Am 12. Mai ist der Internationale ME/CFS Tag. Dieser Tag soll auf die schwere Krankheit und die Situation der Betroffenen aufmerksam machen und Bewusstsein schaffen. Denn obwohl ME/CFS seit 1969 von der WHO als neurologische Erkrankung unter G93.3 klassifiziert ist, ist die Situation der Betroffenen äußerst schwierig: Es fehlt an Aufklärung, medizinischer Versorgung, sozialer Absicherung und […]
It's #BlueSunday2026! A day to fundraise for ME advocacy and the #MillionsMissing, and like every May, I will match your donations!
For 3+ years I have been of this world but not in it, and this is my best hope of getting my old life back. My post earlier in the thread talks about the realities of my day to day now.
Okay, that's all for today! If you made it all the way here, thanks so for reading! ❤️
Please share this information with others! Boost this thread, share links with friends & family, etc.
I'll end with a quote from Naomi Whittingham:
"No matter how isolated you might be, you are inextricably connected to the rest of humanity in ways you can’t fully imagine."
Source = https://alifehidden.com/2026/05/10/not-forgotten/
23/23
#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay
If you're a US resident you can add your story to #MEAction’s story bank.
They want stories from patients, caregivers, friends & family, healthcare providers, disability advocates - anyone who wants to contribute!
They particularly need stories from folks who rely on Medicaid.
You can remain anonymous if you like. Your story can include photos or video (optional)
Details:
https://airtable.com/app4hQ0Pkj285JqK1/pag3Ar4l6GfUGtxP1/form
18/n
OK, I'm gonna take a rest break!
I'm trying to avoid PEM (post-exertional malaise), aka PESE (post-exertional symptom exacerbation)
Pacing is hard! It often fails due to some unplanned exertion which can't be avoided. And sometimes adrenaline takes over when I should be resting.
In short, it's easy to do too much and crash. Fact sheet about PEM:
https://www.s4me.info/threads/science-for-me-fact-sheets.43310/#post-606969
I'll be back later today! 😁
9/n
#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay
RE: https://disabled.social/@ahimsa_pdx/116562629613058951
Another inpressive video by Anil.
What does #MillionsMissing mean?
Even mild cases of ME/CFS cause significant loss. So people with ME/CFS are "missing" from work, socializing, exercise, etc.
Moderate cases cause more loss so that people can rarely leave the house.
People with severe cases are in bed, rarely able to intereact with anyone.
As ME/CFS gets worse a person's life shrinks more and more.
The attached comic is by Kornelia Paulsen.
8/n
Ö. Ges. für ME/CFS
e. hashman 🇵🇸
Ahimsa
Leah McElrath
Frieke