Maud Sac 💢🍉
@papillyon.bsky.social
Severe ME/CFS, mostly bedbound with my three cats.
One of the MillionsMissing since 2018.
#MECFS #ChronicIllness #voxEM
One of the MillionsMissing since 2018.
#MECFS #ChronicIllness #voxEM
Pinned
Maud Sac 💢🍉
@papillyon.bsky.social
· Nov 12
Reposted by Maud Sac 💢🍉
Les cris d'El Hacen Diarra. Son corps sans vie quelques instants plus tard, en plein commissariat du 20e de Paris. Le violence d'Etat. La famille qui porte plainte pour "violences ayant entraîné la mort". Ne jamais se résigner, filmer toujours. www.franceinfo.fr/faits-divers...
January 17, 2026 at 7:23 PM
Les cris d'El Hacen Diarra. Son corps sans vie quelques instants plus tard, en plein commissariat du 20e de Paris. Le violence d'Etat. La famille qui porte plainte pour "violences ayant entraîné la mort". Ne jamais se résigner, filmer toujours. www.franceinfo.fr/faits-divers...
Reposted by Maud Sac 💢🍉
Dernier épisode à priori et une question : pourquoi le niveau d'exigence de la part de Mediapart baisse à ce point sur toutes ces questions liées à la santé et au handicap ?
www.mediapart.fr/journal/inte...
www.mediapart.fr/journal/inte...
« Moi, je ne veux pas vivre ainsi » : au Québec, les personnes atteintes de démence peuvent prévoir leur fin de vie
Depuis 2024, dans la province canadienne, les personnes atteintes de maladie menant à la démence peuvent faire une demande anticipée d’aide à mourir et décider par avance à quel stade de leur maladie…
www.mediapart.fr
January 11, 2026 at 4:56 PM
Dernier épisode à priori et une question : pourquoi le niveau d'exigence de la part de Mediapart baisse à ce point sur toutes ces questions liées à la santé et au handicap ?
www.mediapart.fr/journal/inte...
www.mediapart.fr/journal/inte...
Reposted by Maud Sac 💢🍉
La Cour des Comptes se paye la PCH - Yanous ! Le magazine francophone du handicap www.yanous.com/news/editori...
Inquiétude extrême quand je vois comment à bas bruit tout se construit pour rendre nos conditions de vie totalement intolérables
Inquiétude extrême quand je vois comment à bas bruit tout se construit pour rendre nos conditions de vie totalement intolérables
La Cour des Comptes se paye la PCH - Yanous ! Le magazine francophone du handicap
Tirant argument des disparités territoriales et d’un pilotage national défaillant, elle propose de raboter drastiquement cette prestation.
www.yanous.com
January 10, 2026 at 5:27 PM
La Cour des Comptes se paye la PCH - Yanous ! Le magazine francophone du handicap www.yanous.com/news/editori...
Inquiétude extrême quand je vois comment à bas bruit tout se construit pour rendre nos conditions de vie totalement intolérables
Inquiétude extrême quand je vois comment à bas bruit tout se construit pour rendre nos conditions de vie totalement intolérables
Reposted by Maud Sac 💢🍉
A Black man was killed by ICE (off duty) in Los Angeles on New Year’s Eve. And like Renée Good, he was an American citizen. But most people have not heard about Keith Porter.
I need y’all to realize this. Black people experience this lack of visibility all the time when it comes to being victims.
I need y’all to realize this. Black people experience this lack of visibility all the time when it comes to being victims.
January 10, 2026 at 3:24 PM
A Black man was killed by ICE (off duty) in Los Angeles on New Year’s Eve. And like Renée Good, he was an American citizen. But most people have not heard about Keith Porter.
I need y’all to realize this. Black people experience this lack of visibility all the time when it comes to being victims.
I need y’all to realize this. Black people experience this lack of visibility all the time when it comes to being victims.
Samedi 7 février, on se mobilise pour dénoncer la situation déplorable des malades de l'EM/SFC en France.
Rdv à Marseille !
Rdv à Marseille !
📣 En ce début 2026, rassemblons-nous à #Marseille le 7/02 pour dénoncer la condition des malades d'encéphalomyélite myalgique - #EMSFC !
Les infos ici : bit.ly/voxem-marsei...
Report en cas de 🌧️. Vous ne pouvez pas venir ? Pas de panique, il y aura d’autres occasions !
1/2
Les infos ici : bit.ly/voxem-marsei...
Report en cas de 🌧️. Vous ne pouvez pas venir ? Pas de panique, il y aura d’autres occasions !
1/2
January 4, 2026 at 8:41 PM
Samedi 7 février, on se mobilise pour dénoncer la situation déplorable des malades de l'EM/SFC en France.
Rdv à Marseille !
Rdv à Marseille !
Reposted by Maud Sac 💢🍉
“To strike Venezuela is an act of love.”- Maria Corina Machado 2025 Nobel Peace Prize winner
January 3, 2026 at 11:38 AM
“To strike Venezuela is an act of love.”- Maria Corina Machado 2025 Nobel Peace Prize winner
Reposted by Maud Sac 💢🍉
✨ En ce début d'année, le collectif voxEM vous souhaite le meilleur, le plus agréable et le plus juste possible.
voxEM est un collectif de malades d'encéphalomyélite myalgique et de proches, agissant en France.
Plus d'infos à notre sujet très bientôt, restez en ligne !
voxEM est un collectif de malades d'encéphalomyélite myalgique et de proches, agissant en France.
Plus d'infos à notre sujet très bientôt, restez en ligne !
January 2, 2026 at 3:59 PM
✨ En ce début d'année, le collectif voxEM vous souhaite le meilleur, le plus agréable et le plus juste possible.
voxEM est un collectif de malades d'encéphalomyélite myalgique et de proches, agissant en France.
Plus d'infos à notre sujet très bientôt, restez en ligne !
voxEM est un collectif de malades d'encéphalomyélite myalgique et de proches, agissant en France.
Plus d'infos à notre sujet très bientôt, restez en ligne !
Reposted by Maud Sac 💢🍉
Western (especially European) medicine is obsessed with “over-medicalisation”.
But, under-medicalisation kills. A lot.
We’ve normalised having to repeat serious symptoms to a doctor multiple times before anyone acts.
So who does this “over-medicalisation” narrative benefit?
But, under-medicalisation kills. A lot.
We’ve normalised having to repeat serious symptoms to a doctor multiple times before anyone acts.
So who does this “over-medicalisation” narrative benefit?
December 28, 2025 at 7:43 PM
Western (especially European) medicine is obsessed with “over-medicalisation”.
But, under-medicalisation kills. A lot.
We’ve normalised having to repeat serious symptoms to a doctor multiple times before anyone acts.
So who does this “over-medicalisation” narrative benefit?
But, under-medicalisation kills. A lot.
We’ve normalised having to repeat serious symptoms to a doctor multiple times before anyone acts.
So who does this “over-medicalisation” narrative benefit?
Reposted by Maud Sac 💢🍉
It’s nice to be reminded of the narrowing down and new clues that have been found this year.
mecfsscience.org/2025-looking...
mecfsscience.org/2025-looking...
2025: looking back on a year of ME/CFS research - ME/CFS Science
In 2025, scientists made a significant step towards understanding the pathophysiology of ME/CFS. It mayContinue reading2025: looking back on a year of ME/CFS research
mecfsscience.org
December 30, 2025 at 11:22 AM
It’s nice to be reminded of the narrowing down and new clues that have been found this year.
mecfsscience.org/2025-looking...
mecfsscience.org/2025-looking...
Reposted by Maud Sac 💢🍉
It drives me nuts when a terrible person dies, and we are all supposed to pretend they were great, like telling the truth is somehow uncouth.
Brigette Bardot was a truly despicable racist, homophobe, bigot, and lifelong supporter of fascists. Acknowledge her work, I guess, but don't celebrate her.
Brigette Bardot was a truly despicable racist, homophobe, bigot, and lifelong supporter of fascists. Acknowledge her work, I guess, but don't celebrate her.
December 28, 2025 at 4:55 PM
It drives me nuts when a terrible person dies, and we are all supposed to pretend they were great, like telling the truth is somehow uncouth.
Brigette Bardot was a truly despicable racist, homophobe, bigot, and lifelong supporter of fascists. Acknowledge her work, I guess, but don't celebrate her.
Brigette Bardot was a truly despicable racist, homophobe, bigot, and lifelong supporter of fascists. Acknowledge her work, I guess, but don't celebrate her.
Reposted by Maud Sac 💢🍉
#gaza 25.12.2025
"Il pleuvait autour de nous, et je tenais ma guitare en jouant doucement.
Puis mon père est venu me rejoindre, et ensemble nous avons joué cette mélodie.
Un moment simple, plein de chaleur, de musique et de pluie.
J'espère que vous […]
[Original post on mastodon.social]
"Il pleuvait autour de nous, et je tenais ma guitare en jouant doucement.
Puis mon père est venu me rejoindre, et ensemble nous avons joué cette mélodie.
Un moment simple, plein de chaleur, de musique et de pluie.
J'espère que vous […]
[Original post on mastodon.social]
December 25, 2025 at 8:43 PM
#gaza 25.12.2025
"Il pleuvait autour de nous, et je tenais ma guitare en jouant doucement.
Puis mon père est venu me rejoindre, et ensemble nous avons joué cette mélodie.
Un moment simple, plein de chaleur, de musique et de pluie.
J'espère que vous […]
[Original post on mastodon.social]
"Il pleuvait autour de nous, et je tenais ma guitare en jouant doucement.
Puis mon père est venu me rejoindre, et ensemble nous avons joué cette mélodie.
Un moment simple, plein de chaleur, de musique et de pluie.
J'espère que vous […]
[Original post on mastodon.social]
Reposted by Maud Sac 💢🍉
Toi tu ne trouves pas cette caricature raciste (sans guillemets), @liberation.fr?
December 25, 2025 at 10:19 AM
Toi tu ne trouves pas cette caricature raciste (sans guillemets), @liberation.fr?
Reposted by Maud Sac 💢🍉
Cette nuit, par prétexte ou sincèrement, le monde célèbre la naissance d’un enfant à Bethléem en Palestine, où 2025 ans plus tard on tue quotidiennement des enfants par la colonisation, la faim, le froid, les bombardements ou les exécutions. Cette nuit je pense à Hind Rajab et tous les autres.
December 24, 2025 at 11:46 PM
Cette nuit, par prétexte ou sincèrement, le monde célèbre la naissance d’un enfant à Bethléem en Palestine, où 2025 ans plus tard on tue quotidiennement des enfants par la colonisation, la faim, le froid, les bombardements ou les exécutions. Cette nuit je pense à Hind Rajab et tous les autres.
Reposted by Maud Sac 💢🍉
We have previously raised concerns about its chair, Simon Wessley in this article.
Simon Wessely’s history of discrediting sick and disabled people could be bad news for trans health research priorities.
Psychiatrist Simon Wessely has been appointed to chair the National Children and Young People’s Gender Dysphoria Research Oversight Board. TSN outline our concerns about this appointment.
transsafety.network
December 19, 2025 at 2:48 PM
We have previously raised concerns about its chair, Simon Wessley in this article.
Reposted by Maud Sac 💢🍉
Maeve was my daughter but she could have been anyone. Raised, educated, cared for by me - alone (not Murdoch's Times) but she is the Everyman (sic) of #ME.
No one, anywhere in the world, is protected from premature death from medical neglect.
The medical establishment was and remains wrong about ME.
No one, anywhere in the world, is protected from premature death from medical neglect.
The medical establishment was and remains wrong about ME.
December 20, 2025 at 11:02 PM
Maeve was my daughter but she could have been anyone. Raised, educated, cared for by me - alone (not Murdoch's Times) but she is the Everyman (sic) of #ME.
No one, anywhere in the world, is protected from premature death from medical neglect.
The medical establishment was and remains wrong about ME.
No one, anywhere in the world, is protected from premature death from medical neglect.
The medical establishment was and remains wrong about ME.
Reposted by Maud Sac 💢🍉
Devenir handi'e, partie 1 : coming in | À ta santé camarade ! #12
https://rebellyon.info/Devenir-handi-e-partie-1-coming-in-A-ta-33103
https://rebellyon.info/Devenir-handi-e-partie-1-coming-in-A-ta-33103
Devenir handi'e, partie 1 : coming in | À ta santé camarade ! #12
« À ta santé camarade ! » est une chronique des Canards Masquées. Cette douzième édition réfléchit à ce que devenir handicapé’e signifie sur le plan individuel, administratif et social. Alors (...)
rebellyon.info
December 12, 2025 at 7:11 AM
Devenir handi'e, partie 1 : coming in | À ta santé camarade ! #12
https://rebellyon.info/Devenir-handi-e-partie-1-coming-in-A-ta-33103
https://rebellyon.info/Devenir-handi-e-partie-1-coming-in-A-ta-33103
Reposted by Maud Sac 💢🍉
Cette époque cheloue où tout est antisémite sauf les saluts nazi
December 13, 2025 at 8:05 AM
Cette époque cheloue où tout est antisémite sauf les saluts nazi
Reposted by Maud Sac 💢🍉
December 8, 2025 at 5:10 PM
Reposted by Maud Sac 💢🍉
for a limited period of time, but also "destroys" it. But the more studies I have looked at that are supposed to "prove" this, the less I do believe it. These studies are often hyped up on social media in a clickbait-like manner without any commentary or context.
2/18
2/18
December 7, 2025 at 3:22 PM
for a limited period of time, but also "destroys" it. But the more studies I have looked at that are supposed to "prove" this, the less I do believe it. These studies are often hyped up on social media in a clickbait-like manner without any commentary or context.
2/18
2/18
Reposted by Maud Sac 💢🍉
There are plenty of good reasons to continue protecting yourself consistently against #Covid infections, including the danger of Long Covid and the increased risk of strokes. However, I am amazed by how many Covid cautious people are convinced that the virus not only weakens the immune system
1/18
1/18
December 7, 2025 at 3:22 PM
There are plenty of good reasons to continue protecting yourself consistently against #Covid infections, including the danger of Long Covid and the increased risk of strokes. However, I am amazed by how many Covid cautious people are convinced that the virus not only weakens the immune system
1/18
1/18
Reposted by Maud Sac 💢🍉
Et pour couronner le tout, si la lutte pour la deconjugalisation de l'AAH a été une des rares victorieuses de cette dernière décennie grâce à une union massive, l'avancée eugéniste que permettra la #LoiFinDeVie va en plus nous être presentée tout sourire comme une magnifique victoire transpartisane🤢
Et pour que le tableau soit complet, le sénat examinera bientôt une loi d'euthanasie pour offrir la mort plutôt que des aides et des soins.
"priorité du 2ème quinquennat Macron sur le volet sociétal" & soutenu par @franceinsoumisean.bsky.social @lesecologistes.fr 🤮
www.lemonde.fr/societe/arti...
"priorité du 2ème quinquennat Macron sur le volet sociétal" & soutenu par @franceinsoumisean.bsky.social @lesecologistes.fr 🤮
www.lemonde.fr/societe/arti...
December 7, 2025 at 5:45 PM
Et pour couronner le tout, si la lutte pour la deconjugalisation de l'AAH a été une des rares victorieuses de cette dernière décennie grâce à une union massive, l'avancée eugéniste que permettra la #LoiFinDeVie va en plus nous être presentée tout sourire comme une magnifique victoire transpartisane🤢
Reposted by Maud Sac 💢🍉
Pendant ce temps-là, Libé soutien l'exploitation de travailleurs handicapés par des ESAT, et on est même pas surpris. 😮💨
Avec les ouvriers de l’Esat mobilisés pour la Fête des lumières : «Je pourrai dire aux gens que c’est moi qui ai fait ça !»
Une quinzaine de personnes en situation de handicap ont été mobilisées pour la préparation minutieuse de l’événement, dont l’installation des filtres sur les lampadaires.
Une quinzaine de personnes en situation de handicap ont été mobilisées pour la préparation minutieuse de l’événement, dont l’installation des filtres sur les lampadaires.
Avec les ouvriers de l’Esat mobilisés pour la Fête des lumières : «Je pourrai dire aux gens que c’est moi qui ai fait ça !»
Une quinzaine de personnes en situation de handicap ont été mobilisées pour la préparation minutieuse de l’événement, dont l’installation des filtres sur les lampadaires.
www.liberation.fr
December 6, 2025 at 5:36 PM
Pendant ce temps-là, Libé soutien l'exploitation de travailleurs handicapés par des ESAT, et on est même pas surpris. 😮💨
Reposted by Maud Sac 💢🍉
Obvious cases of ME/CFS being labelled only as as Post-COVID is not only erasure, but also
harmful. The people affected miss out on some crucial PEM and severity specific info.
(Obviously, ME/CFS is rarely managed optimally by the medical system, but neither is long COVID!)
harmful. The people affected miss out on some crucial PEM and severity specific info.
(Obviously, ME/CFS is rarely managed optimally by the medical system, but neither is long COVID!)
Medscape: 'Secondary Infections and Long COVID in Kids: What Pediatricians Need to Know'
'...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..'
www.medscape.com/viewarticle/...
'...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..'
www.medscape.com/viewarticle/...
Long COVID in Kids: What Pediatricians Need to Know
New research suggests that children and teens who get COVID a second time face twice the risk for developing long COVID.
www.medscape.com
October 29, 2025 at 3:47 PM
Obvious cases of ME/CFS being labelled only as as Post-COVID is not only erasure, but also
harmful. The people affected miss out on some crucial PEM and severity specific info.
(Obviously, ME/CFS is rarely managed optimally by the medical system, but neither is long COVID!)
harmful. The people affected miss out on some crucial PEM and severity specific info.
(Obviously, ME/CFS is rarely managed optimally by the medical system, but neither is long COVID!)
Reposted by Maud Sac 💢🍉
This is Isla at age 8.
She died at age 18 with severe ME/CFS.
Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.
She died at age 18 with severe ME/CFS.
Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.
![More, more, more
You are meant to understand my illness but you all do is push, push, push. Nothing I do is ever good enough. I am proud and think you will be pleased with me as I have been going to school much more than before, but all you do is say I need to stay there longer, and if I feel ill I can’t [go] home early. I can’t get to sleep at night and you make me feel like it is my fault. You tell my parents to ignore me at night time, even when I am upset and feeling scared and lonely. Lucky for me they ignore you! I am so tired but you say I still have to get out of bed and walk even at the weekend after I have been at school all week. I don’t like coming to see you, it makes me worry what you are going to ask me to do next. My mum tells you I sometimes feel much worse but you tell us I just have to do more, more, more. You speak to my school and I worry they will be on your side and expect more of me too. I worry about what you are going to tell us to do next. I think you should care more about the children who come to see you and try to understand what they are going through.
From Isla aged 8](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:tbjkzimgulox2kwiykbhspfn/bafkreicns5bi5awyizdmale5oex7evjygihsoc7lzaop536t4fh4tunxna@jpeg)
July 31, 2025 at 12:40 PM
This is Isla at age 8.
She died at age 18 with severe ME/CFS.
Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.
She died at age 18 with severe ME/CFS.
Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.
Reposted by Maud Sac 💢🍉
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
#MEKills #HumanRights
July 31, 2025 at 6:45 AM
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
#MEKills #HumanRights