Sign in

Kirsty 🌻

@kirstysmestory.bsky.social
117 followers 217 following 73 posts

Living with moderate/severe M.E. 🦋 severely affected by the Pfizer vaccine 💉 in 2021 and health issues from covid infection ‘23 Not anti-vaccine

PostsRepliesMedia
Reposted by Kirsty 🌻
George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
17925401731
Reposted by Kirsty 🌻
Patient Dreams @patientdreams.bsky.social · 24/09/2026
"Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed" -George Monbiot #MECFS www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
141
Kirsty 🌻 @kirstysmestory.bsky.social · 23/09/2026
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?
120
Kirsty 🌻 @kirstysmestory.bsky.social · 21/09/2026
@georgemonbiot.bsky.social Or other journalists willing to write on the human rights violating institutionalisation of chronically Ill minors with M.E. #mecfs #ableism
030
Reposted by Kirsty 🌻
Rhi Rhi @rhiarhiarhi.bsky.social · 03/04/2025
I just signed - will you join me? our.actionstation.org.nz/petitions/fa... Anyone anywhere can sign. Pls share too
our.actionstation.org.nz
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...
011
Reposted by Kirsty 🌻
Richard Lewis @z3r0gravitas.bsky.social · 14/10/2025
#RoseTuesday - A few October blooms on my bike loop. The last phone pic from late August. #MEcfsEgress #BloomScrolling DailyNaturePics 174
Description by Gemini 2.5 Flash: A close-up, sunlit vertical photo of a single, classic, creamy-white rose (Rosa genus) in full bloom. The petals are tightly packed and ruffled in the center, catching the sunlight and casting soft shadows that highlight the flower's form. In the background, there are hints of green leaves, a small rose bud, a few dried, brown petals, and a patch of bright blue sky.Description by Gemini 2.5 Flash: A close-up vertical photo of two intensely fuchsia-pink roses with a dense cluster of green leaves behind them. The front rose is in focus, showing slightly ruffled petals with a few scattered pale yellow-green marks, which could indicate minor damage or fading. Behind it, a second pink rose is slightly out of focus. In the upper right and lower right background, clusters of tiny reddish-brown flower buds belonging to another plant, possibly a Sedum or stonecrop, are visible.Description by Gemini 2.5 Flash: A close-up, sunlit vertical photo of a pair of white roses in full bloom. The primary rose, in sharp focus, has many ruffled petals that catch the warm afternoon light, with a cluster of visible gold-brown stamens at its center. A second, partially obscured white rose is visible just above it. The background is a mix of blurred, dark green leaves and brown branches.Description by Gemini 2.5 Flash: A detailed, horizontal close-up of a single rose bloom featuring a striking blend of colors, primarily a deep, rich salmon pink to coral color in the center, fading to a lighter peach pink at the edges. The rose is fully open, with numerous softly curved petals. The background is a mix of sun-dappled, blurred green and brown foliage and what appears to be a light-colored paved pathway in the distance.
061
Kirsty 🌻 @kirstysmestory.bsky.social · 01/10/2025
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
160
Kirsty 🌻 @kirstysmestory.bsky.social · 24/09/2025
🇳🇱 Hulp/advies nodig #mecvs #mecfsNL #neglect
000
Reposted by Kirsty 🌻
New London Boy 🏳️‍🌈🏳️‍⚧️ @newlondonboy.bsky.social · 19/09/2025
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
media.tenor.com
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
091
Reposted by Kirsty 🌻
Nele @nelehelena.bsky.social · 19/08/2025
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?
74540
Kirsty 🌻 @kirstysmestory.bsky.social · 17/09/2025
🧵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
A picture of Sanne before and after become severely ill with the text “For Sanne’s future”
211
Reposted by Kirsty 🌻
sarah boothby @swastrosarah.bsky.social · 10/09/2025
#WhatILoveAboutMaeve'sLegacy She read Foucault before I did. I am 33 years older than her.
0223
Reposted by Kirsty 🌻
Dr. Heather Hinam 🍁 🇨🇦 @secondnaturemb.bsky.social · 13/09/2025
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.
1956553
Reposted by Kirsty 🌻
Jon Douglas @atranscendedman.bsky.social · 12/09/2025
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...
povertyalliance.org
23819
Kirsty 🌻 @kirstysmestory.bsky.social · 12/09/2025
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.
000
Kirsty 🌻 @kirstysmestory.bsky.social · 25/08/2025
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
100
Kirsty 🌻 @kirstysmestory.bsky.social · 04/08/2025
🤕 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.
100
Reposted by Kirsty 🌻
sarah boothby @swastrosarah.bsky.social · 31/07/2025
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
24216114
Kirsty 🌻 @kirstysmestory.bsky.social · 20/07/2025
To remember another M.E. community member and friend who’s life has ended too soon 😔🌹🦋
3103
Reposted by Kirsty 🌻
Adam @abrokenbattery.bsky.social · 30/06/2025
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.
1136
Kirsty 🌻 @kirstysmestory.bsky.social · 25/06/2025
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.
020
Kirsty 🌻 @kirstysmestory.bsky.social · 18/06/2025
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
241
Kirsty 🌻 @kirstysmestory.bsky.social · 14/06/2025
Does anyone have good or bad experiences with low dose Amitriptyline? They want to prescribe it for pain. #mecfs #longcovid
300
Kirsty 🌻 @kirstysmestory.bsky.social · 13/06/2025
How life is going:
010
Kirsty 🌻 @kirstysmestory.bsky.social · 11/06/2025
🤍
Picture of a poem:

You close your eyes,
The darkness blinds you,
You feel like you are safe,
Finding bliss in
ignorance.
Unaware of all the
deceives
lurking in the dark.
Open your eyes,
Face the truth—
The truth will break your
heart first
And then it will
set you free.
000
Kirsty 🌻 @kirstysmestory.bsky.social · 08/06/2025
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.
010
Reposted by Kirsty 🌻
Riemerville @riemerville.bsky.social · 05/06/2025
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
181
Kirsty 🌻 @kirstysmestory.bsky.social · 05/06/2025
Wish we could all confront a doctor who dismissed us, belittled us or wrongfully psychologised a physical health condition. Very satisfying. Also sad this episode is from 1989 yet here we are in 2025 🫠
040
Reposted by Kirsty 🌻
Didier @medidier.bsky.social · 01/06/2025
I hope (all) victims (past and current) of the #GreatestMEdicalScandal are going witness in their lifetime some reparation and contrition for this historical and unspeakable abuse.
031
Reposted by Kirsty 🌻
helephant @helephant.bsky.social · 26/05/2025
"Thoracic outlet syndrome joins other anatomical + disorders such as craniocervical instability, spinal stenosis, and cervical myopathy that can produce or exacerbate ME/CFS/FM symptoms that are not typically associated with them."
healthrising.org
Thoracic Outlet Syndrome (TOS) Commonly Found in ME/CFS and Chronic Fatigue - Health Rising
Thoracic outlet syndrome could be contributing to the symptoms in a considerable number of people with ME/CFS and similar diseases.
031
Reposted by Kirsty 🌻
Patients with Power @ptswithpower.com · 26/05/2025
Keep talking about #MedicalGaslighting, keep sharing your stories and speaking out - It might not feel like it, but we've made a lot of progress in the last 5 years. eg: ✨People who don't have chronic illness (but can support us) are becoming familiar with the term.✨ 🧵 #neisvoid #eds #pots #pwme
24120
Kirsty 🌻 @kirstysmestory.bsky.social · 25/05/2025
🧵1. Every day I’m losing more hair. I have bald spots, and a receding hairline. With any health issue most GP’s almost always refuses to refer me to a specialist, and they don’t do thorough bloodwork either.
190
Kirsty 🌻 @kirstysmestory.bsky.social · 25/05/2025
My experience so far. On twitter: “post viral illness is not real” “long covid is only the clot shot” “ME is just laziness” Bluesky: several people“anti-vax troll” Interesting experience not sure yet which side it more obnoxious 🤔
341
Reposted by Kirsty 🌻
sibylle dahrendorf @sibylledahrendorf.bsky.social · 24/05/2025
1/ "Eine Ärztin habe Tobias #Borreliose diagnostiziert und ihm versichert, dass die Therapie harmlos sei." Tja, denkste. Assistierter Suizid - Ja. Richtige Therapie - Nein! GRAUSAM! @dorobaer.bsky.social‬ ‪@bmg-bund.bsky.social‬ #MCAS #POTS #Mitochondrienschädigung #MEcfs www.rtl.de/news/tobias-...
rtl.de
Therapien werden Tobias (32) verwehrt, aber die Sterbehilfe bewilligt
ME/CFS-Patient startet einen letzten Versuch, sein Leben zu retten.
24928
Kirsty 🌻 @kirstysmestory.bsky.social · 24/05/2025
Im Kirsty and I’m 27 years old. I’ve had health issues most of my life but M.E. since the age of 11. My severity has fluctuated a lot over the years until everything got progressively worse in 2021 after my Pfizer vaccination and a covid infection 2023. I just want a better quality of life
Pictures of me before everything went to shit
7385
Kirsty 🌻 @kirstysmestory.bsky.social · 24/05/2025
I just made an account since twitter/X keeps having issues 😮‍💨 I don’t have a clue how Bluesky is different from X but will have to figure this out. I have the same username @kirstymecfslife
3101
Reposted by Kirsty 🌻
Ntisec @ntisec.bsky.social · 24/05/2025
Ik geloof steeds meer in een rol van afwijkingen in gladde spiercellen als onderdeel van de pathologie van #MEcvs / #longcovid Bloedvaten en lymfevaten zitten vol met gladde spierweefsels die zorgen voor transport energie, bouwstoffen, immuuncellen, afvalstoffen etc www.trouw.nl/wetenschap/s...
trouw.nl
Spieren van patiënten met long covid en ME/CVS zijn anders, maar dat komt niet door hun leefstijl
Dat mensen met long covid en ME/CVS na inspanning vaak vermoeid zijn, komt niet doordat ze minder vaak bewegen. Dat tonen Nederlandse onderzoekers aan.
2114