Partie 1 : Réduction des risques, Soin communautaire, Lutte anti-validiste (« Disability Justice »), antifascisme
https://paris-luttes.info/pour-un-antifascisme-antivalidiste-18188
Nous réaffirmons le besoin de porter un antifascisme antivalidiste, et de lutter contre toutes les formes de validisme et d’eugénisme ; qu’il vienne des fascistes et fascisateurs, de la gauche institutionnelle, ou de nos propres camarades. (et ça parle de l’ARRA)
Behind closed doors in the dark, Margot, @StillViv, @DaschaEliza, Ilse, @AnilvanderZee , Lara talk about life with severe ME. @LouCorsius talks about Céline.
@mecfs
Welcome to the PwMElympics
People with myalgic encephalomyelitis (PwME) perform daily exploits.
Decathlon: working outside home
Climbing: going upstairs
Marathon: walking
Relay Race: taking part to a conversation
Gymnastics: turning in bed
Obstacle course: getting a disability pension https://www.youtube.com/watch?v=zTXaxN1QObA
You can also print the document (8 pages) to bring to your next appointment. I've given it to several doctors - and so has my husband, who does not have ME/CFS!
Sharing information about the Mayo ME/CFS document (Diagnosis and Management of ME/CFS) - and the associated CME (Continuing Medical Education) - is a great way to immediately improve patient care for people with ME/CFS.
Remember, roughly half of Long Covid patients meet the ME/CFS diagnostic criteria.
Need help crafting an email to send to your doctor? Here's a template:
It’s #MEAwarenessDay 💙 I got sick with a virus the summer of 2015 and had to quit everything. I’m grateful I was able to find ways to make art again, but I’m still very limited in what I can manage. Here’s some ways you can enjoy my art & help the #MECFS community
Today is ME awareness day. My amazing wife Katie has written up what it is like living with ME and shared her story over on Instagram. If you can, please take the time to read it through and find out more about what you can do to help people living with ME:
@mecfs
This is an entirely English-translated version of the first element of the ME awareness campaign made by CMGouin and AQEM, the ME association of Quebec.
You know Olympics and Paralympics, but do you know there are also PwMElympics.
Decathlon: working outside home
Design and illustration by CMGouin cmgouin.com
aqem.ca
You can find the other elements of the campaign at @cmgouin (though they're not entirely translated) #MEcfs#May12#MEAwarenessDay#pwME#OlympicGames#ParalympicGames
I realized that once again I completely forgot to spell out the abbreviations ME and ME/CFS.
So, for folks who have never heard of this illness, or who may mistakenly know it as "chronic fatigue" (which is a symptom of many illnesses and is not the same as an ME or ME/CFS diagnosis), here's a link from the #MEAction website:
"From May 6 to 12, CDC will light the Atlanta Visitor Center in blue to recognize ME/CFS International Awareness Day. We are honored to have people with ME/CFS and their caregivers join us to kick off this event."
"We are excited to announce the kick-off of #MillionsMissing 2024 – our ongoing campaign to Teach ME and Treat ME by educating medical providers across our nation’s hospital systems and medical schools about myalgic encephalomyelitis (ME)."
I have ME (myalgic encephalomyelitis) although my personal case is moderate… today is a bed bound day.
My heart goes out to those who live day in and day out with a more severe form of this illness than I have. I realize my privilege, even if from my perspective it feels like I’ve lost 70% of my life living with this illness.
I share because awareness matters.
Doctors dismiss us, mistreat us, cause harm.
We need your solidarity. #pwME
Die schwere neuroimmunologische Erkrankung #MECFS ist noch kaum erforscht. Millionen von Menschen, die weltweit darunter leiden, fehlt es an angemessener Hilfe. Es gibt keine zugelassenen Therapien oder Medikamente. Das muss sich ändern! #MEAwarenessDayhttps://youtu.be/wj_ULCmY98g
I don’t really know what to say, except… let us speak. Listen without judgement or comparisons. Let us tell our stories. Let us be sad. Let us be mad. Let us grieve who we were before this happened to our bodies.
And please, don’t kick #pwME to the curb because they are different now. Don’t distance yourself from us. We’re still ‘us’ … it’s just our bodies that have forsaken us.