Astraldart @astraldart

26 year-old french girl disabled by #longcovid since dec 2021. Severely damaged by 3 pills of #fluoroquinolones in march 2022. Advocating online for #mecfs 🥄 Bed Joined March 2024

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xxx ROSE xxx @TanteRos

23 hours ago

Last night I had an experience that Google calls 'exploding head syndrome'. It's happened a few times. This time it sounded like a door had blown shut in the wind. It don't think it's an ME thing. Google tells me it's nothing to worry about, so I won't. But it is weird.

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Rhi @rhirhiarhii

3 days ago

Pls don’t forget I’m struggling too And I’ll keep having issues long term thanks to underfunding my disability needs. I also desperately need a food dehumidifier to prevent mould problems ($500 ish) and costs to help cover meds supplements, my $400 board and everything

Rhi @rhirhiarhii

a month ago

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Astraldart @astraldart

3 days ago

whole body is a mess, nerve damage, tendons damage, eye damage, ear damage, I hallucinated for 3 years straight, lost my sanity, became psychotic from antibiotics, akathisia, brain telling me weird shit, no sleep yet severe mecfs. I didn't know such suffering was possible #mecfs

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Astraldart @astraldart

3 days ago

fk this shit, I can't take any medicines because it further destroys my tendons that were damaged by antibiotics, but I also can't bear the nerve pain that I have on my whole body and makes me suicidal. I can't win with this. #longcovid #fqtoxicity

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Cakelin @thecakelin

2 weeks ago

Wore some earplugs while working with power tools today, because I am living in fear. Ears are actually a muscle that you need to strengthen with loud noises. A lot of people have hearing debt because they haven't heard loud enough noises.

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Juul @tiredjuul

2 weeks ago

long covid makes you do weird things two years ago I'd never imagined myself trying to order ensitrelvir from a factory in China

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Mike Malaise @mike_malaise

6 days ago

I’m bedbound, extremely severe. My 73yo father is verbally abusive, denies my condition, & threatens to stop helping with basic needs like emptying my pee bottle. I’m worried he’s declining. No emergency contact or care plan. I’m terrified of where I may end up. #LongCOVID #MECFS

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Stefan Arce @stefan_arce

6 days ago

I am one of the most severe cases of ME/CFS in the world, and I have gotten much worse. I will try to update my case little by little, with the small adrenaline I get from using my phone. Please share this thread across all my networks and help me spread it. Search on Google:…

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Astraldart @astraldart

6 days ago

2/medicines has reached great milestones but this has become too much. From a young age now you are given cough syrup that works on nmda receptors, anti nausea drugs that works as dopamine antagonist, antibiotics that block gaba..great cocktails for premature neurological disease

Juul @tiredjuul

3 weeks ago

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Astraldart @astraldart

6 days ago

I developed dystonia and parkinsonism from benzos. I'm also in support groups of people harmed by meds. The number of young ppl now having movement disorders from psych drugs, antibiotics, hormones are astonishing. It's not just pesticides, its overprescriptions in the last 30+y

Juul @tiredjuul

3 weeks ago

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Han 🖤 @spoonfulofhan

7 days ago

I can’t believe Kratom is being recommended in the chronic illness community again to vulnerable people that just want the sickness and pain to stop. Something being marketed to people as “natural” doesn’t mean that it is safe. PLEASE research before using this.

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Astraldart @astraldart

6 days ago

So, this is the third year my beloved friend invited me for a drink despite me telling them many times that I'm sick and can't move ???? Ehm people really think we're chilling in bed with a cold #mecfs #pwme

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Astraldart @astraldart

6 days ago

I can't tolerate pharma liquid diet somehow, synthetic vitamins do not agree with me. If I end up very severe no feeding tube for me. #mecfs #longcovid

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Astraldart @astraldart

6 days ago

My stomach is collapsing again. Having to resort to eating snails everyday to get maximum minerals and vitamins lol #mecfs #longcovid

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Astraldart @astraldart

a week ago

today is so bad I feel like fainting can't open eyes or talk omg #mecfs #longcovid

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Astraldart @astraldart

a week ago

My immune system is crashing down : low lymphocytes, low neutrophils, low C3 and C4 #longcovid #mecfs

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Clare @ClrBlwrs

a week ago

Mitochondria only come from your mother, so I want to know what went wrong My great grandmother born 1901, Durham miner's daughter, had 11 children and worked really hard, was often the sole earner, lived to 92 (when I was a teenager).

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Katiana. @katiamek

2 weeks ago

giftster.com/gift/public/Y8… I’ve created a wishlist for me to have but also if anyone doesn’t want to donate money but buy something instead. Again thank you to everyone who has supported me/ is supporting me. #pwme #mecfs #severeme #longcovid

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Tom Molmans, MD @Molbaas

3 weeks ago

According to @MECentraal, doctors are withholding Sanne, a 38 yo ME patient with gastroparesis, the only way she can still be fed: total parenteral nutrition (TPN). 'Cause 'we don't do that in ME'. Her Q, 'so you're leaving me to die?', remains unanswered. @TimesONeill

ME Centraal @MECentraal

3 weeks ago

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Lucy 🐾 @WildlifeLucy

a week ago

Hello friends #pwME #pwLC, I'm trying to find a sustainable way to have my hair washed. Does anyone have a nifty hack to lie back & have their hair washed over the bath? I'm thinking a cushioned bench with some sort of back support 👇. I need to be able to just lie there 😅#MECFS