@tomkindlon @mecfs I am finding it increasingly difficult to want to stay. I know I donæ have #VerySevereME, but #SevereME for the past decade is draining my life-force… I am saving this as a boost to my psyche… 🙏🏻

@ehashman I have #SevereME. I mostly cannæ watch tv, listen to the radio, leave the house, garden, cook, bathe, read books or long journalistic or scientific articles, etc. etc. I have been on a permanently downwards trajectory since diagnosis 25 years ago this Autumn. Already mostly bedridden, I am heading towards #VerySevereME and I am dreading it… At best I lead a sub-life.

Sign this petition to help try to save Alice Barrett's life. She's 25 & has #VerySevereME.
She's currently in Royal Devon & Exeter NHS Foundation Trust hospital.
They are refusing to adapt their NG tube feeding policy for her requirements'
#MeCfs #CfsMe #Fibromyalgia
#PwME

https://www.change.org/p/save-alice-barrett-life?signed=true&s=09

@IrishMECFSAssociation @mecfs
A heartbreaking story excellently written
https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MEeps #SevereME #SevereMECFS​
#SevereCFS #VerySevereME​

4/4 #VerySevereME

“Very severe ME/CFS

People with very severe #MECFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.”

Link to #NICE website & #NG206
https://www.nice.org.uk/guidance/ng206/chapter/Recommendations

Life is all about problems and overcoming them. Matters will eventually be fully resolved. I #need to sort out and fight for what I need whilst I am still able to do so. Almost no-one recovers from “#VerySevereME” - but I have already begun to fall more frequently into said category. I shall have to move from my own home and ultimately into nursing-care; but hopefully I can reside in a small ground-floor flat prior to the latter. 🤞🏻

#pwME #MyalgicEncephalomyelitis #SevereME #SocialCareCrisis

RT @BathroomZombie
Bitte helft mir dabei einen Arzt zu finden der mich zu Hause medizinisch versorgt

#verysevereME #pallativ #hospiz #pflege #MedTwitter #Medbubble #medizin #endstadium

RT @BathroomZombie@twitter.com

Bitte helft mir dabei einen Arzt zu finden der mich zu Hause medizinisch versorgt

#verysevereME #pallativ #hospiz #pflege #MedTwitter #Medbubble #medizin #endstadium

🐦🔗: https://twitter.com/BathroomZombie/status/1605204552365506564

#PwME generally have one or more #Comorbidities: I personally have six of the ones listed at the bottom of the diagram (far too complex to write a summary thereof). I have #SevereME, a loss of the vast majority of pre-illness function. #MyalgicEncephalomyelitis kills those with #VerySevereME and I dread the ineluctable slide into said category…

RT @Arizona10238417
#MECFS #meawarenesshour #SevereME #VerySevereME
#Weihnachten #Adventskalender #twlz #TheLänd
Eltern werden immer alles für ihr Kind tun

Wir stehen hilflos, wohnortabhängig ohne medizinische Betreuung/Versorgung da

Möchten Sie Milena und Ihre Eltern unterstützen?

Vielen Dank

RT @Arizona10238417
#Kinderrechte

Wenn Kinder/Jugendliche zu schwer krank sind um gesehen zu werden

Wenn Ärzte/Kliniken/Uni sich Lustig über eine grausame Erkrankung machen

#SevereME #VerySevereME #MECFS #LongCovidKids

Sei nicht #Tim

Werde laut

Eine kämpfende Mama mit schwer krankem Kind

RT @mecaregiver@twitter.com

Für Schwerkranke, die an
#SevereME & #VerySevereME leiden,
reicht es nicht,
wenn mit Politikern über Anerkennung von #ME/cfs diskutiert wird,
sie benötigen eine Therapie, bevor es zu spät ist!

🆘Deshalb #MECFS #BC007 Studie🆘

Bitte RT & 🖊️

💙Danke💙

https://www.openpetition.de/petition/statistik/foerderung-fuer-long-covid-und-me-cfs-medikament-bc-007?fbclid=IwAR0WCYPh0hZKqEZb0b-xLz4AAxV8Dzu7I2dtMIVe25sJguqgkqN1Zxfc7gc

🐦🔗: https://twitter.com/mecaregiver/status/1450173635365330954