338 Photos and videos
Satcha EM retweeted
Jun 11
racism is a sign of low intelligence
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Satcha EM retweeted
🖤#RIP Kim Linke *6.10.2000 - †10.6.2026🖤
Die ehemalige Volleyballerin Kim, die früher ein Sportinternat besuchte, ertrug ihr #MECFS Leid nicht mehr. Ihr bleibt als einziger Ausweg der Tod, weil Hilfe wie immer verweigert wird.💔
TV Bericht über Kim:
ndr.de/nachrichten/niedersac…
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Satcha EM retweeted
Jun 11
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Satcha EM retweeted
Jun 6
Le RN ils ont trois mairies ils essaient déjà d'empêcher les femmes d'avorter.
⚡️🇫🇷FLASH -La municipalité #RN de #Carpentras coupe les vivres au Planning familial, qui défend le droit à la contraception, à l’avortement et à l’éducation à la sexualité. Fervent catholique, le maire Hervé de Lépineau a comparé l’avortement aux « crimes de Daesh » en 2020. (LP)
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Satcha EM retweeted
Being a carer for a disabled person is incredibly hard, but there is a world of a difference between carers who think it’s hard because the disabled person is a burden and those who think it’s hard because the state has abandoned disabled people
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Satcha EM retweeted
11 Jun 2025
On est combien à détester le Rassemblement National dans ce pays ? Retweetez un peu, pour voir. 😊
11 Jun 2025
On est combien à détester la France Insoumise dans ce pays ? Retweetez un peu, pour voir. 😊
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Satcha EM retweeted
3️⃣ DAYS TO GO.
🦸♀️More signatures are coming in - today's running total is 1123!!!
Can we reach 1250 or even 1500?!
If you haven't signed yet - now's the time.
🖇️✍️👇
forms.gle/V1XCBMTb4B6ALHm9A
Amazing to see the community come together 😍
ALT Open letter to Royal College of Psychiatrists
🩵On #MEAwarenessDay we are sending an open letter to @rcpsych calling for alignment with current evidence.
Supported by 20 organisations. 35 advocates, clinicians & academics!
In democratic spirit we are offering a public sign-on opportunity 🔗👇️
#RCPsychIC #Garner
ALT A letter from Long Covid Advocacy to the Royal College of Psychiatrists and President Elect Prof Subodh Dave discusses integrating patient experience into ME care and highlights concerns about psychiatric-led approaches. #mecfs #meawareness #RCPsychIC #pwME
ALT A letter from Long Covid Advocacy to the Royal College of Psychiatrists and President Elect Prof Subodh Dave discusses integrating patient experience into ME care and highlights concerns about psychiatric-led approaches.
ALT A letter from Long Covid Advocacy to the Royal College of Psychiatrists and President Elect Prof Subodh Dave discusses integrating patient experience into ME care and highlights concerns about psychiatric-led approaches.
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Pdt le confinement, les malades d'EM alité·e en permanence dans la pénombre n'ont senti aucune différence. Et guess what ? Cette maladie chronique très invalidante est majoritairement déclenchée par UN VIRUS. Ça, c'est de la "cassure du lien social", et c'est à vie, pas 40 jours.
je me demande pourquoi autant de militant•es antivalidisme n’intègrent pas du tout la question de la cassure du lien social qu’implique un confinement
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Satcha EM retweeted
May 8
Lancement du site web du collectif voxEM, collectif que vous pouvez suivre sur bsky.app/profile/voxem.bsky.… !
Nous avons voulu créer un site ergonomique, accessible et régulièrement actualisé, utile aux #paEM francophones et à leurs proches.
voxem.fr
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Satcha EM retweeted
Wrote that few days before my crash. Noticed that it's today. Will probably be my last post in a while as this crash is the worst I've ever had. Thanks everyone for the kind messages under my last few posts. Take care 🫶 :
One year ago I took my last shower. I don't even care anymore, but it's a reminder of all the things I stopped thinking it would come back later after intense pacing. Things like going outside, playing video games, watching video content, showering, sitting up, eating more than 10 foods etc. All those things I once stopped thinking "I'll do it again in a few weeks when PEM is gone". But PEM never went away. And abilities never came back. Now I'm lying there, dirty, weak, unable to do anything, thinking of what I might have been able to do to prevent it. Such an awful illness #MECFS
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Un variant délétère du gène de la butyrophiline BTN2A1, impliquée ds la reconnaissance de certains antigènes par les lymphocytes T γδ, a été retrouvé chez un (petit) nb de patients EM/CFS.
Des variants de ce gène sont déjà associés à un groupe de maladies auto-immunes (lupus).
1) An analysis of rare DNA variants by AstraZeneca using the UK Biobank showed that people who self-reported having ME/CFS, had more rare DNA variants that disrupted the gene BTN2A1.
This gene also came up in the common DNA variants analysed by DecodeME.
ALT Results of Astrazeneca's phewas portal highlighting BTN2A1 as a relevant gene in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
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Satcha EM retweeted
Apr 6
CQFD: Encéphalomyélite myalgique : une lutte à bout de force
Article about raising ME/CFS awareness, related to the February 7 Marseille rally held by the @voxem collective.
cqfd-journal.org/Encephalomy…
Google translation
cqfd--journal-org.translate.…
#mecfs #pwme
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Satcha EM retweeted
Mar 3
😵💫 Connaissez-vous l'encéphalomyélite myalgique ?
Cette maladie généralement post-infectieuse, parfois résumée en "fatigue chronique", a explosé depuis le Covid.
"Je n’avais plus aucun espoir, mais je tiens pour mon fils."
Un fil ⤵️ @le_Parisien
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leparisien.fr/societe/sante/…
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Yes. I’ve had ME, often severe, for 41 years. It has stolen my whole adult life. In the last 4 years I’ve had cancer x2. The care, support, sympathy I’ve had for the latter is astounding compared to the former despite the ME being much more debilitating.
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ME lobby be like:
New graph (paper in following tweet) shows that ME receives about 1% of the amount proportionate to disease burden, LC 14% and hepatitis C 51000%.
General trend: common diseases (dark green) that affect women more (red) tend to be underfunded
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Satcha EM retweeted
Do you have ME/CFS and/or HSD & gastroparesis, and how do they relate to each other in your case?
Please feel free to share more details in the replies (timing, onset order, triggers, etc.). The poll format limits me to 4 options and 25 characters, so I’m keeping it simple here
60%
MECFS 1, gastroparesis 2
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Gastroparesis 1,MECFS 2
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EDS/HSD 1,gastroparesis 2
0%
Gastroparesis 1,EDS/HSD 2
5 votes • Final results
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Satcha EM retweeted
🚨🚨🚨 The chronic illness space on this platform is deteriorating rapidly. A fringe group of so-called physicians and academics are espousing psychosomatic narratives around ME/CFS, Long COVID, and MCAS…processes rooted in biology that are ravaging millions.
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Satcha EM retweeted
🔹L'EM n'est pas un TNF : positionnement de l'AQEM🔹
Dans la foulée de la conversation actuelle au sujet de l’encéphalomyélite myalgique, l’AQEM souhaite prendre la parole publiquement.
👉 tinyurl.com/AQEMSFC
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Satcha EM retweeted
Mar 29
I have very severe #MECFS #LongCOVID. My dad is my full-time caretaker and turning 75, and I don’t have other family support. I’m worried about emergencies, especially since I can’t tolerate a hospital or nursing home. I need to figure out how to survive long term. Any ideas?
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