#pwme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pwme, aggregated by home.social.
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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
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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
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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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3è 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/
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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/
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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.
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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/
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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 conforthttps://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
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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-719676Screenshot from latest Science for ME weekly update
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Here's the latest News in Brief (Sept. 7 - 13) 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-721450
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 😁
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Here's the latest News in Brief (Sept. 7 - 13) 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-721450
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 😁
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Here's the latest News in Brief (Sept. 7 - 13) 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-721450
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 😁
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Here's the latest News in Brief (Sept. 7 - 13) 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-721450
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 😁
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Here's the latest News in Brief (Sept. 7 - 13) 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-721450
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 😁
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From Germany 🇩🇪
Postural orthostatic tachycardia syndrome in adolescents with ME/CFS
https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2026.1836407/full
Screenshot from latest Science for ME weekly update
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From Germany 🇩🇪
Postural orthostatic tachycardia syndrome in adolescents with ME/CFS
https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2026.1836407/full
Screenshot from latest Science for ME weekly update
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From Germany 🇩🇪
Postural orthostatic tachycardia syndrome in adolescents with ME/CFS
https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2026.1836407/full
Screenshot from latest Science for ME weekly update
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From Germany 🇩🇪
Postural orthostatic tachycardia syndrome in adolescents with ME/CFS
https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2026.1836407/full
Screenshot from latest Science for ME weekly update
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From Germany 🇩🇪
Postural orthostatic tachycardia syndrome in adolescents with ME/CFS
https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2026.1836407/full
Screenshot from latest Science for ME weekly update
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Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon on Wednesday, September 30
Hopefully we’ll see some of you there
https://irishmecfs.org/blog/wednesday-september-30-dublin-informal-mecfs-social-meet-up-hosted-by-tom-kindlon-irish-mecfs-associationCarers/parents/similar welcome.
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Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon on Wednesday, September 30
Hopefully we’ll see some of you there
https://irishmecfs.org/blog/wednesday-september-30-dublin-informal-mecfs-social-meet-up-hosted-by-tom-kindlon-irish-mecfs-associationCarers/parents/similar welcome.
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Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon on Wednesday, September 30
Hopefully we’ll see some of you there
https://irishmecfs.org/blog/wednesday-september-30-dublin-informal-mecfs-social-meet-up-hosted-by-tom-kindlon-irish-mecfs-associationCarers/parents/similar welcome.
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Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon on Wednesday, September 30
Hopefully we’ll see some of you there
https://irishmecfs.org/blog/wednesday-september-30-dublin-informal-mecfs-social-meet-up-hosted-by-tom-kindlon-irish-mecfs-associationCarers/parents/similar welcome.
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Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon on Wednesday, September 30
Hopefully we’ll see some of you there
https://irishmecfs.org/blog/wednesday-september-30-dublin-informal-mecfs-social-meet-up-hosted-by-tom-kindlon-irish-mecfs-associationCarers/parents/similar welcome.
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“Discussion of LP, its use of NLP, the SMILE trial, the Jason Busse LP trial was thorough and accurate.”
#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs @longcovid -
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“Discussion of LP, its use of NLP, the SMILE trial, the Jason Busse LP trial was thorough and accurate.”
#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs @longcovid -
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“Discussion of LP, its use of NLP, the SMILE trial, the Jason Busse LP trial was thorough and accurate.”
#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs @longcovid -
2/
“Discussion of LP, its use of NLP, the SMILE trial, the Jason Busse LP trial was thorough and accurate.”
#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs @longcovid -
2/
“Discussion of LP, its use of NLP, the SMILE trial, the Jason Busse LP trial was thorough and accurate.”
#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs @longcovid -
Conspirituality 325: Long COVID Profiteers
The second half of this podcast episode discusses Long Covid, ME/CFS, "neuro-bollocks"-treatments such as the Lightning Process, the weak scientific methods behind trials as FALCON, SMILE and PACE and more.
https://www.conspirituality.net/episodes/326-long-covid-updateHaven't listened so far but saw praise for it
#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid
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Conspirituality 325: Long COVID Profiteers
The second half of this podcast episode discusses Long Covid, ME/CFS, "neuro-bollocks"-treatments such as the Lightning Process, the weak scientific methods behind trials as FALCON, SMILE and PACE and more.
https://www.conspirituality.net/episodes/326-long-covid-updateHaven't listened so far but saw praise for it
#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid
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Conspirituality 325: Long COVID Profiteers
The second half of this podcast episode discusses Long Covid, ME/CFS, "neuro-bollocks"-treatments such as the Lightning Process, the weak scientific methods behind trials as FALCON, SMILE and PACE and more.
https://www.conspirituality.net/episodes/326-long-covid-updateHaven't listened so far but saw praise for it
#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid
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Conspirituality 325: Long COVID Profiteers
The second half of this podcast episode discusses Long Covid, ME/CFS, "neuro-bollocks"-treatments such as the Lightning Process, the weak scientific methods behind trials as FALCON, SMILE and PACE and more.
https://www.conspirituality.net/episodes/326-long-covid-updateHaven't listened so far but saw praise for it
#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid
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Conspirituality 325: Long COVID Profiteers
The second half of this podcast episode discusses Long Covid, ME/CFS, "neuro-bollocks"-treatments such as the Lightning Process, the weak scientific methods behind trials as FALCON, SMILE and PACE and more.
https://www.conspirituality.net/episodes/326-long-covid-updateHaven't listened so far but saw praise for it
#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid
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NINDS & MECFSnet - ME/CFS Exchange Webinar Series
Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
Thursday, Oct. 8, 1 - 3 pm ETRegister
https://rtiorg.zoom.us/webinar/register/WN_7FrDcz58QtWn0IfMo9AWLQ#/registration -
NINDS & MECFSnet - ME/CFS Exchange Webinar Series
Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
Thursday, Oct. 8, 1 - 3 pm ETRegister
https://rtiorg.zoom.us/webinar/register/WN_7FrDcz58QtWn0IfMo9AWLQ#/registration -
NINDS & MECFSnet - ME/CFS Exchange Webinar Series
Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
Thursday, Oct. 8, 1 - 3 pm ETRegister
https://rtiorg.zoom.us/webinar/register/WN_7FrDcz58QtWn0IfMo9AWLQ#/registration -
NINDS & MECFSnet - ME/CFS Exchange Webinar Series
Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
Thursday, Oct. 8, 1 - 3 pm ETRegister
https://rtiorg.zoom.us/webinar/register/WN_7FrDcz58QtWn0IfMo9AWLQ#/registration -
NINDS & MECFSnet - ME/CFS Exchange Webinar Series
Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
Thursday, Oct. 8, 1 - 3 pm ETRegister
https://rtiorg.zoom.us/webinar/register/WN_7FrDcz58QtWn0IfMo9AWLQ#/registration -
The Hidden Hierarchy of Illness
https://journals.sagepub.com/doi/full/10.1177/27536351261431723
Screenshot from September AMMES newsletter
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The Hidden Hierarchy of Illness
https://journals.sagepub.com/doi/full/10.1177/27536351261431723
Screenshot from September AMMES newsletter
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The Hidden Hierarchy of Illness
https://journals.sagepub.com/doi/full/10.1177/27536351261431723
Screenshot from September AMMES newsletter
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The Hidden Hierarchy of Illness
https://journals.sagepub.com/doi/full/10.1177/27536351261431723
Screenshot from September AMMES newsletter
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The Hidden Hierarchy of Illness
https://journals.sagepub.com/doi/full/10.1177/27536351261431723
Screenshot from September AMMES newsletter
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Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”
Screenshot from September AMMES newsletter
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Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”
Screenshot from September AMMES newsletter
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Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”
Screenshot from September AMMES newsletter
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Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”
Screenshot from September AMMES newsletter
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Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”
Screenshot from September AMMES newsletter