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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Sylvia Iversen is a severe ME-patient, who also suffers from cancer and end stage heart failure. She's now spent her limited time to create an impressive overview of biomedical research on #MECFS. 💙
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Several studies show that #MECFS is one of the most debilitating chronic illnesses. Many patients have symptoms around the clock and have lost many of the things that really matter: social network, career, leisure activities etc. Your support may mean the world. #MEAwarenessHour
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Conversation with my preschooler:
"Mommy, I want to meet the Tooth Fairy."
Me: "Why?"
"Because then she'd give me a wish."
Me: "What would your wish be?"
"That you'd not get COVID. That you'd not be tired all the time. That you'd have lots of energy."
💔 #LongCovid #MECFS
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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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I'm ready to try any experimental treatment for #MECFS
I would film my journey on youtube so you'd be updated about what is out there and might work.
Of course under supervision of a doc
(If I get the money for it)
Desperation coupled with curiosity
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I don’t understand why every #MECFS & #LongCovid patient presenting with the classic neuro-immune & vascular symptoms, aren’t immediately sent for screening for:
- POTS
- EDS/hEDS
- EBV & HHV reactivation
- Microclots & hyperactivated platelets
- … what else did I miss?
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Proponents of the #PACEtrial are surprised that the critics don’t give up and annoyed that they must spend so much time defending the trial. It’s their choice to keep defending the indefensible. The criticism won’t go away because the flaws of the trial won’t go away. #MECFS
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Erinnerungen an mein Leben vor #MEcfs sind schmerzhaft, vor allem weil ich in den Jahren vor dem Ausbruch noch so viel erlebt habe und das alles vielleicht nie wieder sehen und tun kann. Und das nur weil meine Krankheit geleugnet wird statt erforscht.
#MEAwarenessHour
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Once again so even single cell pond life can hear: THERE IS NOT ONE SINGLE EFFECTIVE TREATMENT FOR #LongCovid & #MEcfs!!! Those of us with ME/CFS have been at this for DECADES! Get it into your heads: conventional OR alternative, NONE OF IT FUCKING WORKS! We NEED URGENT research
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This is my annual reminder that chronic illness gets worse in the fall. Every year.
Do you have #LongCOVID? Do you have #MECFS?
Batten down the hatches and remember: this too shall pass. (1/2)
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Für die Welt bin ich ein niemand, aber für meine Kinder alles.
Bitte helft.
#severemecfs #mecfs #NotRecovered
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Ein "stiller Killer" - COVID-19 löst nachweislich Entzündungen im Gehirn aus
Forschungsarbeiten unter der Leitung der Universität von Queensland haben ergeben, dass #COVID19 im Gehirn die gleiche Entzündungsreaktion auslöst wie die Parkinson Krankheit.
#LongCovid #Corona #MECFS
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