#me-cfs — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #me-cfs, aggregated by home.social.
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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 -
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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
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The new #Apple Watch Series 12 with increased Heart Rate Variability tracking will help me with pacing and preventing Post-Exertional Malaise *so much*. The impacts this will have on my #health cannot be overstated; it literally made me cry watching the announcement and couldn’t come at a better time! Thank you, Apple! #hrv #pem #pacing #SEID #meCFS
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RE: https://disabled.social/@tomkindlon/117238006960525328
I’m sure I can speak for the PACE Trial investigators [Peter White, Michael Sharpe & Trudie Chalder] when I say they love when the re-analyses are highlighted online. 😜
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs -
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I very rarely post on LinkedIn these days but decided to do a longer post today on this.With a lot of researchers posting less often if at all on X, more are communicating via LinkedIn.
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs
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Morgen bin ich im AHK und bekomme hoffentlich eine PAIS Diagnostik.
Vielleicht ja sogar einen Plan, wie ich nächstes Jahr nicht das halbe Jahr im Krankenstand sein muss?
Und hoffentlich keine Infektion.
Drückt mir die Daumen!#akh #pais #PostCovid #MECFS #LongCovid #covid #corona #diagnostik
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Universal Credit audit done (I hope), brain fried.
One nasty thing with ME/CFS is that some mental tasks that should be easy just aren't. The knock on has been me relying on my password book today because now I've done the audit, I can't access the bit of my memory that stores those. It's very weird. I also have a low level headache now and a bit of a stutter/slur when speaking.
So I'm going to rest until this eases off and I can think a bit more clearly.
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10 years today, after a David vs Goliath Freedom of information (FOI) legal battle that damaged Alem Matthees' health, Peter White et al were forced to release data from PACETrial that cost UK taxpayers £5M showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS.
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Comprehensive review of myalgic encephalomyelitis/chronic fatigue syndrome
https://link.springer.com/article/10.1186/s12967-026-08833-4
Screenshot from latest Science for ME weekly update
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10/
What cognitive dysfunction (brain fog) in ME/CFS feels like#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
@mecfs -
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What cognitive dysfunction (brain fog) in ME/CFS feels like#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
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New:
Stigmatization in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A scoping review
https://psycnet.apa.org/record/2028-18274-001
"Individuals with ME/CFS can be profoundly affected by stigmatization"
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Impact of cognitive dysfunction in ME/CFS from ME Research UKCareers are impacted, cherished hobbies become exhausting, and relationships grow strained.
https://www.meresearch.org.uk/the-experience-and-impact-of-cognitive-dysfunction-in-me-cfs/
#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME -
“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee Discusses his Royal Honor” By David Tuller