#me-cfs — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #me-cfs, aggregated by home.social.
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The Hidden Hierarchy of Illness
https://journals.sagepub.com/doi/full/10.1177/27536351261431723
Screenshot from September AMMES newsletter
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Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”
Screenshot from September AMMES newsletter
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ME Research UK:
A study led by Prof. Dmitri Pchejetski has found “shared biology” in five fatigue-related illnesses: ME/CFS, long COVID, PTSD, MS, and RA. However, there are important methodological limitations that must be considered. More info: https://bit.ly/4xPOzid
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ME Research UK
In the third deep-dive of our weekly Symptom Saturday series, we explore sleep dysfunction in ME/CFS – including lived experience, different patterns of sleep disruption, and research suggesting challenges across the brain and nervous system.
Read more:
https://www.meresearch.org.uk/sleep-dysfunction-in-me-cfs/#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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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 Sept. 7 - 13.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-721450
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CW: :boosts_ok: Trans Mutual Aid
If you don't already know me, I'm a heavily disabled poc trans woman who's been bedridden by long covid and me/cfs for the last year (and dealing with long covid for 3ish). I was hoping not to have to make this post but with the way everything is getting more and more expensive in the US right now, I need to.
I'm trying to raise 500 for food and 200 for miscellaneous daily expenses to tide me over for the next few months :frog_blush:
(best option for me) Venmo: OctaviaConAmore
Paypal: https://paypal.me/OctaviaConAmore
Ko-fi: https://ko-fi.com/octaviaconamore
(remember to click the one-time option unless you really want to donate every month :mew_giggle: )(Unfortunately, options other than Venmo take pretty annoying chunks out, but if Venmo isn't an option, they're there as backup.)
Current total: 250/700
If you can't help by donating, please consider helping this post get around by boosting it :hug_love
#MutualAid #TransMutualAid #DisabilityMutualAid #CrowdFund #TransCrowdFund #DisabilityCrowdFund #HelpFolksLive2026 #Covid #LongCovid #MECFS
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Polly Patterson - Supporting Clients Through Medical Gaslighting
https://chroniclivingtherapy.com/supporting-clients-through-medical-gaslighting/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MedicalGaslighting #MEcfs #PwME #LongCovid #chronicillness
@mecfs @longcovid #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll -
5/
Thanks to anyone who has liked and/or reposted my LinkedIn post. It now has over 5000 impressions so hopefully has educated quite a number of people about it.
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Therapy via Messaging
https://chroniclivingtherapy.com/insights-text-based-therapy/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MEcfs #Spoonies #PwME #Spoonie #SevereME #LongCovid #CFS #chronicillness
@mecfs @longcovid #POTS @pots -
Watch for free a 15-minute fictional film on person with an unspecified invisible chronic illness
https://www.underground-cinema.com/screening-room?wix-vod-video-id=e133c0f3001b4d09ad9e8ed8aab8c804&wix-vod-comp-id=comp-mtueb2ju*just create a login & scroll to see Warrior Short Film until midnight Sun 13
As someone who took 5+ years to get diagnosed, sadly I can relate
#chronicillness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs #pots @pots #LongCovid @longcovid #invisibleillness #chronicpain
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Die Zeiten (2024-2025), wo es bei mir zwischen sommerlicher PAIS und Winterdepression jeweils noch ein viertel Jahr Pause gab, sind wohl vorbei.
#pais #mecfs #PostCovid #LongCovid #WinterDepression #depression
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Media gaslighting = patient harm
https://chroniclivingtherapy.com/brain-retraining-merry-go-round/
Screenshot from latest edition of the Chronic Living Therapy email bulletin
#MEcfs #PwME #LongCovid #CFS #chronicillness
@mecfs @longcovid -
"ME, CFS and Long Covid Service Care and Support Plan (CSP)"
3-page document, one of a number of potentially useful files available here:
https://suffolkfed.org.uk/healthcare-services/me-cfs-long-covid/This service development used a lot of patient input
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CW: disability
I think anyone who has followed me for more than a month has a better grasp of what severe disability can look like than the average person, but just in case, here's a little reading :hug_love:
(I prefer referring to them as spell-slots instead of spoons, but referring to them as spoons does come with the benefit that I eventually get to talk about sporks :cat_giggle: )
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Welt-Sepsis-Tag: Wie eine Betroffene aus SH Leben retten will
Und ja: Es fehlt komplett an Wissen und Aufklärung dazu. Personen mit einem schwachen Immunsystem, z.B. durch #MECFS , laufen Gefahr, sich nach operativen Eingriffen s.g. "Krankenhauskeime" zuzuziehen. Bzw. ihr Körper kann bereits vorhandene nicht mehr bekämpfen. Mögliche Folge hiervon: #Sepsis. Ärzte sind darauf unvorbereitet. Hygienemaßnahmen sind oft oft nur unzureichend.
Heute ist #WorldSepsisDay .
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New US 🇺🇸 research
Total blood volume and red blood cell volume are not associated with orthostatic intolerance in adults with myalgic encephalomyelitis/chronic fatigue syndrome
Free fulltext:
https://physoc.onlinelibrary.wiley.com/doi/10.14814/phy2.71087 -
4/
Here is a link to the LinkedIn post on this, if anyone wants to like it/react to it; comment on it; and/or repost it:
https://lnkd.in/p/dx3ptwiSIt already has over 2000 views so likely reaching outside the bubble.
#mecfs #pwme #cfs
@mecfs -
3/
The main re-analysis paper can be read for free here:
Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
https://link.springer.com/article/10.1186/s40359-018-0218-3 -
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Okay, der unsympathischte Arzt hat jetzt doch einen Akt von ganz unten genommen und mich drangenommen.
Er hat mich zum Langzeit-EKG, Langzeit-Blutdruck und Ergometrie zugewiesen und sich sonst für nichts interessiert. Ws wär bei einem längeren Gespräch auch nicht viel anderes als die drei Zuweisungen rausgekommen, aber bei der Nachbesprechung der Befunde hoff ich dann schon an eine*n Ärzt*in zu kommen die*der sich meine Beschwerden und Vorgeschichte anhört und Fragen beantwortet.
Bei dem Arzt wollt ich eh nur schnell raus aus dem Untersuchungsraum, weil der war ziemlich queer-feindlich und auch sehr übergriffig, wie er mir auf die Brust gestarrt hat.
Als nichtbinäre Person mit PAIS ist das Gesundheitssystem in Österreich echt nicht sehr gesundheitsfördernd.
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📰 Auf meinen Websites findet Ihr u. a. nützliche Artikel zum #Klimasystem, zur #Energiewende und zur #Plastikvermeidung.
Aber die Rechnungen werden u.a. noch mit Amazon-Affiliate-Links bezahlt. 😱 Die will ich loswerden, besser früher als später. Das geht nur mit Eurer Hilfe.
Werde Mäzen:
https://steady.page/klimacrew 👥oder hilf’ mit einer Einzelspende:
https://ko-fi.com/tinoeberl 💶#Klimawandel #Klimaschutz #Science #Klimakommunikation #Infektionsschutz #LongCovid #PostCovid #MECFS #Endometriose
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🚨CDC ME/CFS SEC Conference Call 🚨
(SEC = Stakeholder Engagement and Communications)Friday, September 18
3:00 - 4:30 pm EDTGuest speaker Nancy Klimas, MD: "How Progress in Long COVID is helping us understand ME/CFS”
The CDC has not held one of these ME/CFS calls for a long time - last one was Dec. 2024!
Online meeting using Microsoft Teams. Registration required.
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“Trial By Error: A Study of The Switch, New Zealand’s Homegrown Version of the Lightning Process, Yields Meaningless Findings” By David Tuller
#MEcfs #LongCovid #Sceptic #Skeptic #CFS #PwME @mecfs @longcovid