1) I remember at the beginning of having ME, watching a documentary about (very) #severeME, being moderately Ill felt so lucky not having to live in the dark as they did. Hidden away from society. 15 years later I ended up being one of them. That's why we urgently need better
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Perfect résumé of the situation of #severeME (and any ME) patients and their relatives in nearly every country worldwide.
Please read and share.
#PleaseHelpSevereME
#PleaseHelpUs
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Since our daughter became very severely ill, I SO wish we could take her to the hospital, entrust her to specialists for her disease, and know she would receive state-of-the-art medical care. But because Mila suffers from very severe #mecfs, we do not have this option.
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Liebe Freunde, liebe #MECFS / #LongCovid Bubble!
Hier nun der zweite Trailer zu unserer Dokumentation
"Die Stunden und die Ewigkeit"
Die liebe u. ihre süße Tochter /1
youtube.com/watch?v=L-Ctoe
#notrecovered #cryforME #severeME #pwME #pwLC #PoTS #MillionsMissing
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One of the millions of things I wish temporarily able-bodied people understood about living w/ #MECFS is that I do not fear death. I fear worsening symptoms and developing very severe ME. And any infection is a highly likely risk of me becoming bedbound again & tube-fed
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This illness is so traumatizing. It feels like being a prisoner in your own body, with a cruel prison guard that punishes you for every movement, activity, or just for no reason at all. I live in fear of what it will do to me next.
#SevereME #LongCovid
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3) people with #LongCovid that will become more severely ill. Care for #pwME and LC is mostly based on those with mild/moderate forms of the disease but where's the care for those with (very) #severeME & LC? Is medical world prepared to deal with the influx of these patients?
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2) treatments and care for both #longCOVID & #pwME. The lack of urgency seems to stem from the fact that many health care providers are not familiar with #severeME as we're not able to come to any doctor's appointments or clinics but we do exist and we will see the an increase of
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I'm a bit in a treatment, or seeking help from a health care provider, block. There have been so many disappointments that I often don't see the point of trying. Most have no idea what severe ME entails & since I don't tolerate anything there's not much they can do.
#severeME
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Add your famous (mainly) bedbound people #POTS #SevereME #MEawareness Elizabeth Barrett Browning. Florence Nightingale. Frida Kahlo.
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This is true even when: I’m smiling, looking happy, enjoying someone’s company, being chatty, laughing, wearing make-up and/or a pretty outfit.
I can look fine. I can look well. I never feel well.
#PwME #MyalgicEncephalomyelitis #SevereME #NEISvoid #ChronicIllness #Disability
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Quick update re foundation: TEMPI foundation (tempi-stiftung.at) will establish a yearly grant worth 100k USD for #mecfs research. We plan to be open for applications by 2023. My family finances the budget for this specific grant for the next five years, guaranteed./1
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1) I remember at the beginning of having ME, watching a documentary about (very) #severeME, being moderately Ill felt so lucky not having to live in the dark as they did. Hidden away from society. 15 years later I ended up being one of them. That's why we urgently need better
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Hi #pwME does anyone with severe/very severe ME recognise moments/periods of extreme dizziness/vertigo? My GP thinks it’s BPPV (benign paroxismal positional vertigo) but I was wondering if it could also be a #POTS related thing or maybe #MCAS?
#MedTwitter #MEcfs
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6 years ago . Pre #MyalgicEncephalomyelitis #MECFS
3 years ago bedridden with severe ME sleeping 22+ hours a day.
Now with mild/moderate ME able to have some fun but always with time in bed, in pain, fatigued with brain fog as payback.
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I appear to be crashing badly.
Can anyone suggest 1. Good tasting 2. Ready to drink 3. Dairy & soy free 4. Protein/meal replacement drinks I can grab & open from bed?
I’ve developed a bad cow’s milk & soy allergy so not negotiable.
#NEISvoid
#MECFS
#SevereME
#Gastroparesis
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I miss being a person who didn’t know this type of physical suffering was possible. People with ME have to survive experiences that are on an entirely different number line of suffering than what a healthy person experiences.
#SevereME #LongCovid
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