🧵
Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia)
Would be great if hospital staff took these recommendations on board.
#MEcfs @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#SevereME #VerySevereME #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
1/
(UK)
#ThereForME co-founder Karen Hargrave writes about applying for Continuing Healthcare funding
https://www.thereforme.uk/p/why-is-continuing-healthcare-funding
Screenshot from latest Science for ME weekly update
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@tomkindlon
Stonebird books on severe ME and caring now available to download for free
#MyalgicEncephalomyelitis #SevereME #SevereMECFS
#SevereCFS #VerySevereME #PwME
Stonebird books on severe ME and caring now available to download for free
Screenshot from Stonebird Facebook page (of Greg & Linda Crowhurst)
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
#SevereME #SevereMECFS
#SevereCFS #VerySevereME #PwME
4/
"The human body and mind were not designed to be encased in darkness, yet, for so many of us, this is our enforced mode of existence."
2/
“These results indicate that it may be beneficial for severely and very severely affected ME/CFS patients to be cared for in an environment where they are met with respect, understanding with the aim to reduce PEM as much as possible.”
Care instructions for how to take care of people with severe ME.
Google translation:
https://drive.google.com/file/d/1phdngalXgINYG-4eiySeyE1VumaZg7aN/view
Screenshot from latest Science for ME weekly update
#SevereME #MEcfs #CFS #PwME #VerySevereME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#StimmenAusDemDunkel #SevereMEAwarenessDay #MECFS #MEAwareness #pwsevereME #pwverysevereME #Erfahrungsbericht #severeME #verysevereME #Awareness #ChronicIllness #Zitate #Quotes #Fatigatio
6/6
Very sad to report that longtime mutual journalist and author @bridget_oshea of ME/CFS Evolving Awareness on Substack and a longtime Twitter mutual passed away July 16 after a heart attack following a years-long struggle suffering from #MECFS.
I’ve lost so many friends and acquaintances to #SevereME and #VerySevereME, especially during the last 8 years when I became Severe.
Will remember you always, Bridget. 💙🕯️
https://www.dignitymemorial.com/obituaries/chicago-il/bridget-oshea-12458050
Rutsche wohl endgültig in very severe ab. Habe gestern nach über drei Wochen zum ersten Mal geduscht. Bin heute komplett gecrasht. Kann kaum sprechen. Der ganze Körper ist bleischwer. Muss im Liegen essen.
Ich hab solche Angst.
#MEcfs #severeME #verysevereME
Tom Kindlon
BenNevis
Fatigatio e.V.
Emily Johnson
Christina Koch