#me-cfs — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #me-cfs, aggregated by home.social.
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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 hyperpnia (rapid breathing). The assumption is that it must be caused by the other form of overbreathing, 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.
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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/ -
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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 @mecfs -
The union news site Arbetsvärlden in Sweden writes about the hardship patients with ME face when assessed for being fit to work
Google translation links
https://translate.google.com/translate?sl=se&tl=en&u=https://www.arbetsvarlden.se/efter-sex-ar-med-sjukpenning-drogs-allt-in-mitt-batteri-ar-standigt-pa-10-procent/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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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 -
ME/CFS Tube Feeding Survey Report by the British Association of Clinicians in ME/CFS
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 -
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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
@mecfs -
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What cognitive dysfunction (brain fog) in ME/CFS feels like#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME -
Darf es mir gut gehen, obwohl es mir schlecht geht?
Auch inmitten von schwerer Krankheit und Einschränkungen sind schöne und zufriedene Momente möglich. Diese Momente sind erlaubt.
Und ein bisschen mehr "im Moment sein" würde uns allen gut tun.
Zu meinem aktuellen Blogartikel: https://longcovidonline.blog/2026/09/07/darf-es-mir-gut-gehen-obwohl-es-mir-schlecht-geht/
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Hier muss dringend etwas unternommen werden. Betroffene werden zur Teilnahme an Rehabilitationsmaßnahmen gezwungen, die potenziell ihren Gesundheitszustand verschlechtern.
Die Petition Keine Reha-Pflicht bei ME/CFS – Rehabilitation muss freiwillig sein ist mir wichtig! ✍️ Bitte unterschreibe auch:
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(Clarence, placeholder name:) I have a question! (Boosts welcome!) We really like playing Pokemon Go. Unfortunately, it is not designed for mostly bedbound people.
Are there other mobile games like it without the real-life exploring aspect? I'm thinking like
- no/minimal ads
- social aspects, popular/relatively easy to find actual friends to friend in-game
- no/minimal/extremely easy combat, pretty chill (I really mean this, it needs to be a rest activity, as close as possible to meditation. We can't even transfer Pokemon while resting, it's too cognitively taxing)
- cute, nice to look at
- well-made, minimal bugs
- a ton of stuff to doI feel like Hay Day is the closest that I know of. The problem is, we don't know any other Hay Day gamers.
We also play Pokemon Sleep, but that's more of a "check it every few hours" game, and we have a significant sleep disorder, which the game doesn't like 😅
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"Why Is No One Talking About Long COVID?
— Attention has waned but patients are still suffering"
https://www.medpagetoday.com/opinion/second-opinions/122902
Pretty good basic info, but sadly ME/CFS is not mentioned even though COVID infections can trigger ME/CFS. The number of ME/CFS cases have increased since the pandemic.
See this Bateman Horne blog post ("COVID-19 Triggers ME/CFS") for more:
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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 -
A German petition states people with ME/CFS should not be obliged to undergo rehabilitation against their will.Refusal or non-participation in rehabilitation must not lead to disadvantages under social law. It has been signed more than 3000 times & has a 30000-signature target
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“No person with a serious disability should have to fight the very systems that are supposed to provide care and protection.”#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs