#myalgicencephalomyelitis — Public Fediverse posts

6/
Some people with ME/CFS complain they can feel groggy in the morning. But maybe rather than fight, it could be welcomed as an opportunity to get good rest?

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

@mecfs

If you're looking for more information after watching this short video here are 3 links:

* "Introduction to ME/CFS"
(fact sheet from the Science for ME forum)

https://s4me.info/threads/fact-sheet-1-introduction-to-me-cfs.51744/#post-596527

* "What is M.E.?"
(information from #MEAction, a patient advocacy group)

https://www.meaction.net/what-is-me

* "COVID-19 Triggers ME/CFS"
(blog post by the Bateman Horne Center)

https://batemanhornecenter.org/covid-19-triggers-me-cfs/

#MEcfs #LongCovid #PwME #MyalgicEncephalomyelitis

5/
Somebody elsewhere asked about what "feet up" means in this case:

So I am lying on a couch with my feet on top of cushions which are on
top of the elevated end of a couch

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

4/
Legend: The lower the bars are at any time, the less stress your body is under. So orange represents a more stressful period than blue. This is from a Garmin smartwatch.

#ME #MyalgicE #MyalgicEncephalomyelitis @mecfs

2/
I think of it as a continuation of my sleep even though I spend some of the time mentally active, reading and on social media, alternating with some time listening to music.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

🧵
I’ve discovered that if I lie down & put my feet up soon after I get up (see red in image), it recharges my body battery well, often at a better rate than when I was sleeping! If I do the same thing, later in the day (see green in image), I often see no increase in my body battery & often some decrease. Have noticed this pattern for last month.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

1/

A list we run for members of the Irish ME/CFS Association we thought we would plug.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs #mastodaoine

New CDC study 🇺🇸

Characterizing Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
Symptom Burden, Functional Impairment, and Comparison With Adults

https://www.jpeds.com/article/S0022-3476(26)00389-6/fulltext

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

3/
An extract that quotes me from "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis"

#MEcfs #PwME #epatient #epatients #MyalgicEncephalomyelitis

@mecfs