#me-cfs — Public Fediverse posts

6/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

@mecfs

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/

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC #S4ME

6/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers 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/

https://www-arbetsvarlden-se.translate.goog/forsakringskassan-om-kritiken-allt-ska-vagas-in/?_x_tr_sl=se&_x_tr_tl=en&_x_tr_hl=en-GB

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS
@mecfs

5/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME
@mecfs

5/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers 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

ME/CFS Tube Feeding Survey Report by the British Association of Clinicians in ME/CFS

https://meassociation.org.uk/wp-content/uploads/2026/09/BACME-MECFS-Tube-Feeding-Survey-Report-Sept-2026.pdf

https://s4me.info/threads/uk-bacme-tube-feeding-survey-2025-closes-30th-september-2025.45619/post-718718

Screenshot from latest Science for ME weekly update

#MEcfs #SevereME #PwME #CFS @mecfs

4/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME

@mecfs

4/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers 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

3/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME

@mecfs

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/

#longcovid #mecfs #achtsamkeit #littlethings #mentalhealth

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:

https://openpetition.de/qfwjf

#mecfs #longcovid #postcovid

(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 do

I 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 😅

#MEcfs #gaming

"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:

https://batemanhornecenter.org/covid-19-triggers-me-cfs/

@longcovid @mecfs

#COVID #COVID19 #LongCovid #MEcfs #CovidIsNotOver

3/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers 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

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

https://www.openpetition.de/petition/online/keine-reha-pflicht-bei-me-cfs-rehabilitation-muss-freiwillig-sein

Google translation
https://www-openpetition-de.translate.goog/petition/online/keine-reha-pflicht-bei-me-cfs-rehabilitation-muss-freiwillig-sein?_x_tr_sl=de&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

#MEcfs #PwME #CFS @mecfs #mecfs_de

7/
“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

2/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers 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

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 Aug. 31 - Sept. 6.

https://s4me.info/threads/news-in-brief-september-2026.52320/#post-719398

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC

6/
“In countries with fewer resources, the problem may be limited access to care. But even in countries with well-developed healthcare and social systems, many people with ME continue to experience harm because outdated beliefs, lack of training and poor implementation of current knowledge persist. Resources alone are not enough if the system does not recognise the disease and protect the patient.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

3/

“rest is rarely respected as the critical & often sole medical intervention it is. For this reason, even those who mean us no harm may actively encourage us to push through dangerous symptoms, believing our mindset to be, at least in part, playing a role.”

#MEcfs #LongCovid #Pacing #PwME #CFS
@mecfs @longcovid