Satcha EM

Encéphalomyélite Myalgique #MEMafia #MECFS 👩🏽‍🦼🔈

[elle carnitine 🍉 @elle_carnitine]

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

[Satcha EM @SatchaEM]

@le_Parisien @wargonm Pourquoi accorder un papier sur cet individu et à ce sujet ? Tant de personnes ou de causes mériteraient de la visibilité...
Ce médecin arrogant tweete en permanence (ce qui est louche) et est toujours agressif et insultant, que ça soit avec des LFI ou non.

[Boulet De Canon Nucléaire 🇫🇷 @AudeJavel79]

On est combien à détester le Rassemblement National dans ce pays ? Retweetez un peu, pour voir. 😊

[Long Covid Advocacy 💙 @LongCovidAdvoc]

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.
🖇️✍️👇
https://t.co/sCm0W3zXcZ

Amazing to see the community come together 😍

[Satcha EM @SatchaEM]

@Drsikorav Chacun de vos tweets m'éloigne un peu plus chaque jour de l'idée de consulter un psychiatre un peu jou.

[Satcha EM @SatchaEM]

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.

[banana, petsi bitabe 🐍 @veryrarebanana]

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

[Maud Sac 💢 @papillyon]

Lancement du site web du collectif voxEM, collectif que vous pouvez suivre sur https://t.co/msWwrObLi3 !

Nous avons voulu créer un site ergonomique, accessible et régulièrement actualisé, utile aux #paEM francophones et à leurs proches.

https://t.co/Pm00h0wSB6

[Antoine 🇫🇷 V.Severe MECFS @AntoineMECFS]

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

[Indy🔻#BLM @indy_yet]

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).

[Tom Kindlon @TomKindlon]

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.

https://t.co/W0ZlmER00n

Google translation
https://t.co/4l3uu4yOE0

#mecfs #pwme

[Nicolas Berrod @nicolasberrod]

😵‍💫 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

1/10

https://t.co/zQREOwK2W1

[Satcha EM @SatchaEM]

@FredericLefevre @BallyBagayoko "La juive Ruth Elkrief", mais ça va pas non ??

[Satcha EM @SatchaEM]

@ValeBodi @AntoineMECFS @CyruxiME I've had some recent news about Cyrus and his condition has improved significantly 🙏🏽

[Aisoo @4ajw3]

@1goodtern 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.

[Satcha EM @SatchaEM]

ME lobby be like:

[elle carnitine 🍉 @elle_carnitine]

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

[fereshteh jahanbani @fereshtehjahan1]

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

[Satcha EM @SatchaEM]

@ECapdexai @manolito856701 Quoi ??

[Michael R Scoma MD @DrMichaelScoma]

🚨🚨🚨 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.

[josi @joskee_josi]

🥹🥹
#tsgm05

[AQEM - Association québécoise de l'EM @AQEM_SFC]

🔹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.

👉 https://t.co/ikbHgZEFSy