🌻Kirsty
@Kirstycfsmelife
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M.E. since 2009 | 2021 vax injured
Joined December 2021
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Pinned Tweet
We need a thread 🧵of very
#severeME
patients that (somewhat) improved and what worked for them.
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The subreddit page that was shared is really upsetting.
This is how a lot of doctors think and act.
It’s never just “we don’t know how to help you”
It’s mocking, psychologising and resenting you for asking for help when your life is falling apart.
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So many ME patients who have been sick for DECADES are only now trying LDN, beta blockers , b12 injections etc. along with Long covid patients.
They did not get access to it and all the time was spend convincing health care professionals that their approach was harming us.
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Severe ME is the living death.
Almost any kind of exertion causes suffering and could drastically worsen someone’s baseline for years!
Instead of getting help patients get abused, neglected and send to a psychiatric hospital.
#SaveKatiana
💙
#GreatestMEdicalScandal
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Appreciate the LC folks who mention and don’t forget about pre-Covid M.E. sufferers who’ve been dealing with this hell for many years or even decades! 🛌
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When I was more mild/moderate people didn’t understand and thought I was exaggerating and were very judgmental. Now that I’m housebound and mostly bed bound for years I’m forgotten. I think my mum is the only healthy person in my life that understands I’m really physically sick.
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Im still not the strongest person but as a teenager I remember crying on my way home every single time.
Then some psychiatrists have the audacity to say M.E. patients are “hostile” when the neglect and abuse from doctors has caused many patients to end their lives.
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Dianna is incredibly strong 🙏🏻 the hatred in the comments is more reason to keep sharing our reality. Won’t cant be silenced and forgotten again for many decades. We need to be heard, we need support and funding for research.
Dianna decided to shave her head to make it easier on herself for her journey with
#LongCovid
and
#MECFS
. Many people struggling with this disease choose to do this if bed-bound for extended periods of time, like Dianna has been.
Hopefully she can avoid crashes, and reduce the
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🖊Life with M.E.:
I cooked my own lunch for the first time in a while.
It took 15 min and then I ate it while being upright.
Afterwards I felt intense exhaustion, heart palpitations and I started shaking.
[1/4]
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I feel stuck , I do too much then I crash and feel suicidal. When I rest enough , and pace im in a terrible mental state because I have to isolate myself to do so.
Most of us are dealing with this but I cant deal with the emotional pain.
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@frogess33
You shared his face, medical information and tried to publicly shame him…
Also so much for sickness and in health. 👍🏻
Divorcing someone for not wearing a mask is a new one to me. 😷
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when I was a teen with
#MECFS
they didn't do anything to make school accessible for me. Nobody helped me and instead I had a court case at 15 for missing hours of school, since that's a crime. I think the system is not only ableist they stripped me of my human rights.
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@Iefsworld
11 years ago I was locked up in a room by mental health care workers for months as punishment for giving into my “sickness behaviour”. I only had a radio and 1 book.
Treated worse than adult prisoners.
#MECFS
@GeorgeMonbiot
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💙 a few things to say
(Sorry for my Dutch accent which gets stronger when I’m anxious)
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I recently found out what else CBT stands for 🤣 probably less harmful for M.E. patients
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Maybe most people know this but often people are still surprised that I’ve been having orthostatic intolerance since 2009 now and only now possibly able to try medications for it.
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Everyday for years I’m left to rot , forgotten and treated like a burden.
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Must be hard being conservative and sick with M.E. knowing most other conservatives or right wingers mock M.E./cfs and Long covid.
This post was disgusting but expected from Matt Walsh.
This woman posted a sarcastic meme as her last words before being euthanized by doctors because she has "chronic fatigue syndrome," which is a disease that doesn't actually exist. Our dystopian future has arrived and it is bleaker than anyone ever imagined.
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“Fatigue” for me is just walking around my house or sitting up for too long and then feeling I need to crawl back in bed to recover from it.
In bed I still have pins and needles sensations or numbness in my limbs for a while.
My body feels heavy and too exhausted to move.
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I fell asleep and slept for two hours.
When I woke up the symptoms were still going on but less intensely.
It doesn’t last all day for me but it happens several times a day.
However, I never feel ok.
[4/4]
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I hope my story can be heard one day even when I’m no longer here.
It’s my choice to use this platform as a diary.
There is no justice in this world but hope all mistreatment will be exposed one day.
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Its 2024 and even if I use M.E. doctors will write down “CFS” or worse “Chronic fatigue”.
15 years of this shit.
How can we finally get a better name for this extremely debilitating illness?
"The name of this illness is an atrocity. It degrades us as patients. It degrades us as human beings... Everything revolves around this name: research money, credibility, support from family, friends, neighbors, co-workers . . .”
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Would’ve been great if in the first 12/13 years of my illness I got support and could’ve tried different medications /treatments.
Instead it was a constant fight for someone to take me seriously and a decade of living in constant fear of being institutionalised.
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@FvRhijn
Thank you , I’m from the Netherlands and got sick at 11. They told me it was psychological and eventually institutionalised me at 15.
They tried to discipline and punish me out of my “sickness behaviour”
I still have PTSD from it.
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When you finally FINALLY feel somewhat ok and then you waste your energy on singing opera for your dog 🤦🏼♀️
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When your doctor’s appointment can’t be online and you have no choice but to go in person
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@JanetDafoe
As a kid they removed me out of my home because they thought I wasn’t able to function because of psychological reasons. They wrote in my treatment plan that I’m harming myself by thinking something was physically wrong with me. Im still traumatised.
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The shaking stopped but still felt like my body was buzzing.
Additionally, I felt paresthesia in my legs ,feet and hands. (Sensation of pins and needles and somewhat loss of feeling) [3/4]
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Do y’all keep giving yourself timelines for how long you’re still willing try to get better? If in one year time I haven’t even slightly improved I’m done.
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@naijatuale_ng
@NoContextHumans
Its me, im the bitter soul 😂 I’m done with people filming all the time in public. I relate to the girl on the background on a spiritual level lol.
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It really doesn't help that only current clinic specifically for Long covid (in its name) in the netherlands is run by a doctor who lost his medical license for s*xual relationships with his patients and abuse of power.
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I laid down but this continued and my head started to feel really hot but my body really cold--I had goosebumps all over and was covered in sweat.
I propped up a pillow under my head/neck because lying on my side made me dizzy.
[2/4]
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How much of a decrease in cerebral blood flow do most M.E. patients have?
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Some healthy people that hear about my situation are kind but I know they think CFS is a mental illness.
Fuck the people that decided to call this debilitating illness CFS.
Also all the doctors that still write down “suffers from chronic fatigue” in my records not even CFS.
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@JasonErvD
-Je eigen kleren
-dag crème
-boek
Niemand mocht laptop/mobiel op mijn group.
Als iemand dit leest.
Ik werd hier geplaatst omdat ik autisme zou hebben. Niet suïcidaal of niks crimineels gedaan.
Zou een tijdelijke plaatsing zijn.
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Katiana’s phone seems to be already taken away from her.
On her profile
@katiamek
you can see her last tweets.
It will help to quote tweet her tweets using a hashtag
#SaveKatiana
#GreatestMEdicalScandal
#DontLetMEDie
#LongCovid
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26 year old Katiana is, in her own words, “in agony and pain everyday…almost entirely bedbound”. She needs urgent expert intervention to save her life!
#SaveKatiana
#ExposeMENow
#LongCovidGreece
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Being ill at 15 I rather had no diagnosis than be diagnosed with Chronic fatigue syndrome. Like many I was told it was just “feeling a bit tired for 6+ months”
I was actually shamed for not getting better and recovering from it.
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I don't think anyone gets the horror of constant crashes/PEM , feeling incredibly ill and in pain and then having everyone against you. To be punished and threatened to elongate your stay when you PHYSCIALLY CANT DO THINGS.
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Twitter storm tomorrow 10:00 am CET to save Katiana.
TWEETSTORM scheduled for Sunday (tomorrow). Instructions are here. Please let’s band together and try to get the right eyes on this tomorrow. I will also be doing a similar version in Greek.
#SevereME
#LongCovid
#DontLetMEDie
#MEKills
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@useless_priest
Same with M.E. years ago.
Told its psychosomatic yet I couldn’t donate blood.
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Too many young women have died due to lack of medical care. Don’t let Katiana be next!
#SaveKatiana
#GreatestMEdicalScandal
#ExposeMENow
#LongCovid
@AdonisGeorgiadi
@YpYgGR
@mthemisto
I will not have a phone after this post. They told me there is a cure about me/cfs and this is antidepressants. They were like "you have no proof other than dysautonomia and that's only low bp"
Please share. I'm very severe.
#severeme
#longcovid
#longcovidgreece
#mecfs
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Any advice to keep your body in a calm state even when people mistreat you?
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@goslee_aaron
Broke me as a child that a psychiatrist/psychologist telling me how I think and who I am without knowing me.
Everything I say would be used against me and they justified emotional and physical abuse towards me.
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@Shrink_at_Large
This story made me cry. The pain a misdiagnosis can cause is not understood.
It feels like defamation of character and they try to break down your sense of self.
All this while not addressing the things you’re actually struggling with, adding insult to injury.
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Blows my mind that I was told my illness was psychosomatic and their solution was lock me up, neglect me and emotionally, physically abuse me.
I’m pretty sure that if it were psychological that wouldn’t help either now would it 🤡 Im convinced most people are just evil
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It’s been 15 years and my GP still likes to add “psychosomatic illness?“ when referring me somewhere.
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Cooling my head with ice pack , fan etc. and I immediately have less racing thoughts , less brain squeezing sensation and I feel calm.
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Also want to say my parents didnt place me there , my legal gardian who i met up with just a few times, who couldnt remember my name and facts about me did. It was not ignorance this was a truly sadistic individual.
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@thephysicsgirl
A lot of ''trolls'' in the comment section ofcourse mostly christian conservative men as expected. So much hatred from those who follow a supposedly loving god. They feel so great bullying disabled people online, hypocrites.'
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They broke me nobody cared. Nobody tried to get me out of there. Just 8 months of being treated less than human , room door locked, no contact with my friends, no education, did not get any therapy there, not allowed to sit outside more than 10 min a day.
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Miss my friend who ended his life some months ago 😔 This Illness taking the best people 💔
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constantly emotionally abused till i developed severe anxiety disorder and their solution to that was body slamming me to the ground bruising me and broken lip, throwing me in solitary confinement constantly. This was ''closed youth care'' in the netherlands
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When my health continues to deteriorate so does my mental well being.
I really enjoyed chatting with everyone in spaces❤️Appreciate the emotional support, advice and just chatting about whatever. Unfortunately I don’t think I am able to do so anymore for a while, I keep crashing
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Stuur jongeren met CVS/M.E. en Long covid niet naar het Nijmeegs Kenniscentrum Chronische Vermoeidheid (NKCV)
Natuurlijk wou mijn huisarts mij vroeger ook hier naartoe doorverwijzen 🙄 gelukkig ben ik nooit gegaan.
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@WomenReadWomen
A lot of people still think there are only a few ''bad guys'' out there , there are monsters in your own village that would do the same. Just sick..
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@PaulGadsden82
When i was sick with M.E. and they institutionalized me ,it really broke me. I never healed from that trauma.
I constantly feel I don't want to be here anymore but I also in some way feel that then they win? Why do evil people get to live while we end it?
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Do we have more M.E./CFS spaces?
I feel that people who had M.E. before long covid don’t find and connect with each other the same way.
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Imagine going to hospital & fearing for your life because doctors don’t believe in your physical illness. The situation could not be more dangerous for
@katiamek
- action needed NOW!
@ekathimerini
@greekcitytimes
#SaveKatiana
#SevereME
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@AaronCa11
Majority of healthy people never heard of M.E./CFS. Where are all these interviews on the news? lol
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So idk if this is just trending for me again but keep at it 💙
#SaveKatiana
#GreatestMEdicalScandal
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Without IV feed & fluid
#KarenGordon
will die like so many other women w/
#SevereME
already have.
#DontLetMEDie
#GreatestMEdicalScandal
Tweeting for 💙
#KarenGordon
#SevereME
being mistreated by her NHS Trust.
Bed-bound & cannot eat or drink.
#DontLetMEDie
#GreatestMEdicalScandal
#pwLC
#pwME
The Times will publish her story on Monday 14th Oct 💙
Sign ✍️ & learn more here -
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I'm glad they're finding out disabled people ,physical disability and learning disabilities were ALSO placed in these institutions.
#geslotenjeugdzorg
#HumanRights
#Disabilityrights
Na jaren van complete onverschilligheid binnen onze landsgrenzen, heb ik mijn tranen weggeslikt toen comitélid Fitoussi onze overheid wees op de mensonterende omstandigheden die de ZIKOS-afdelingen in de jeugdzorg hadden getroffen.
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First in my thread :)
Glad to hear Amy 💕🙏🏻
@Kirstycfsmelife
I'm in this category, I used to be very severe. Paleo diet, Cromolyn, and especially Ativan helped me.
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Medications that helped Martin (who used to be very severe) drastically improve 💊
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#SaveCarlasLife
#ExposeMENow
Don’t let another person suffer or die!
Doctors are supposed to save lives , this is just awful. 😟
Severe and very severe M.E. sufferers shouldn't have to fear going into hospital, they shouldn't have to fear not being believed... but this IS the reality.
#SaveCarlasLife
#ExposeMENow
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In the comments someone mentioned that Ketotifen helped them tolerate light and a few foods again. (It's a private account so I'm repeating what they shared. ) MCAS medications seemed to have helped many people.💙
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If my health improves there are so many great people here id love to meet up with 💙
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@DrEmmaNash
People with M.E./CFS and Long covid have a really low quality of life.
Doctors have caused a lot of harm by dismissing patients and psychologising our illness.
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Just know that Low Dose Abilify can also cause Akathisia.
It’s not as “rare” as they make it out to be.
I really wouldn’t risk it.
LDA caused me to have really bad insomnia for 5 months after stopping.
This is nothing compared to other people who are permanently harmed.
Stefan developed
#akathisia
in 2020. Since then, he has been repeatedly misdiagnosed, involuntarily hospitalized, and poly-drugged. This is Stefan today, three years later.
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@TheFP
@rupasubramanya
You broke her trust by misquoting her and twisting her story! Poor journalism
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Wait not everyone has music playing in their head?
Patient to doctor
‘I can hear music playing in my head that isn’t there’
(Musical hallucinations caused by neurological damage)
Doctor ‘we don’t know much about it,go to a nightclub until 1am. Not 4am.1am. See if that helps.’
Patient with light&noise sensitivity from long Covid
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Some men on this platform think they can talk in a disrespectful way to women and they just supposed to put up with it.
That’s not going to happen , you’ll get it right back.
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I’ve just created a telegram group for CCI/AAI , Tethered Cord etc.
Dm me or comment below if you’d like to join! 🙏🏻 Hope we can share our journey and help eachother out
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@Renmakesmusic
@alexandrite113
Id like to thank you Ren I was stuck in bed all day but your music gave me the strength to jump out of my window
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@ThePOTSPostman
Dizziness when standing up, loss of feelings in my limbs , extreme exhaustion from walking/cycling and feeling unwell raising my arm to ask a question,
Somehow people told me everyone has that??
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Somatic symptom disorder should be removed from the DSM 5. Thanks for all the lives it ruined👍🏻
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@BoomslangCreate
I don’t think they can afford any treatments or tried similar approaches with no luck. Maybe you could go more in depth about your theory and approach to improving peoples health on your profile so people can understand it better and then consider it. Advice was appreciated 🙏🏻
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@MrkStdngr
If you can’t pursue anything you’re passionate about, can’t travel, can’t do your previous hobbies, can’t tolerate socialising and can’t enjoy the little things in life anymore then yeah you CAN say this illness ruined your life!!! Not internalised ableism making you think that🙄
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Everyone around us has failed us.
pw Long covid and M.E. are left to suffer on their own. It’s abuse and neglect on such a large scale idk why this isn’t making headlines.
Pains me how many people are choosing to end their life.
My heart is broken 💔
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@alexandrite113
Brings back memories from when I was sick as a teen and they told my parents to just force me to sit at the dinner table when I was too exhausted to sit up and eat. Basically saying I was being “difficult” on purpose and that they shouldn’t enable my behaviour.
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@marganina
She’s clearly thinking about how people didn’t social distance or mask etc in the pandemic. This has absolutely nothing to do with HIV.
Your tweet is confusing…
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