#myalgicencephalomyelitis — Public Fediverse posts

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed

https://www.theguardian.com/commentisfree/2026/sep/24/abandoned-dismissed-and-gaslighted-me-sufferers-betrayed

Screenshot from AMMES October 2026 newsletter

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

"The survey has identified multiple different ways that psychologists can potentially give that support and help people with ME/CFS"

Extract from British Psychological Society ME/CFS Guidelines (September 2026 Update)

https://meassociation.org.uk/wp-content/uploads/2026/09/BPS-ME-guidelines-September-2026-update.pdf

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

RE: https://mastodon.ie/@IrishMECFSAssociation/117406724926487533

Hope to see a few of you at this. 👋

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

Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon on Friday, October 23

Hopefully we’ll see some of you there
https://irishmecfs.org/blog/friday-october-23-dublin-informal-mecfs-social-meet-up-hosted-by-tom-kindlon-irish-mecfs-association

Carers/parents/similar welcome.

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

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

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

New from the US 🇺🇸

searchMECFS: An Online, Interactive Platform to Facilitate Secondary Use of Biospecimens and Associated Research Data From Myalgic Encephalomyelitis Studies

https://doi.org/10.3768/rtipress.2026.mr.0058.2609

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

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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

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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

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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

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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

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