Irish ME/CFS AssociationThanks very much to our member, Éabha Melvin, for doing this interview today on Nuacht TG4 to mark May 12.
This clip was posted on X. On tv, the newsreader also said a little about it by way of introduction.
Dr. Karin Kelle-HerfurthAnerkennung ist hier keine Frage offener Befunde. Schließlich schützt Beweisführung auch nicht vor Unsichtbarmachung. Und überhaupt: Warum sollte diskutiert werden, ob bei dieser Erkrankung das gelten darf, was bei anderen als selbstverständlich angesehen wird:…?
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#MECFS #ME #pwME #MEAwareness
Dr. Karin Kelle-HerfurthAnerkennung ist hier keine Frage offener Befunde. Schließlich schützt Beweisführung auch nicht vor Unsichtbarmachung. Und überhaupt: Warum sollte diskutiert werden, ob bei dieser Erkrankung das gelten darf, was bei anderen als selbstverständlich angesehen wird: medizinische Sorgfalt, soziale Absicherung, Schutz vor Verschlechterung und Zuständigkeit?
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Emily JohnsonToday is #MEAwarenessDay!
The Swedish study finding 1 in 4 people with hypermobile Ehlers Danlos Syndrome #hEDS or hypermobility spectrum disorder #HSD (which the EDS Society found are the same) have myalgic encephalomyelitis/chronic fatigue syndrome #MECFS #pwME: https://pmc.ncbi.nlm.nih.gov/articles/PMC7485557/
AhimsaSymptom severity ranges from mild to very severe. But even so-called "mild" ME/CFS has an enormous impact what a person can do.
With severe ME/CFS the person is mostly housebound or completely bedbound.
Anil van der Zee, a former professional dancer who now has severe ME, made this video:
https://www.youtube.com/watch?v=XhrAhGkrGuQ
Read the YouTube summary for more details
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#MEcfs #PwME #SevereME #MEAwarenessDay #WorldMEDay #MyalgicEncephalomyelitis
Buried Alive with M.E. (with subtitles)
RE: https://mastodon.ie/@IrishMECFSAssociation/116557378759480728
Éabha was filmed today so looking good it goes out tonight on Nuacht TG4 (19:00-19:30).
#MEcfs #PwME @mecfs
Tom KindlonI had a stressful dream last night, maybe appropriate for May 12! In the dream, I have a new or stand-in GP [family physician] and I am trying to persuade them to sign a disability form. They are smirking away, not very sympathetic. So I have to list my symptoms and losses over the years.
Mr ChimpToday is World #MEAwarenessDay
I wrote a short story earlier this year as an attempt to get across how devastating the disease can be: https://mentalplayground.co.uk/posts/the-mansion/
If you would like to know more about ME/CFS (and today is a good day to do that) then this is a good place to start: https://knowmecfs.org/
If that looks overwhelming, imagine what having it is like!
#mecfs #pwme #mecfsawareness #disabilities #myalgicEncephalomyelitis
doneknittingfor #MEcfs Awareness day ME Centraal asked for one picture that illustrates your life with ME.
Here's mine, it's a vertical picture, you may need to expand.
more information in the alt-text.
@MEcfs #myalgicEncephamyelitis #pwME
Here's mine, it's a vertical picture, you may need to expand.
more information in the alt-text.
@MEcfs #myalgicEncephamyelitis #pwME
David Davies-PayneWatchME for iPhone and Apple Watch
v2.10 now available
To help #pwME with daily pacing for #MECFS
iOS 17 | watchOS 10
Free. No data collected.
https://apps.apple.com/app/watchme/id1583153009
New in this version
- Improved widget updating on phone
- Improved complication updating on watch
- Added notifications on phone
- Added HRV graph
- Multiple interface improvements
- Performance improvements and bug fixes
- Added Trends screen (beta, enable via the Filter menu)
