#pwme — Public Fediverse posts

Myalgic encephalomyelitis/chronic fatigue syndrome and overlapping post-acute infection syndromes: international expert consensus framework for diagnostic standardization

https://link.springer.com/article/10.1186/s12916-026-05161-8

https://s4me.info/threads/me-cfs-and-overlapping-post-acute-infection-syndromes-international-expert-consensus-framework-for-diagnostic-standardization-2026-kujawski-et-al.52352/

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS
@mecfs

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My initial thoughts for what they are worth on a video on ME/CFS which has over 170,000 views in the first 6 days!

https://www.youtube.com/watch?v=GILP6q7zUGY

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

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My initial thoughts for what they are worth on a video on ME/CFS which has over 170,000 views in the first 6 days!

https://www.youtube.com/watch?v=GILP6q7zUGY

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

2/
My initial thoughts for what they are worth on a video on ME/CFS which has over 170,000 views in the first 6 days!

https://www.youtube.com/watch?v=GILP6q7zUGY

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

2/
My initial thoughts for what they are worth on a video on ME/CFS which has over 170,000 views in the first 6 days!

https://www.youtube.com/watch?v=GILP6q7zUGY

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

2/
My initial thoughts for what they are worth on a video on ME/CFS which has over 170,000 views in the first 6 days!

https://www.youtube.com/watch?v=GILP6q7zUGY

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

A YouTuber, Skallagrim, with 1.63 million followers has created a 31-minute video, “What ME/CFS is, and how it is wrecking me” with over 170,000 views

https://www.youtube.com/watch?v=GILP6q7zUGY

See next post for a few quick thoughts

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

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A YouTuber, Skallagrim, with 1.63 million followers has created a 31-minute video, “What ME/CFS is, and how it is wrecking me” with over 170,000 views

https://www.youtube.com/watch?v=GILP6q7zUGY

See next post for a few quick thoughts

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

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A YouTuber, Skallagrim, with 1.63 million followers has created a 31-minute video, “What ME/CFS is, and how it is wrecking me” with over 170,000 views

https://www.youtube.com/watch?v=GILP6q7zUGY

See next post for a few quick thoughts

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

1/

A YouTuber, Skallagrim, with 1.63 million followers has created a 31-minute video, “What ME/CFS is, and how it is wrecking me” with over 170,000 views

https://www.youtube.com/watch?v=GILP6q7zUGY

See next post for a few quick thoughts

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

1/

A YouTuber, Skallagrim, with 1.63 million followers has created a 31-minute video, “What ME/CFS is, and how it is wrecking me” with over 170,000 views

https://www.youtube.com/watch?v=GILP6q7zUGY

See next post for a few quick thoughts

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

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“Why can medicine help so little?”

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

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“Why can medicine help so little?”

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

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“Why can medicine help so little?”

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

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“Why can medicine help so little?”

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

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“Why can medicine help so little?”

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

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“What is pacing?”

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

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“What is pacing?”

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

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“What is pacing?”

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

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“What is pacing?”

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

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“What is pacing?”

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

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Extract from "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

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Extract from "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

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Extract from "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

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Extract from "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

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Extract from "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

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

We have been asked the following. Feel free to message us if you prefer:

“any chance please you know of any GPs in Kilkenny city that people are happy with ie they either have some knowledge about ME or at a minimum are sympathetic towards it?”

#MEcfs #Kilkenny #PwME #CFS #KilkennyCity @mecfs #mastodaoine

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From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

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From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

3/

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

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From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

3/

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

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From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

2/

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

2/

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

2/

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

2/

From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@mecfs

🧵
I thought this 7-page introductory piece written by a medical doctor was very good

"Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

https://storage.e.jimdo.com/file/1caec72a-22b3-4dca-af70-7178d1d8562a/Understanding_MEcfs.pdf

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

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🧵
I thought this 7-page introductory piece written by a medical doctor was very good

"Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

https://storage.e.jimdo.com/file/1caec72a-22b3-4dca-af70-7178d1d8562a/Understanding_MEcfs.pdf

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

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🧵
I thought this 7-page introductory piece written by a medical doctor was very good

"Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

https://storage.e.jimdo.com/file/1caec72a-22b3-4dca-af70-7178d1d8562a/Understanding_MEcfs.pdf

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

1/

🧵
I thought this 7-page introductory piece written by a medical doctor was very good

"Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

https://storage.e.jimdo.com/file/1caec72a-22b3-4dca-af70-7178d1d8562a/Understanding_MEcfs.pdf

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

1/

🧵
I thought this 7-page introductory piece written by a medical doctor was very good

"Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

https://storage.e.jimdo.com/file/1caec72a-22b3-4dca-af70-7178d1d8562a/Understanding_MEcfs.pdf

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

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Pour ne rien rater de nos nouvelles publications et de nos invitations à contribuer, abonnez-vous à notre newsletter !

https://comprendrelem.fr/a-propos/newsletter2/

#pwME #paEM #ME/CFS #EM/SFC

4è principe du pacing : Ergonomie et confort

L’aménagement de l’espace, en particulier de l’espace domestique, est une pierre d’angle du pacing. Il existe une multitude d’objets qui permettent de dépenser beaucoup moins d’énergie ou de nous protéger des stimulus. De même, la réorganisation de sa mobilité permet, elle aussi, de réduire les efforts inutiles.

Accessibilité, ergonomie et autonomie sont les principes fondamentaux de cette démarche.

Tous les détails sur le site : https://comprendrelem.fr/pacing/methodes-2/ergonomie/

#pwME #paEM #ME/CFS #EM/SFC #Pacing

3è principe du pacing : Trouver son rythme

L’idée est de trouver un équilibre durable en alternant des phases de repos et d’activité, en modulant leur durée et leur fréquence. Les phases de repos doivent être disséminées dans la journée et dans la semaine pour permettre de baisser la fréquence cardiaque. La régularité est essentielle.

Le rythme dépend fortement de l'état de sévérité de l'EM.

Tous les détails sur le site : https://comprendrelem.fr/pacing/methodes-2/trouver-son-rythme/

#pwME #paEM #ME/CFS #EM/SFC #Pacing

2è principe du pacing : Un vrai repos

Pour pouvoir véritablement récupérer des forces, alors même que le corps n’est plus capable d’une vraie récupération, un vrai repos est indispensable. Un bon repos fait redescendre la fréquence cardiaque, permet un début de récupération musculaire, émotionnelle et cognitive, et prépare aux activités à venir.

Il ne s’agit pas de « ne rien faire » devant un écran ou en papotant avec des proches. Le repos doit être intégral : allongé, muscles au repos, sans stimulation sensorielle (ni lumière, ni son), en détente émotionnelle et musculaire.

https://comprendrelem.fr/pacing/methodes-2/un-vrai-repos/

#pwME #paEM #ME/CFS #EM/SFC #Pacing

1er principe du pacing : Réduire ses activités

Le pacing pour l’EM nécessite d’abord de réduire nos activités. Cette étape n’est pas facile, mais elle est cruciale : il n’est pas possible d’aller mieux si on continue comme avant.

Selon notre état (léger, modéré, sévère, très sévère ou extrêmement sévère), on doit renoncer à plus ou moins d’activités. L’effort pour les paEM se loge parfois dans des activités banales.

Tous les détails sur le site : https://comprendrelem.fr/pacing/methodes-2/reduire-ses-activites/

#pwME #paEM #ME/CFS #EM/SFC #Pacing

Encéphalomyélite Myalgique : Par où commencer le pacing ?

Retrouvez dans la revue nos explications didactiques et illustrées des quatre grands principes fondamentaux.

1. Réduire ses activités
2. Un vrai repos
3. Trouver son rythme
4. Ergonomie et confort

https://comprendrelem.fr/pacing/methodes-2/

Et vous, vous faites comment ? Quels obstacles vous rencontrez ? Avez-vous le soutien dont vous avez besoin ?

Nous poursuivons nos réflexions sur ce qui rend le pacing parfois impossible ou impensable. Commentez ou envoyez-nous votre point de vue ! 1/5

#pwME #paEM #ME/CFS #EM/SFC #Pacing

The advocacy group NichtGenesen @NichtGenesen has written a 11-page rebuttal of a book chapter published in Psychotherapie.

https://link.springer.com/chapter/10.1007/978-3-662-72268-8_91

https://drive.google.com/file/d/1_9Tty4qG9O_7ce6Az0xuDDBddK0tvzzY/view

Automated translations
https://s4me.info/threads/chronisches-fatigue-syndrom-2026-alexa-alica-kupferschmitt-volker-k%C3%B6llner.52263/post-719676

https://s4me.info/threads/chronisches-fatigue-syndrom-2026-alexa-alica-kupferschmitt-volker-k%C3%B6llner.52263/post-719677

https://s4me.info/threads/chronisches-fatigue-syndrom-2026-alexa-alica-kupferschmitt-volker-k%C3%B6llner.52263/post-719687

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS #ME #MyalgicE
@mecfs #MEcfs_de

The advocacy group NichtGenesen @NichtGenesen has written a 11-page rebuttal of a book chapter published in Psychotherapie.

https://link.springer.com/chapter/10.1007/978-3-662-72268-8_91

https://drive.google.com/file/d/1_9Tty4qG9O_7ce6Az0xuDDBddK0tvzzY/view

Automated translations
https://s4me.info/threads/chronisches-fatigue-syndrom-2026-alexa-alica-kupferschmitt-volker-k%C3%B6llner.52263/post-719676

https://s4me.info/threads/chronisches-fatigue-syndrom-2026-alexa-alica-kupferschmitt-volker-k%C3%B6llner.52263/post-719677

https://s4me.info/threads/chronisches-fatigue-syndrom-2026-alexa-alica-kupferschmitt-volker-k%C3%B6llner.52263/post-719687

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #CFS #ME #MyalgicE
@mecfs #MEcfs_de