ME/CFS article from Emerge Australia
Effective Communication Strategies For Carers
https://emerge.org.au/effective-communication-strategies-for-carers
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #SevereME @mecfs
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #severeme
“I cling to one thing, hope. Hope for a cure, if not for me, for all of my brothers and sisters who suffer with ME, hope that one day the medical profession will make us a priority, and offer understanding, diagnosis, treatment of our multiple symptoms and ultimately the cure.”
https://meassociation.org.uk/2023/08/severe-me-week-2023-sylvias-story/
@severeme @mecfs #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #MyE #severeme
#severemeweek #mecfs #cfs #myalgice #myalgicencephalomyelitis #ChronicFatigueSyndrome #pwme #mye #severeme
“It’s heart-breaking when the people we trust don't trust us, that we are doing our best and know what we are saying. Don't believe in us. Relationships are ripped apart by this. And they have a lasting effect on us, what we perceive as our self-worth and new relationships. And it happens a lot.”
“I'm Katie, I’m 18 and living with #VerySevereME. I live my life in one room, always in my bed.“
@mecfs #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #severeme #PwME
#verysevereme #mecfs #cfs #myalgice #myalgicencephalomyelitis #severeme #pwme
New
“I have had #severeME for 26 years”
“The frustrating thing about sometimes having 30% capacity is that I can do so much more from well-rested but it is an illusion, which masks my true capacities. They are always much lower than I think”
https://meassociation.org.uk/2023/08/severe-me-week-2023-mikes-story/
@severeme @mecfs #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME #MyE #ME #millionsmissing #CFSME
#severeme #mecfs #cfs #myalgice #myalgicencephalomyelitis #ChronicFatigueSyndrome #pwme #mye #me #millionsmissing #cfsme
Für alle, die es nicht wissen. Heute ist #severeME Day. Ca 25% der #MECFS Betroffenen sind an Haus und/oder Bett gebunden und können keine medizinische Versorgung in Anspruch nehmen. Sie werden #liegengelassen.
#severeme #mecfs #liegengelassen
"Caring for people with ME/CFS who are bedbound" (2023)
8-page fact sheet from
@EmergeAus
https://emerge.org.au/wp-content/uploads/2023/04/caringforpeoplewithmecfswhoarebedbound.pdf
#SevereME #SevereMECFS #SevereCFS #VerySevereME #MEcfs #CFS @mecfs @severeme
#severeme #severemecfs #severecfs #verysevereme #mecfs #cfs
German TV clip with subtitles (4 mins) The family of Jonas talk about the appalling treatment of Jonas who has very severe M.E.
@mecfs_de @mecfs #MyalgicEncephalomyelitis #mecfs #cfs #cfsme #pwme #pwmes #ChronicFatigueSyndrome @severeme #severeme #veryseveremr
#myalgicencephalomyelitis #mecfs #cfs #cfsme #pwme #pwmes #ChronicFatigueSyndrome #severeme #veryseveremr
Saturday, July 15 caregiver support call (for caregivers of people with me (mylagic encephalomeylitis), long covid and associated conditions)
https://www.meaction.net/event/me-caregiver-support-call/2023-07-15/
3:30 PM EDT/8:30 PM in Great Britain & Ireland
Find the time in your time zone here:
https://www.meaction.net/event/me-caregiver-support-call/2023-07-15/
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #longhaulers #LongCovid #Covidlonghaulers #PwLC #PostCovidSyndrome #postcovid #postcovid19 @mecfs @longcovid #SevereME #SevereMECFS
#SevereCFS
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #LongHaulers #LongCovid #covidlonghaulers #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #severeme #severemecfs #severecfs
27/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.
You can help by retooting this 15-minute video on
#SevereME & #VerySevereME: "Severe & Very Severe ME / CFS #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome"
Includes comments from professionals (incl. Drs
Muirhead/Weir/Speight/Shepherd/Nacul), patients & carers (incl. Association chair)
Discusses various distressing topics
http://www.dialogues-mecfs.co.uk/films/severeme/
#MedEd #Day27 #mecfs #cfs
#severeme #verysevereme #myalgicencephalomyelitis #ChronicFatigueSyndrome #meded #Day27 #mecfs #cfs
18/
May is #MyalgicEncephalomyelitis (ME) Awareness Month.
You can help to raise awareness and understanding by retweeting and/or
liking this 7 minute 8 second-video made on young UK woman with severe
ME
Day 18
#SevereME #SevereCFS
www.youtube.com/watch?v=cPH3kKkEYAI&feature=youtu.be
#myalgicencephalomyelitis #severeme #severecfs
There’s been construction work inside and outside my building since last week. I’m doing very poorly as it is and I’m honestly concerned at how much worse it’s making my #MECFS. I’m wired to the galls, in pain and my insomnia has ramped up a lot.
#pwME #SevereME #MyalgicEncephalomyelitis #LongCovid #NEISvoid #ChronicIllness #disability
#disability #chronicillness #NEISvoid #LongCovid #MyalgicEncephalomyelitis #severeme #pwme #mecfs
Luxury when you have very severe #MECFS is “cleaning” your greasy, itchy hair that hasn’t been washed in weeks with a water mist spray bottle and wet wipes.
Then you go back to lying in bed with your eyes closed all day (and night) long.
#SevereME #MyalgicEncephalomyelitis #LongCovid #NEISvoid #ChronicIllness #disability
#disability #chronicillness #NEISvoid #LongCovid #MyalgicEncephalomyelitis #severeme #mecfs
It’s also vicious because refeeding via the nasojejunal tube has kickstarted my metabolism, so I feel hungry and want to eat lots.
Honestly, I would be satisfied with eating what used to be my staple meals just half a year ago, before my #gastroparesis came on. Granted, I’m craving lots of tasty foods, but I enjoyed these meals and I would settle for just that if I could.
F*ck #MECFS, particularly #SevereME, f*ck #dysautonomia and f*ck #ChronicIllness. That’s all from me.
2/2
#chronicillness #Dysautonomia #severeme #mecfs #gastroparesis
Saturday, April 15 ME CAREGIVER SUPPORT CALL
https://www.meaction.net/event/me-caregiver-support-call/2023-04-15/
3:30 PM EDT (US)/8:30 PM in Great Britain & Ireland
Find the time in your time zone here:
https://www.meaction.net/event/me-caregiver-support-call/2023-04-15/
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MEeps #SevereME #SevereMECFS
#SevereCFS #VerySevereME @severeme @mecfs @cfs
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #meeps #severeme #severemecfs #severecfs #verysevereme
From David Tuller
“To access my right to this welfare payment,” she wrote, “I am required to prove my life has been devastated, presenting it as a collection of medico-historical facts about all the things I can’t do, which reminds me of all the things I might have wanted to do and makes my existence sound abject and pitiful.”
https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #SevereME #SevereMECFS
#SevereCFS #VerySevereME @severeme
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #severeme #severemecfs #severecfs #verysevereme
ME Association:
Severe ME Week (August 2022): “I was locked inside a shell that was too weak to protect me but too strong to escape…” - TW: Upsetting Content.
Kathryn describes the impact severe ME/CFS has had on her life.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MEeps #SevereME #VerySevereME #SevereMEWeek2022 @mecfs @severeme
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #myalgice #pwme #meeps #severeme #verysevereme #severemeweek2022
I'm a strong believer of the ripple effect.
That no matter how ill you are and how small your actions therefore may seem.
Your voice matters and together we are making a difference.
So please keep being your kind of loud.
A short video with some hands, music and despite this freaking illness still loads of love for life.
#pwme #art2cureme #severeme #millionsmissing
What severe #MECFS can do to you
Left: 61 kg / 135 lb in early August 2022, before my digestive issues began (when I had a crash in September)
Right: 48 kg / 106 lb (BMI 15.0) as of today, after 5 1/2 months of #gastroparesis
#MyalgicEncephalomyelitis #SevereME #LongCovid #NEISvoid #ChronicIllness #disability
#disability #chronicillness #NEISvoid #LongCovid #severeme #MyalgicEncephalomyelitis #gastroparesis #mecfs
#MEawarenessHour tengo mis brotes de calendario. Lo que significa que desde hace más de una década me organizo sabiendo cuáles son mis peores meses. Lo malo es que cada vez se han alargando más y ya es difícil distinguir cuál es la época "buena" con una #EncefalomielitisMialgica severa.
#155 Mi cuesta de enero dura unos meses 🐺 https://domandoallobo.blogspot.com/2016/02/155-mi-cuesta-de-enero-dura-unos-meses.html #SevereME #MEcfs #EMsfc #discapacidad #dependencia
#meawarenesshour #encefalomielitismialgica #severeme #mecfs #emsfc #discapacidad #dependencia