Kirsty 🌻
@kirstysmestory.bsky.social
Living with moderate/severe M.E. 🦋 severely affected by the Pfizer vaccine 💉 in 2021 and health issues from covid infection ‘23
Not anti-vaccine
Not anti-vaccine
Can I connect with mutuals that had #MECFS or #longcovid since a young age and missed out on many milestones and most of their youth?
September 23, 2026 at 5:30 PM
Can I connect with mutuals that had #MECFS or #longcovid since a young age and missed out on many milestones and most of their youth?
@georgemonbiot.bsky.social
Or other journalists willing to write on the human rights violating institutionalisation of chronically Ill minors with M.E. #mecfs #ableism
Or other journalists willing to write on the human rights violating institutionalisation of chronically Ill minors with M.E. #mecfs #ableism
What it was like to have moderate/severe #Myalgicencephalomyelitis
as a young teenager in 2013.
Innocently locked up, abused , punished for missing school due to sickness. This is not only in the Netherlands. Will our stories be seen 🙏🏻 This is systemic abuse not an isolated incident
as a young teenager in 2013.
Innocently locked up, abused , punished for missing school due to sickness. This is not only in the Netherlands. Will our stories be seen 🙏🏻 This is systemic abuse not an isolated incident
September 21, 2026 at 2:09 PM
@georgemonbiot.bsky.social
Or other journalists willing to write on the human rights violating institutionalisation of chronically Ill minors with M.E. #mecfs #ableism
Or other journalists willing to write on the human rights violating institutionalisation of chronically Ill minors with M.E. #mecfs #ableism
Reposted by Kirsty 🌻
I just signed - will you join me? our.actionstation.org.nz/petitions/fa...
Anyone anywhere can sign. Pls share too
Anyone anywhere can sign. Pls share too
Fairness for the Hospitalised: Stop Benefit Cuts After 13 Weeks
We envision a compassionate and equitable society where individuals who are hospitalised can recover without financial hardship or fear of losing their benefits. In this future, we prioritise the dign...
our.actionstation.org.nz
April 3, 2025 at 10:23 PM
I just signed - will you join me? our.actionstation.org.nz/petitions/fa...
Anyone anywhere can sign. Pls share too
Anyone anywhere can sign. Pls share too
Reposted by Kirsty 🌻
#RoseTuesday - A few October blooms on my bike loop. The last phone pic from late August.
#MEcfsEgress #BloomScrolling DailyNaturePics 174
#MEcfsEgress #BloomScrolling DailyNaturePics 174
October 14, 2025 at 5:31 PM
#RoseTuesday - A few October blooms on my bike loop. The last phone pic from late August.
#MEcfsEgress #BloomScrolling DailyNaturePics 174
#MEcfsEgress #BloomScrolling DailyNaturePics 174
Hey everyone it’s my birthday.
I feel to physically sick to celebrate again so it’s another birthday missed, another year not lived. Reality of living with #MECFS
Part of me hopes this will be my last year. I tried to make the best of today until I had a horrible flare up again. I feel alone
I feel to physically sick to celebrate again so it’s another birthday missed, another year not lived. Reality of living with #MECFS
Part of me hopes this will be my last year. I tried to make the best of today until I had a horrible flare up again. I feel alone
October 1, 2025 at 12:40 PM
Hey everyone it’s my birthday.
I feel to physically sick to celebrate again so it’s another birthday missed, another year not lived. Reality of living with #MECFS
Part of me hopes this will be my last year. I tried to make the best of today until I had a horrible flare up again. I feel alone
I feel to physically sick to celebrate again so it’s another birthday missed, another year not lived. Reality of living with #MECFS
Part of me hopes this will be my last year. I tried to make the best of today until I had a horrible flare up again. I feel alone
Reposted by Kirsty 🌻
One of the worst things about living with #MECFS: My mind wants to go out & do stuff (visit a gallery, go to the park) but my body says no. Just getting to the supermarket & back is enough for today. V frustrating 😫 #ChronicIllness
a picture of a large ship with the words me / cfs below it
Alt: a picture of a large ship with the words me / cfs below it & some trite 'self-help' messages that don't work for #MECFS
media.tenor.com
September 19, 2025 at 10:48 AM
One of the worst things about living with #MECFS: My mind wants to go out & do stuff (visit a gallery, go to the park) but my body says no. Just getting to the supermarket & back is enough for today. V frustrating 😫 #ChronicIllness
Reposted by Kirsty 🌻
A Dutch #pwME urgently needs TPN (Total Parenteral Nutrition) because she has gastroparesis and cannot tolerate food or any other form of tube feeding. But the hospital refuses, saying they don’t provide this to pw ME.
Is there anyone in the international community who can help?
Is there anyone in the international community who can help?
August 19, 2025 at 8:07 AM
A Dutch #pwME urgently needs TPN (Total Parenteral Nutrition) because she has gastroparesis and cannot tolerate food or any other form of tube feeding. But the hospital refuses, saying they don’t provide this to pw ME.
Is there anyone in the international community who can help?
Is there anyone in the international community who can help?
🧵Sanne from the Netherlands needs urgent help.
She can no longer eat and can no longer tolerate a feeding tube. Only TPN (nutrition through the blood) can save her. Without it, she will die of starvation. #MEdicalneglect #MECFS
She can no longer eat and can no longer tolerate a feeding tube. Only TPN (nutrition through the blood) can save her. Without it, she will die of starvation. #MEdicalneglect #MECFS
September 17, 2025 at 4:04 PM
🧵Sanne from the Netherlands needs urgent help.
She can no longer eat and can no longer tolerate a feeding tube. Only TPN (nutrition through the blood) can save her. Without it, she will die of starvation. #MEdicalneglect #MECFS
She can no longer eat and can no longer tolerate a feeding tube. Only TPN (nutrition through the blood) can save her. Without it, she will die of starvation. #MEdicalneglect #MECFS
Reposted by Kirsty 🌻
September 10, 2025 at 8:14 PM
Reposted by Kirsty 🌻
I was floating on the sky tonight. If you look really carefully, you can see the eagle that is watching me from the shore. I live for evenings like this.
September 13, 2025 at 2:21 AM
I was floating on the sky tonight. If you look really carefully, you can see the eagle that is watching me from the shore. I live for evenings like this.
Reposted by Kirsty 🌻
Scotland 2025 A study of 13 people with Long COVID found every participant lost income, many faced job loss, rising costs and barriers to benefits.
8% of adults report Long COVID, with highest rates in deprived communities.
www.povertyalliance.org/wp-content/u...
8% of adults report Long COVID, with highest rates in deprived communities.
www.povertyalliance.org/wp-content/u...
www.povertyalliance.org
September 12, 2025 at 9:54 PM
Scotland 2025 A study of 13 people with Long COVID found every participant lost income, many faced job loss, rising costs and barriers to benefits.
8% of adults report Long COVID, with highest rates in deprived communities.
www.povertyalliance.org/wp-content/u...
8% of adults report Long COVID, with highest rates in deprived communities.
www.povertyalliance.org/wp-content/u...
To live everyday with visual disturbances , inflamed feeling in head, chest stabbing pains as a young person and just be told nothing can be done.
September 12, 2025 at 2:43 PM
To live everyday with visual disturbances , inflamed feeling in head, chest stabbing pains as a young person and just be told nothing can be done.
I have begged for help for years . Even with non chronic illness related struggles they don’t help me further.
Cant get EMDR for cptsd , cant get diagnosed with ADHD which affects every aspect of my life, can’t get help with OCD.
I have constant headaches and visual disturbances. They don’t help
Cant get EMDR for cptsd , cant get diagnosed with ADHD which affects every aspect of my life, can’t get help with OCD.
I have constant headaches and visual disturbances. They don’t help
August 25, 2025 at 12:52 AM
I have begged for help for years . Even with non chronic illness related struggles they don’t help me further.
Cant get EMDR for cptsd , cant get diagnosed with ADHD which affects every aspect of my life, can’t get help with OCD.
I have constant headaches and visual disturbances. They don’t help
Cant get EMDR for cptsd , cant get diagnosed with ADHD which affects every aspect of my life, can’t get help with OCD.
I have constant headaches and visual disturbances. They don’t help
🤕 No help , no answers , no treatments
[1/3] Several times a day, I feel intense pressure and an inflamed feeling in my head, usually from being upright too long, it’s especially bad after bending over.
Even without a bad headache, I frequently feel like I have a concussion.
[1/3] Several times a day, I feel intense pressure and an inflamed feeling in my head, usually from being upright too long, it’s especially bad after bending over.
Even without a bad headache, I frequently feel like I have a concussion.
August 4, 2025 at 3:41 PM
🤕 No help , no answers , no treatments
[1/3] Several times a day, I feel intense pressure and an inflamed feeling in my head, usually from being upright too long, it’s especially bad after bending over.
Even without a bad headache, I frequently feel like I have a concussion.
[1/3] Several times a day, I feel intense pressure and an inflamed feeling in my head, usually from being upright too long, it’s especially bad after bending over.
Even without a bad headache, I frequently feel like I have a concussion.
Reposted by Kirsty 🌻
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
#MEKills #HumanRights
July 31, 2025 at 6:45 AM
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
#MEKills #HumanRights
To remember another M.E.
community member and friend who’s life has ended too soon
😔🌹🦋
community member and friend who’s life has ended too soon
😔🌹🦋
July 20, 2025 at 5:01 PM
To remember another M.E.
community member and friend who’s life has ended too soon
😔🌹🦋
community member and friend who’s life has ended too soon
😔🌹🦋
Reposted by Kirsty 🌻
Clip from BBC Look North
Kate Warner, who is housebound with #MECFS, fears benefit cuts could push people who shouldn’t work into jobs that makes them more ill. She says people like her are treated as a problem that costs money — and the government just doesn’t care.
Kate Warner, who is housebound with #MECFS, fears benefit cuts could push people who shouldn’t work into jobs that makes them more ill. She says people like her are treated as a problem that costs money — and the government just doesn’t care.
June 30, 2025 at 2:58 PM
Clip from BBC Look North
Kate Warner, who is housebound with #MECFS, fears benefit cuts could push people who shouldn’t work into jobs that makes them more ill. She says people like her are treated as a problem that costs money — and the government just doesn’t care.
Kate Warner, who is housebound with #MECFS, fears benefit cuts could push people who shouldn’t work into jobs that makes them more ill. She says people like her are treated as a problem that costs money — and the government just doesn’t care.
To be sick but not believed is always being judged and getting belittling remarks when you can't do things like an average healthy person can.
Since childhood I have had very unkind remarks by hundreds of different people. It's hard to then not feel inadequate.
Since childhood I have had very unkind remarks by hundreds of different people. It's hard to then not feel inadequate.
June 25, 2025 at 7:09 PM
To be sick but not believed is always being judged and getting belittling remarks when you can't do things like an average healthy person can.
Since childhood I have had very unkind remarks by hundreds of different people. It's hard to then not feel inadequate.
Since childhood I have had very unkind remarks by hundreds of different people. It's hard to then not feel inadequate.
A few years ago at the age of 24 my health drastically declined and I developed many new symptoms. Please if not #hEDS what’s going on with my connective tissue. I’m also experiencing abnormal partial fatloss , drastic hairloss. Im always told its stress or inactivity idk what to do #MECFS
June 18, 2025 at 12:40 PM
Does anyone have good or bad experiences with low dose Amitriptyline?
They want to prescribe it for pain. #mecfs #longcovid
They want to prescribe it for pain. #mecfs #longcovid
June 14, 2025 at 2:28 PM
Does anyone have good or bad experiences with low dose Amitriptyline?
They want to prescribe it for pain. #mecfs #longcovid
They want to prescribe it for pain. #mecfs #longcovid
I don’t know if this is blood flow related or neurological but I will suddenly lose feeling in my leg(s). Especially after sitting but I’m not even crossing my legs or anything. I had this since I’m 11. Id get up and fall over cause my leg(s) gone numb.
June 8, 2025 at 7:03 PM
I don’t know if this is blood flow related or neurological but I will suddenly lose feeling in my leg(s). Especially after sitting but I’m not even crossing my legs or anything. I had this since I’m 11. Id get up and fall over cause my leg(s) gone numb.
Reposted by Kirsty 🌻
Some of our most powerful Long Covid advocates have dipped out not because they’re better, but because the crab bucket mindset in this community wore them down.
If you’re finding your voice now:
Don’t let someone else’s trauma response silence you
#LongCovid
If you’re finding your voice now:
Don’t let someone else’s trauma response silence you
#LongCovid
June 5, 2025 at 3:36 PM
Some of our most powerful Long Covid advocates have dipped out not because they’re better, but because the crab bucket mindset in this community wore them down.
If you’re finding your voice now:
Don’t let someone else’s trauma response silence you
#LongCovid
If you’re finding your voice now:
Don’t let someone else’s trauma response silence you
#LongCovid