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
@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.
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 😍
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.
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
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
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).
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
😵💫 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
@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.
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
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
🚨🚨🚨 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.
🔹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