Discover and read the best of Twitter Threads about #SevereMEDay
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Today is #SevereMEDay. People with severe ME/CFS live out their lives bedbound in a darkened room, with headphones, seeing no one, because even passive sensory input depletes them of energy. Many with #LongCovid will end up here. It is one of the worst illnesses that exists. 1/
Right now as I’m resting my brain in the dark and quiet, I’m thinking of everyone who has to spend all of their time like this, in a place absent from the world, and sending you love. 2/ 
1) For #severeMEday I've decided to post a picture of me in the light. I've been doing so the last couple of months. Since I've moved to my new place and crash less because the noise of my neighbours, I can allow myself to do things like quickly take a picture in
2) the light right before I'm about to get up without it making me too ill.
While these pictures seem like I'm doing rather well, these are just snap shots, and the rest of the day I still live in a darkened home, with earplugs, silent, no visitors & with some exceptions no
While these pictures seem like I'm doing rather well, these are just snap shots, and the rest of the day I still live in a darkened home, with earplugs, silent, no visitors & with some exceptions no
3) music, video or any other entertainment.
While I'm very happy with being a bit more stable because of my living situation, I know that with ME it's like switching some unknown switch and you'll relapse for no particular reason. Maybe that moment will be next week. So I'm
While I'm very happy with being a bit more stable because of my living situation, I know that with ME it's like switching some unknown switch and you'll relapse for no particular reason. Maybe that moment will be next week. So I'm
Heute ist #SevereMEDay.🧵
Weltweit wird an diesem Tag an schwer und sehr schwer #MECFS Betroffene erinnert, die ans Haus oder Bett gefesselt und für die Gesellschaft unsichtbar geworden sind.
1/x
Weltweit wird an diesem Tag an schwer und sehr schwer #MECFS Betroffene erinnert, die ans Haus oder Bett gefesselt und für die Gesellschaft unsichtbar geworden sind.
1/x
Sie sind komplett aus dem Leben verschwunden und vegetieren isoliert in Dunkelheit und Stille. Ungesehen und ungehört.
Der 8. August wurde zu Ehren von Sophia Mirzas Geburtstag gewählt, welche an schwerer ME litt.
2/x
Der 8. August wurde zu Ehren von Sophia Mirzas Geburtstag gewählt, welche an schwerer ME litt.
2/x
Sie war eine junge britische Künstlerin, die im Jahr 2003 gewaltsam in die Psychiatrie eingewiesen wurde. Ihr Körper erholte sich nie wieder von den Strapazen der Einweisung. Am 15. November 2005 verstarb Sophia im Alter von 32 Jahren an den Folgen der Krankheit.
3/x
3/x
#severeMEDay
50 years ago, my mother became ill with severe #mecfs. She was sent from one physician to the next and so heavily gaslighted that she stopped seeing medical doctors altogether. As a child, I only knew her bedridden in a dark room.
1/16
50 years ago, my mother became ill with severe #mecfs. She was sent from one physician to the next and so heavily gaslighted that she stopped seeing medical doctors altogether. As a child, I only knew her bedridden in a dark room.
1/16
My mother is one of the strongest people I know. As a young nurse, she set up a mobile clinic in a remote region in Africa with no access to medical care. Back in Europe, seriously ill herself with no treatment, she felt she could just as well have stayed in rural Africa.
2/16
2/16
Three years ago, one of my twin daughters, Mila (then 16), became ill with #mecfs. Since Nov. 2021, she has been even more severe than my mother has ever been, fully bedridden in a dark room, too weak to talk or be talked to, needing the little energy she has to just survive.
3/
3/
The strength it takes to live with #SevereME for decades defies understanding
Let alone when it begins in childhood, preemptively deleting the opportunities and joys of a normal life
Left having to fight for yourself in the midst of debilitating illness with little to no help
Let alone when it begins in childhood, preemptively deleting the opportunities and joys of a normal life
Left having to fight for yourself in the midst of debilitating illness with little to no help
And then most healthy people dare to say #severeME is fake/malingering or too much complaining, then to deny it or give BS advice?
Please, feel free to get in the shoes of a #pwME for a few years. The #millionsmissing have left plenty of them on the roadside for you to try.
Please, feel free to get in the shoes of a #pwME for a few years. The #millionsmissing have left plenty of them on the roadside for you to try.
On the #SevereME menu: at a bare minimum, a dozen symptoms that leave you bedbound 24/7
Unable to tolerate light, sound, touch, smells, to think, speak and move
Requiring assistance to eat, shower, use the toilet
The smallest thing you do flares your symptoms for days or weeks
Unable to tolerate light, sound, touch, smells, to think, speak and move
Requiring assistance to eat, shower, use the toilet
The smallest thing you do flares your symptoms for days or weeks
Hey @guardian @guardianscience This would be a really interesting dialogue to continue if you opened it up to the majority of researchers who don’t support the PACE trial and have good relationships with patients, instead of just giving Sharpe a platform. theguardian.com/science/audio/…
There are so many flaws in Sharpe’s argument that I won’t be able to cover them all myself (due to ME), but for one, his attempt to differentiate between ME and CFS to justify their work when he knows full well that in practice it is all considered the same. @guardianscience
This means that if you are anywhere on the spectrum including #SevereME (see #SevereMEday yesterday) with extreme exercise intolerance, then you can be put forward for CBT/GET, and actually many Severe patients were formerly moderate before these “treatments” @guardianscience
