#myalgicencephalomyelitis — Public Fediverse posts

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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

10/
What fatigue in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

@mecfs

9/
What fatigue in ME/CFS feels like

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

@mecfs

Norway 🇳🇴
Demonstration scheduled for 28th October

https://www.facebook.com/events/1808732906786623

https://www.me-foreldrene.no/markering-pa-eidsvolds-plass

Screenshot from latest Science for ME weekly update

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

8/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

@mecfs

7/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

@mecfs

8/
What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

@mecfs

6/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife
@mecfs

7/
What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

@mecfs

6/
What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

@mecfs

He is also on IG with the same username

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

5/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

@mecfs

4/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

@mecfs

5/
What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

@mecfs

Pharmacological Treatment Approaches in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

https://www.scifiniti.com/3105-3874/2/2026.0010

Screenshot from latest Science for ME weekly update

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

4/
What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

@mecfs

3/
What fatigue in ME/CFS feels like.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

@mecfs

3/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife

@mecfs

2/
Impact of fatigue in ME/CFS

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife
@mecfs

View from the Trenches of #MyalgicEncephalomyelitis latest news:
-US rule affects ability to import medications
-National Survey on Health and Disability
-Olmstead Act news
-MEGC Fall edition
-Monbiot publishes another article
-ThereForME charity

https://colleensteckelmeiccinfo.substack.com/p/news-2026-oct-5?utm_source=share&utm_medium=android&r=deavh

2/
What fatigue in ME/CFS feels like.

#mecfs #pwME #cfs #fatigue #chronicfatigue #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

🧵
Ultimately, fatigue in ME/CFS shrinks lives so severely that it often takes a devastating toll on mental health. This impact is unsurprising given the immense loss of careers, relationships, hobbies, and independence.

https://tinyurl.com/fatigueimpactME

#mecfs #pwME #cfs #fatigue #chronicfatigue #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

1/

I was one of a number of patient scientists and advocates who was interviewed for this sympathetic, open access paper

"Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis"

https://www.sciencedirect.com/science/article/pii/S003936812600110X?via%3Dihub

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

🧵
Fatigue is an unrelenting, deeply isolating symptom in ME/CFS. It cuts individuals off from family time, social activities, & hobbies, fundamentally fracturing their identity & how they view themselves. It leaves people grieving who they used to be.

https://tinyurl.com/fatigueimpactME

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

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