#me-cfs — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #me-cfs, aggregated by home.social.
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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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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
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CW: :boosts_ok: disability, long covid, sex, TMI, educational
look, I try not to overshare, but there's something that I need people to understand so I'm writing it and my reason is "I'm a bard and a succubus, what did you expect? :bear_shrug: " (in return, I'll use capital letters and punctuation and stuff)
I and a lot of others disabled by long covid repeat the same line over and over: mask up and do what you can to prevent spread.
But... I don't think people quite get the reality of disability via long covid and me/cfs. I'm not missing a limb or a sensory organ. Physically, my body exists in its entirety. The underlying systems, though? absolutely shot. I went from being able to heavily exhert myself over 8~10h per day to not being able to stand more than 5 minutes before needing multiple hours of lay-down rest. What's more, me/cfs means over-exherting myself *decreases* my max stamina unlike a healthy mammalian body.
Simply put, this means I can't have sex. 5 minutes of exhertion could set my already shot systems back a month or more. 10+ minutes could set me back half a year. (Of course, this also means I can't do any other sort of activity that involves anything physical and that includes talking which I get to do 1 hour of per week.)
Oh, what's that? Partner literally in bed, both of us wanting to do things? Too bad. Frustrated from not being able to have sex for over a year despite multiple chances to do so? Too bad. Want to at least give myself some relief? How many months of recovery am I willing to throw away?
No matter how pent up I get, no matter how many chances and willing partners I have, I can't do anything about it unless I'm willing to further destroy what little function I have left.
By not making and taking other precautions, that's the hell that you attempt to kick people into. On purpose.
#Disability #Covid #LongCovid #MECFS
p.s. Just to super clarify, there is no way for me to efficiency my way out of this reality. I could be an absolute pillow princess and do 0% of the work and that would still cause my body damage after 5 minutes, probably sooner.
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What cognitive dysfunction (brain fog) in ME/CFS feels like#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
@mecfs -
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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 -
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What cognitive dysfunction (brain fog) in ME/CFS feels like#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME @mecfs
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CW: In case I get hit by a bus
I've been reading up on some interesting topics and have a few ideas, but have not posted on them since I feel like I need to read and study more before I post. At the rate I'm going - this might never happen.
So here are some quick notes on what I've been reading up on lately -
potassium - it's great stuff. It lowers blood pressure and promotes blood sugar regulation. What spikes bp and glucose - stress. Could potassium supplementation blunt the effects of stress overall? Perhaps -
Rapid treatment of depression with potassium supplementation: relative deficiency of potassium ions and possible pathogenesis—a case report [2025]
https://doi.org/10.1186/s13256-025-05693-2However, people should consult their doctor before supplementing with potassium since it is can be dangerous to people with kidney disease (and many people are unaware they have chronic kidney disease) or if taking certain medications.
Then I was wondering how potassium supplementation might impact anemia and iron regulation since RAAS inhibition can cause anemia. I turned up a bunch of articles on the topic, but have not yet read them. It might explain why blackstrap molasses is a folk remedy for anemia (recommended to me by a Red Cross nurse) . It contains some iron, but not that much; however, it does contain a a fair amount potassium (but unfortunately it also often contains lead). The most notable micronutrient in blackstrap molasses is copper.
I'm really excited by an article I turned up the other day on one of my favorite topics - CO2. There's the mystery of hypocapnia in ME/CFS in the absence of tachypnea (rapid breathing). The assumption is that it must be caused by the other form of hyperventilation, hyperpnea (deep breathing). *
My daughter had her arterial CO2 measured and was found to be hypocapnic. I was with her at the blood draw; she was not breathing rapidly and her posture isn't conducive to deep breathing. So I have wondered ever since - what's up with CO2?
* my hypothesis essay from 2022 :
Carbonic anhydrase activity is increased in myalgic encephalomyelitis/chronic fatigue syndrome
https://docs.google.com/document/d/14rywcV63DLOvHBGr9aGC155it5j2dA9EJJHVAGTsPlI/edit?usp=sharingMy hypothesis doesn't really explain why end tidal CO2 might be lower, since CO2 would have to be off-loaded eventually.
Last week I stumbled on this medical hypothesis paper while looking into whether lower esophageal sphincter function is affected by CO2 (apparently it is):
Theory of gastric CO2 ventilation and its control during respiratory acidosis: Implications for central chemosensitivity, pH regulation, and diseases causing chronic CO2 retention [2011]
https://doi.org/10.1016/j.resp.2010.12.001Gastric CO2 ventilation!!!
This is just - wow!
The article is paywalled but I was able to obtain a copy through Elsevier's Patient Access program. It is not easy reading and it will take me a while to get through it.I also found a few articles on diaphragmatic breathing for the treatment of GERD - there have been some successful clinical trials. I may post on that topic soon since these should be quick reads and I don't think many people know about it.
#breathing #CO2 #GERD #potassium #anemia #MECFS #RAAS #hyperventilation
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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 -
PRIME International Symposium a two-day hybrid event exploring the latest developments in ME/CFS research
Links
https://www.actionforme.org.uk/register-for-the-prime-international-symposium/https://www.tickettailor.com/events/universityofedinburgh12/2155140
Screenshot from latest Science for ME weekly update
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RE: https://disabled.social/@tomkindlon/117224440060658957
All of this amounts to you having to do a constant and conscious effort just to be yourself, not to get spread out, your personality diffusing away from you somehow.
I can't explain to you how tiring this is. I've never experienced anything like it before I got sick.
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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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Check out the latest News in Brief (Aug. 31 - Sept. 6) 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-september-2026.52320/#post-719398
Public posts on the forum can be read by anyone, but if you'd like to join the discussion then you'll need to become a forum member. It's free 😁
https://
s4me.info/threads/welcome.38181/