Update about Millie - 20.05.24

Millie has a second official ME diagnosis!

Petition
change.org/p/save-millie-…

#MillieSevereME #SevereME #pwME #saveMillie #BringMillieHome #DontLetMEDie #ExposeMENow

#SaveCarlasLife  
#ExposeMEnow #DontletMEdie #MEcfs #MyalgicE #MyalgicE ncephalomyelitis #pwme #severeME #verysevereME #MedicalScandal #MedicalCorruption #MedicalNeglect #MedicalAbuse #DisabilityDenial #Gaslighting #ScienceNotStigma #PsychAbuse #PsychologisingIllness

Update about Millie - 18.05.24

Petition
change.org/p/save-millie-…

#MillieSevereME #SevereME #pwME #saveMillie #BringMillieHome #DontLetMEDie #ExposeMENow

#BringMillieHome
#DontLetMEDie

Very #SevereME
#MyalgicEncephalomyelitis

#severeME
#MECFSawarenessday
#Bedbound

This is my 1st year of #MECFS vs now, nearly 3 years later with very severe ME. It doesn't matter how healthy you were, once you get #severeME your life as you know it is over. I'm bedridden and unable to speak at 25. WE NEED TREATMENTS NOW #WorldMEDay #MEAwarenessDay

'Moreover, current cases of the NHS neglecting people living with very severe ME are being exacerbated due to the NHS trusts claiming they are following BACME guidance – not NICE guidelines.'

#SevereME #MEcfs #PwME

Millie and family are so grateful for all the love, support snd solidarity the ME community has shown them. Things are slowly happening behind the scenes and I will have an update soon.

#MillieSevereME #SevereME #pwME #saveMillie #BringMillieHome #DontLetMEDie #ExposeMENow

Heartbreaking and infuriating 🥹 What does it take to get hospitals to do what sufferers with #severeME need?!

#BringMillieHome #exposeMENow #MillionsMissing

#SevereME #VerySevereME #BringMillieHome #DontLetMEDie

„Mit der Psyche hat diese Krankheit, für die es bislang keine Heilung gibt, nichts zu tun. Nur insofern, ob die Psyche stark genug ist, sie zu ertragen.“
Anschaulicher Artikel aus 2020 über #MECFS #severeME einer Freundin von Marion Kaufmann, Tagesspiegel
tagesspiegel.de/gesellschaft/w…

For my dear friends Els, Sophie, Retha, Céline & Ingeborg (and many more) who all died of ME in recent years 💙. Still miss you every day! 😪

#MEAwarenessDay #WorldMEDay #ExposeMENow #VerySevereME #SevereME #MyalgicEncephalomyelitis #MillionsMissing #pwME

Someone please help me!

Situation is dire & I need somewhere safe to live. #DV

Don’t know how many times or ways I can ask, or what I’m supposed to do.😔

#TeaPartyforME2024
#BlueRose soon #SevereME #MECFS #MillionsMissing #BlueSunday2024

My story: thecanary.co/global/world-a…

I always wanted to go and see the Northern Lights. But with 20 years of #MECFS including the last 5 1/2 #SevereME , it never happened. It's rather lovely that this #MEAwarenessMonth they've come to see me. Pictures aren't great as hands are shaky.

This is my view everyday as someone bedridden with #SevereME . I've lost over 3 years to this illness and am progressively getting worse. There are no treatments for #MECFS and we urgently need biomedical research and clinical trials. This illness is a living death #WorldMEDay

Does anyone know a Greek doctor who's informed about #severeME who could help Katiana make her father understand what care she needs?

#MillionsMissing #mecfs

My asthma isn't the long term condition that is keeping me from working, studying, travelling, becoming a parent, leaving the house, often leaving bed. I appreciate the offer Cambridge University Hospitals NHS NHS Cambridgeshire but I'd rather you fund better services for people with #MECFS , especially #SevereME

Today is #WorldMEDay . My partner Soph continues to get worse and I have written a small piece to try to describe - in a tiny way - what it is like a the moment. She has also allowed me to share one of the most recent photos of her. #pwme #MECFS #severeME #MEAwarenessDay

This might be a helpful idea for some of us chronically ill folk inc #pwME who live alone.

I know when the paramedics took me in with sepsis, it was a nightmare trying to WhatsApp someone with a list of things I needed when I was that unwell on top of the usual #SevereME etc.