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."
#SevereMECFS
Telehealth as a Care Solution for Homebound People: Systematic Review and Meta-Analysis of Healthcare Utilization, Quality of Life, & Well-Being Outcomes
https://onlinelibrary.wiley.com/doi/full/10.1155/hsc/7224151
"telehealth emerges as a viable alternative to conventional care, significantly reducing healthcare utilization & enhancing both HRQOL and well-being for #homebound people"
#chronicillness #Spoonies #Spoonie #SevereME #SevereMECFS @mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC
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.”
Today is the day to remember those with severe and very severe ME (Myalgic Encephalomyelitis). You are not forgotten.
#SevereMECFS awareness Day
Mild, people can't tell you're sick and suffering - severe is just a terrifying existence 😭😭😭 you're missing from your life.
One week ago to August 8, #SEVEREMEDAY
I have a Pinterest board with 699 pins on #severeMECFS here https://ie.pinterest.com/tomkindlon/mecfs-severe-mecfs-mecfs-myalgic-encephalomyelitis/ that could be shared around. It mainly contains images but also links to videos & articles
You don't need to be on Pinterest
#SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Bitte geh' für uns zur Demo, denn wir sind selbst zu krank dafür.
Am kommenden Freitag, den 8.8.2025, ist #Aktionstag für die Betroffenen von besonders fies ausgeprägter myalgischer Enzephalomyelitis (#severeME).
15 Uhr in #Berlin, von der #Weltzeituhr am #Alexanderplatz zum Roten Rathaus
A Quiet Storm: An online art gallery showcasing the artwork of people living with severe ME/CFS
https://www.aquietstorm.me/about
Image is from the AMMES June 2025 e-newsletter
#SevereME #MEcfs #SevereMECFS @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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 a young UK woman with severe ME
https://www.youtube.com/watch?v=cPH3kKkEYAI
Day 18
#SevereME #SevereCFS #mecfs #severemecfs @severeme
@mecfs
11/
#May12 is #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Day
&
May is #MECFSawarenessmonth
Please help by reposting and/or liking this 12-minute documentary which features Whitney Dafoe & others
A Quiet Storm: An online art gallery showcasing the artwork of people living with severe ME/CFS
@severeme
#SevereME #SevereMECFS
#SevereCFS
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
12/
Some people with ME/CFS or long COVID are extremely unwell and bedbound. Maintaining connections can make an enormous difference but can also be difficult because they are limited in what they can do. (continued in image)
Bateman Horne Center:
We’re excited to share the Caregiving Resource Guide — a collection of practical tips from experts and caregivers who spoke at the Severe #MECFS Caregiving Webinar Series. Many suggestions can also empower those who don’t have a dedicated caregiver.
@severeme
#SevereME #SevereMECFS
#SevereCFS #VerySevereME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Bateman Horne Center
#SevereMECFS : Caregiving, part of a 4-part series co-sponsored with Solve ME is now on YouTube. Hear from the panel of #MECFS caregivers who share practical tips, invaluable insights and experiences that make the caregiving journey a little easier
#SevereME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
4/
“During the inquest into Maeve's death, the coroner Deborah Archer said it became clear to her that there were no specialist hospital or hospices, beds, wards or other health care provision in England for patients with severe ME”
2/
“Maeve Boothby-O'Neill's final days were harrowing. The 27-year-old was confined to bed all day, unable to chew food and no longer able to sit up - she was severely ill with myalgic encephalomyelitis, or ME, and as a consequence severely malnourished”
"The Dilemma of Caring and Doing Research for Severe ME/CFS Patients" by Christian Kull based on the experience of trying to get care for his son
Description from Science for ME @s4me weekly update
2/
ANZMES Releases Essential Resource for Healthcare Professionals to Manage Hospital Stays of Severe ME/CFS & #longCOVID Patients
If this is too hard to read, see link:
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PASC #SevereMECFS #VerySevereME @longcovid @mecfs #alt4ME
Today is #SevereME #SevereMECFS Awareness Day! I was starting to feel a bit better since two Nov 2023 neurosurgeries, but flares since have been humbling
Severe since 2017, hoping more neurosurgery care can let me reach Moderate again, please donate or boost https://www.gofundme.com/f/help-emily-get-medical-care
Danke an tagesschau und Prof. Uta Behrends für das sehr informative Interview zum #MECFS
Heute am 8.8. ist der weltweite #severeMECFS-Tag..
Tach-quak! Heute ist Donnerstag, der 8. August 2024. KW 32.
Today is Setting Orange, the 1st day of Bureaucracy in the YOLD 3190.
Am 8. August 2013 wurde zum ersten Mal der #SevereMECFS Awareness Day ausgerufen. Diese schwerste Form von ME/CFS bindet die Menschen 24/7 ans Bett. Es gibt immer noch keine Heilung, obwohl ME/CFS seit 1969 bekannt ist! – https://www.klamm.de/news/pressemitteilung-zum-severe-mecfs-awareness-day-am-08082024-19N995384.html
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