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For those who are making the switch over to Mastodon, you can find me at @CyruxiME@toot.aquilenet.fr (warning: handles seem to be case-sensitive).
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Cyrus | Mastodon in bio retweeted
“It is hard to express the frightening sense of vulnerability engendered by being severely ill, and yet having genuine reason to fear the very system that is supposedly there to help.”
My reflections on #MaeveInquest (1/4)
alifehidden.com/2024/08/06/m…
It’s not tea but I have a prettier cup than last year.
This one goes in particular to very severe #MECFS patients who are being mistreated and/or are malnourished.
(Hope it brings me a little luck for my surgery for gastroparesis on Tuesday?)
#BlueSunday2024 #TeaPartyforME2024
Cyrus | Mastodon in bio retweeted
OK so we have a critical update on #SaveCarlasLife #ExposeMENow. We are watching the NHS kill a very severe ME patient in real time and we have literally been trying every possible route out of this 👇
Cyrus | Mastodon in bio retweeted
Dr @SabineHermisson speaks about the experience of severe ME patients.
HIDDEN - MISSING - FORGOTTEN
Living in isolation, not able to go to hospital, experiencing severe pain, too weak to eat and drink, gastroparesis that cause malnutrition and dehydration.
#UniteToFight2024
Cyrus | Mastodon in bio retweeted
Mila.
Meine Worte fehlen.
Deine sollen gehört werden.
#LearnAboutME
#UniteToFight2024
If only there were no more #MEAwarenessDay.
Thanks to all of the advocates for #MECFS, especially #pwME, who are trying to get us out of yet another Groundhog Year of very ill patients being left to rot, mistreated when reaching out for vital needs and dying because of it.
(To be clear, I mean that I wish there were no need for a #MEAwarenessDay #WorldMEDay.)
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Cyrus | Mastodon in bio retweeted
Save Millie's life!
Another very severely ill #pwME is being mistreated & we share another call for help. Please sign & share this petition as widely as you can.
chng.it/PPKvy6j2 via @UKChange
#MyalgicEncephalomyelitis #VerySevereME
Cyrus | Mastodon in bio retweeted
I luckily shared the last couple of weeks of #BethMazur's life with her. I want you to know: She felt loved when she died. She died because her ME was unbearable. There's nothing more any of us could have done. Effective treatment is the only thing that could have saved her.
ALT John Kadlecek, Beth Mazur and Julie Rehmeyer, smiling for a selfie.
Rest in peace #BethMazur. From the bottom of my heart, thank you for all you did.
I can’t keep up with how many lives #MECFS has claimed this year. It goes beyond sorrow — at this point, it’s anger that we’re left to die.
Like @jspotila says: enough. We need a cure. Now.
It is with deep sadness that we share with you that we lost one of our heroes and champions of ME yesterday. Beth Mazur passed away after battling ME for 15 years. She was a selfless beacon of hope & light in our community. She demonstrated an unwavering commitment to the cause.
ALT Photo of Beth Mazur smiling a beautiful big smile.
Cyrus | Mastodon in bio retweeted
The only words I have tonight are that I want this disease to stop killing any of us.
occupyme.net/2023/12/22/enou…