#me-cfs — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #me-cfs, aggregated by home.social.
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Using aids and maybe looking/acting different than others expect:
'I don't really care anymore what people think of me.'
'Well, better look silly than feel terrible.'
'I quite enjoy being weird. (..) I hope that everyone can just go out there and be their own weird self after this conversation.'
#physicaltherapy tools to reduce crashes and improve quality of life for:
#POTS
#PEM
#EDS
#MCAS
#MECFS
#LongCovid
#servicedog
#invisibleillness -
Using aids and maybe looking/acting different than others expect:
'I don't really care anymore what people think of me.'
'Well, better look silly than feel terrible.'
'I quite enjoy being weird. (..) I hope that everyone can just go out there and be their own weird self after this conversation.'
#physicaltherapy tools to reduce crashes and improve quality of life for:
#POTS
#PEM
#EDS
#MCAS
#MECFS
#LongCovid
#servicedog
#invisibleillness -
I can’t believe I used to have energy to shower everyday. Now it’s like once or twice a week. Even that gets exhausting.
#mecfs #pots #chronicillness -
I can’t believe I used to have energy to shower everyday. Now it’s like once or twice a week. Even that gets exhausting.
#mecfs #pots #chronicillness -
Solve ME/CFS Initiative:
ME/CFS-Associated Changes in Gut Microbes and Gut Metabolites and Their Relation to Neurocognitive Symptoms
August 6, 2026 -
Solve ME/CFS Initiative:
ME/CFS-Associated Changes in Gut Microbes and Gut Metabolites and Their Relation to Neurocognitive Symptoms
August 6, 2026 -
Solve-Funded Study Distinguishes Effects of Long Covid and ME/CFS From Effects of Deconditioning
August 6, 2026 -
Solve-Funded Study Distinguishes Effects of Long Covid and ME/CFS From Effects of Deconditioning
August 6, 2026 -
Duschen oder Garten gießen? Tägliche Entscheidungen, über die jemand ohne #mecfs wahrscheinlich nur lachen kann.
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(Ireland)
The HSE invite you to join a Lived Experience Group Meeting in September to share experiences.These meetings are online.
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(Ireland)
The HSE invite you to join a Lived Experience Group Meeting in September to share experiences.These meetings are online.
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“The more ill you become, the less care you receive” - Severe ME Inquiry Report
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“The more ill you become, the less care you receive” - Severe ME Inquiry Report
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Metabolische Umprogrammierung menschlicher Zellen durch das SARS-CoV-2-Protein ORF7a: Direkter Mechanismus für mitochondriale Dysfunktion
Diese neue Studie liefert einen der bislang klarsten molekularen Mechanismen für SARS‑CoV‑2‑assoziierte mitochondriale Dysfunktion. ⬇️ 😳 Heftig.
https://skywriter.blue/@ralfwittenbrink.bsky.social/3msraghy3ns2k
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Besserung bei #MECFS? Geschenk-Link.
Schon deshalb ein wohltuender Artikel, weil die Krankheit ernst genommen wird. Ob das medizinisch alles Sinn ergibt, kann ich nicht beurteilen.
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Check out the latest News in Brief (August 3 - 9) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-august-2026.51739/#post-712533
Public forum posts can be read by anyone, but if you'd like to contribute to the discussion then you'll need to become a forum member (it's free) 😁
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Check out the latest News in Brief (August 3 - 9) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-august-2026.51739/#post-712533
Public forum posts can be read by anyone, but if you'd like to contribute to the discussion then you'll need to become a forum member (it's free) 😁
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“This exhaustion is cellular”: Excerpts from the new book ‘What Is Myalgic Encephalomyelitis Like?’ @thesicktimes
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“This exhaustion is cellular”: Excerpts from the new book ‘What Is Myalgic Encephalomyelitis Like?’ @thesicktimes
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CW: PEM
Disclaimer, I'm not an expert, only a reasonably well-informed person.
You don't say what the existing level of support for her so I don't know if all this is in place anyway, but my first thought would be to balance stillness and nourishment.
• Darkened room &/or eye coverings.
• If possible no noise, inc keeping any verbal questions or comments to the minimum necessary & quietly spoken.
• Encourage her to sleep if possible.
• If she's hungry/thirsty, sips of lukewarm smoothie or lukewarm soup (lukewarm meaning close to 37°C, human body temperature, so it's not creating a demand on the body to warm it up or cool it down).
• Consider possibilities of spoon feeding or using a straw, so she has to move as little as possible to eat/drink & doesn't have to sit up.It's not clear to me whether she now has symptoms which might _not_ be PEM. That's tricky, because you don't want to miss something that wants treating in a different way. Any reason to think that, or is it all consistent with worse than usual PEM?
Also how much influence do you have over this? For example are you with her yourself or only able to advise? Would other people be likely to sabotage the low noise & low light due to not thinking it's important?
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CW: PEM
Disclaimer, I'm not an expert, only a reasonably well-informed person.
You don't say what the existing level of support for her so I don't know if all this is in place anyway, but my first thought would be to balance stillness and nourishment.
• Darkened room &/or eye coverings.
• If possible no noise, inc keeping any verbal questions or comments to the minimum necessary & quietly spoken.
• Encourage her to sleep if possible.
• If she's hungry/thirsty, sips of lukewarm smoothie or lukewarm soup (lukewarm meaning close to 37°C, human body temperature, so it's not creating a demand on the body to warm it up or cool it down).
• Consider possibilities of spoon feeding or using a straw, so she has to move as little as possible to eat/drink & doesn't have to sit up.It's not clear to me whether she now has symptoms which might _not_ be PEM. That's tricky, because you don't want to miss something that wants treating in a different way. Any reason to think that, or is it all consistent with worse than usual PEM?
Also how much influence do you have over this? For example are you with her yourself or only able to advise? Would other people be likely to sabotage the low noise & low light due to not thinking it's important?
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What to do in a severe PEM crisis?
Is it time to call an ambulance anyway and maybe go with her to try to advocate?
Any BC/Canada specific advice about getting emergency home care?
Just rest until morning?
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What to do in a severe PEM crisis?
Is it time to call an ambulance anyway and maybe go with her to try to advocate?
Any BC/Canada specific advice about getting emergency home care?
Just rest until morning?
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Emergency advice request about #MECFS severe PEM-- a local person who is normally severe/mostly bedbound is having a crisis where she is experiencing very severe PEM-- exhaustion from moving in bed, etc-- and she is scared. She does not have understanding or supportive caregivers. For other diseases this would be a time to call an ambulance but we know that can cause a lot of harm in severe PEM.
What are ways to support in this situation? (more Qs follow)
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Emergency advice request about #MECFS severe PEM-- a local person who is normally severe/mostly bedbound is having a crisis where she is experiencing very severe PEM-- exhaustion from moving in bed, etc-- and she is scared. She does not have understanding or supportive caregivers. For other diseases this would be a time to call an ambulance but we know that can cause a lot of harm in severe PEM.
What are ways to support in this situation? (more Qs follow)
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Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of August 3 - 9.
https://s4me.info/threads/news-in-brief-august-2026.51739/#post-712533
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Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of August 3 - 9.
https://s4me.info/threads/news-in-brief-august-2026.51739/#post-712533
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Beautiful writing from Naomi Whittingham's blog, A Life Hidden:
"The Burden of Chronic Illness That I Rarely Talk About"
https://alifehidden.com/2026/07/30/burden/#
"Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear"
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Beautiful writing from Naomi Whittingham's blog, A Life Hidden:
"The Burden of Chronic Illness That I Rarely Talk About"
https://alifehidden.com/2026/07/30/burden/#
"Today’s suffering, however bad it may be, is usually not the hardest part: it’s tomorrow’s uncertainty that is heaviest to bear"
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Long COVID The Answers: Biological evidence for #LongCOVID, post-exertional malaise (Part I)
https://youtu.be/3IFHSPlFY6E?si=qA6trWOZLuQlCapQ
Dr Funmi Okunola interviews Profs Rob Wüst & Mark Faghy about their work. Duration: 33 minutes. Part 1 of a 2-part podcast special.
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Long COVID The Answers: Biological evidence for #LongCOVID, post-exertional malaise (Part I)
https://youtu.be/3IFHSPlFY6E?si=qA6trWOZLuQlCapQ
Dr Funmi Okunola interviews Profs Rob Wüst & Mark Faghy about their work. Duration: 33 minutes. Part 1 of a 2-part podcast special.
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CW: long covid, me/cfs, venty (as usual)
I think I've finally figured out some things that might allow me to not be bedridden 24/7 and maybe do something like reading a time or two a month, but gods, I'm scared to the hells I'm going to get too excited and overdo it and just nuke the last few months' worth of progress :not_like_this:
a video popped up today about jockey Uchida Hiroyuki (Uchipaku) having to go through rehab for his shoulder muscles after recently being thrown pretty badly, and... it's making me feel things...
he'a 57, literally old enough to be my parent, and watching him makes me want to do those exercises... but I literally can't...
me/cfs means I pay extra, and my body doesn't take it as a chance for geowth, it takes it as a badly damaging event that we shouldn't repeat :cat_facepalm:
before long-covid and me/cfs, I could do those steengthening exercises... I was most of the way to a aingle-leg body-weight squat... I could do what I wanted with my body for hours and hours with nothing but a bit of soreness...
and now, I can't so things that would normally strengthen my body because it just ends up harming me instead :cat_dead: I wanna do squats :axolotl_angry:
I can even technically do them (though I swear my muscles have shrunk 50%), but like, in a "Gundam pilot does something their mobile suit is *technically* specified to be able to do in the manual" sort of way :giggle:
anyway, long covid is really, really dumb :frog_sus:
p.s. Uchipaku is probably most notable for being the jockey of Gold Ship, especially during the Satsuki-Shō when the Golshi-warp incident occured :cat_giggle: but he also has 4500+ wins in JRA central races, so I hope he's able to get back to racing soon :hug_love:
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If you've ever wanted to see the word 'bioenergetic' used in a genuine, non-woo-woo, science paper, it's your lucky day:
ME/CFS and Long COVID Demonstrate Similar Bioenergetic Impairment and Recovery Failure on Two-Day Cardiopulmonary Exercise Testing — Davenport et al
"In both males and females, VO2 and workload were significantly different between patients and non-disabled controls, and with larger effect sizes at [Ventilatory Anaerobic Threshold] than at maximal exertion."
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Für "Gesunde" - gibt es die überhaupt? - ist es schwer vorstellbar, wie gut es tut, in Räumen zu sein, in denen alle "krank" sind oder Angehörige von Kranken.
In denen Ärzt*innen am Mikro stehen, die sich klar für ihre Patient*innen einsetzen.
Dr. Kacik ist so einer.
#Liegenddemo #Hamburg #MECFS #PostCovid
https://loops.video/v/hoIsUL-E2X -
Der Umgang mit ME/CFS-Betroffenen ist ein ethisches Desaster – so Dr. Kacik.
#mecfs #postcovid #longcovid #liegenddemo
https://katja-diehl.de/der-umgang-mit-me-cfs-betroffenen-ist-ein-ethisches-desaster-so-dr-kacik/
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ME Research UK:
Study finds that sex and menopausal status may shape how immune and gut symptoms appear and interact in people with ME/CFS.
More information: https://tinyurl.com/ya6uf254
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ME Research UK:
A team of researchers recently published a manuscript highlighting that muscle abnormalities in long COVID and ME/CFS.
Press release highlighting the importance of their findings: https://tinyurl.com/3zrppbuw
ME Research UK is acknowledged as one of the funders.
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ME Research UK:
Today is dedicated to raising awareness about #SevereME & remembrance of those who have lost their lives to this debilitating condition, such as Sophia Mirza – a British artist. Her birthday – 8th August – was chosen to mark Severe ME Day.Read more: https://tinyurl.com/severemeday2026
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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From the Netherlands
Wearable Heart Rate Variability Monitoring, Autonomic Dysfunction and Post-exertional Malaise in Long COVID: An Observational Study
https://link.springer.com/article/10.1007/s40279-026-02487-4
Screenshot from latest Science for ME weekly update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers
#HRV #MEcfs #PwME #CFS #ME #MyalgicE
@mecfs
