapalan
Miss Rachel continues to have more of a moral backbone than 99% of public figures
July 10, 2025 at 8:31 PM
Miss Rachel continues to have more of a moral backbone than 99% of public figures
Very late to watching For All Mankind on Apple but loving it so far. Just the type of engaging character-driven show I need right now.
July 10, 2025 at 8:22 PM
Very late to watching For All Mankind on Apple but loving it so far. Just the type of engaging character-driven show I need right now.
Waiting for the Prime day sale so can buy something that's price matched at John Lewis is my way of rebelling against the oligarchy today.
July 9, 2025 at 2:38 PM
Waiting for the Prime day sale so can buy something that's price matched at John Lewis is my way of rebelling against the oligarchy today.