Irish ME/CFS Association · @IrishMECFSAssociation
178 followers · 1554 posts · Server mastodon.ie
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
Irish ME/CFS Association · @IrishMECFSAssociation
178 followers · 1549 posts · Server mastodon.ie“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
Irish ME/CFS Association · @IrishMECFSAssociation
178 followers · 1548 posts · Server mastodon.ie“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
Irish ME/CFS Association · @IrishMECFSAssociation
178 followers · 1548 posts · Server mastodon.ie
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
leixsa · @leixsa
292 followers · 406 posts · Server medibubble.orgFür 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
Irish ME/CFS Association · @IrishMECFSAssociation
175 followers · 1448 posts · Server mastodon.ie
"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
Irish ME/CFS Association · @IrishMECFSAssociation
155 followers · 1187 posts · Server mastodon.ie
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
Irish ME/CFS Association · @IrishMECFSAssociation
155 followers · 1187 posts · Server mastodon.ie
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
Irish ME/CFS Association · @IrishMECFSAssociation
145 followers · 1019 posts · Server mastodon.ie27/
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
Irish ME/CFS Association · @IrishMECFSAssociation
144 followers · 984 posts · Server mastodon.ie18/
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
Cyrus · @CyruxiME
314 followers · 716 posts · Server toot.aquilenet.frThere’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
Cyrus · @CyruxiME
314 followers · 715 posts · Server toot.aquilenet.frLuxury 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
Cyrus · @CyruxiME
313 followers · 701 posts · Server toot.aquilenet.frIt’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
Irish ME/CFS Association · @IrishMECFSAssociation
121 followers · 703 posts · Server mastodon.ie
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
Irish ME/CFS Association · @IrishMECFSAssociation
121 followers · 567 posts · Server mastodon.ie
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
Irish ME/CFS Association · @IrishMECFSAssociation
120 followers · 542 posts · Server mastodon.ieME 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
Anil van der Zee · @anilvanderzee
74 followers · 11 posts · Server mastodon.social
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
Michael Stingl · @neurostingl
1935 followers · 95 posts · Server mastodon.social
Cyrus · @CyruxiME
304 followers · 646 posts · Server toot.aquilenet.fr
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
Domando Al Lobo · @DomandoAlLobo
62 followers · 637 posts · Server mastodon.social
#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