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Posts tagged #Millionsmissing

Long COVID by the numbers:

400 million people affected worldwide
200+ documented symptoms
10–26% of COVID survivors develop it
0 FDA-approved treatments
6 years and counting

Read that last one again.

#LongCOVID #LongCOVIDAwareness #MillionsMissing

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700–1000 Personen demonstrieren vor dem Parlament in #Wien anlässlich des Long-Covid-Awareness-Tags mit MUT für ein besseres Gesundheitssystem, Versorgung und Anerkennung für alle Betroffenen von #Long Covid, #MECFS oder anderen #PAIS.
#mecfs #longcovid #postcovid #millionsmissing

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#LongCovidAwarenessDay
#millionsmissing

I was a teacher with a rich and active life. Now, thanks to #LongCovid, my days look like this:

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Det er på tide å si farvel til ME-diagnosen KRONIKK: ME-diagnosen skader mer enn den hjelper. I dagens debatt fremstilles ME som en klart avgrenset sykdom. Det er den ikke, skriver innsenderen.

Ja, da er fru Landmark igang igjen.
#ME #pwME #millionsmissing #actionforME #MyalgicE

www.forskersonen.no/kronikk-me-m...

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A post for Long-Covid Awareness Day.

www.facebook.com/100061511663...

#LongCovidawaressday #LongCovid #PAIS #IACI #pwme #millionsmissing

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279 million people: Andrew Gifford on Glass

279 million people - from my ME/CFS photo project

glass.photo/andrewgiffor...

ALT: Colour photo of a rotund green-blue-grey pumpkin on a counter top, looking a little like a planet

#Photography #MECFS #pwME #LongCovid #MillionsMissing #LongCovidAwarenessDay

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Today is my coronaversarry. Six years straight of being sick with Covid/long Covid.

Terrible irony to be sick again for it

Just trying to keep breathing

#Covid
#LongCovid
#FirstWave
#NotRecovered
#MillionsMissing
#ME
#CFS
#PASC
#POTS

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#MyalgicEncephalomyelitis punishes me for being #human. I was curious and stubborn and intelligent and caring, but I'm not allowed to be that person anymore. I have to choose not to think too hard, or this #illness will choose that for me.
#severeME #millionsmissing #spoonie

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A Failure to Convalesce An interminable struggle to put on a jumper.

6 years ago today, Covid-19 was officially declared a pandemic by the WHO. Now, most people have returned to normal. But there are still #millionsmissing with #longCOVID whose lives have been capsized. I wrote an article about it: the-fence.com/a-failure-to... for @thefence.bsky.social

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It's very saddening to read this news. Condolences to Bob's family, friends and colleagues. A great loss to the entire ME community. 💙

#mecfs #MillionsMissing #PwME #chronicillness #disability

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Wir freuen uns, gemeinsam mit euch wieder ein Zeichen zu setzen:
📍Sa, 09.05.2026 (ACHTUNG: neues Datum!)
📍Platz der Menschenrechte, Wien (ACHTUNG: neue
Location!)

Alle weiteren Details folgen bald auf allen unseren
Kanälen. Stay tuned!

#unversorgtseit1969
#MillionsMissing
2/2

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"50 reasons to mask"

#maskup #covid #flu #measles #healthcare #disability #mecfs #chronicillness #millionsmissing

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Screenshot from quella_the_dizzy_octopus on Instagram. Screenshot reads "Hi all! Nevra is currently in hospital. She is very ill right now so it is excellent she is getting medical attention. However, her GFM donations have stalled and she needs funds to pay for her hospital stay. A clean private room that protects her from infection and MCAS triggers is about 260 GBP/day. Nevra also does not have funds to pay for rent. It is essential we fundraise for this so she can recover in a safe place after being discharged. Please screenshot and share with her GFM links on as many platforms as possible. This is an emergency situation."

Screenshot from quella_the_dizzy_octopus on Instagram. Screenshot reads "Hi all! Nevra is currently in hospital. She is very ill right now so it is excellent she is getting medical attention. However, her GFM donations have stalled and she needs funds to pay for her hospital stay. A clean private room that protects her from infection and MCAS triggers is about 260 GBP/day. Nevra also does not have funds to pay for rent. It is essential we fundraise for this so she can recover in a safe place after being discharged. Please screenshot and share with her GFM links on as many platforms as possible. This is an emergency situation."

🚨 Nevra's situation is urgent. She can't afford both rent and hospital bills. 🚨

Please donate if you can, and share this post to spread the word.
PayPal: paypal.me/SaveLizNevra
GoFundMe: gofundme.com/f/save-nevra

#pwME #SevereME #MyalgicEncephalomyelitis #MillionsMissing #mecfs

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Wurde wieder reich beschenkt am Wochenende: Tulpen vom Besten 🌷, Essen für 4 Tage von Mama und Schwiegermama plus selbstgemachter Erdbeerkuchen. 🤰🏼🍓🍰 So geht Entlastung bei #MECFS ! Bin so dankbar dafür! ❤️

#learnaboutme #longcovid #millionsmissing #Familylove #Blessed

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Zeichnender Artist:
@pehpunkt.bsky.social
Bringt sensationell die Welt / das Leben von vielen mit MECFS z.B. nach Covid auf den Punkt.
Schwer krank ohne jede Aussicht auf ärztliche Hilfe 2026 mitten in Europa.
#MillionsMissing

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#pwME #SevereME #MyalgicEncephalomyelitis #MillionsMissing #mecfs

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“To The Caterpillar” by Trish Loehrer is included in the amazing Pillow Writers’ 2nd Anthology. Both anthologies are available and your purchase helps support MEAction!

Trish describes herself as one of the #MillionsMissing & dedicated this poem to her son who is also one of the #MillionsMissing.

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My coronaversarry is next Friday.

Six years straight of being sick & isolated

I’m lucky to be alive but I also don’t know if I’d call this living: erased from my own life, left to rot

Entombed in my room
While the world looks away

#LongCovid
#FirstWave
#NotRecovered
#MillionsMissing

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Screenshot from Nevra's instagram reads 
"🚨 £400 match funding alert!🚨 
All donations this month will be DOUBLED until £400 is reached. £10 becomes £20. £25 becomes £50. Let's unlock the full £800 together!"

Screenshot from Nevra's instagram reads "🚨 £400 match funding alert!🚨 All donations this month will be DOUBLED until £400 is reached. £10 becomes £20. £25 becomes £50. Let's unlock the full £800 together!"

🚨 £400 match funding alert!🚨
All donations this month will be DOUBLED until £400 is reached. £10 becomes £20. £25 becomes £50. Let's unlock the full £800 together!

Donate/share: paypal.me/SaveLizNevra & gofundme.com/f/save-nevra

#VerySevereME #pain #food #water #pwME #MillionsMissing #MECFS

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Drive to boost awareness of early signs of brain inflammation Charity Encephalitis International launch awareness campaign following the death of Mia Lucas, 12.

www.bbc.co.uk/news/article...

#ChronicFatigueSyndrome #MyalgicEncephalomyelitis #longhaulers #MEcfs #MyE #CFS #ME #pwME #Fibromyalgia #fibromyalgie #millionsmissing #LongCovid

#BeAllYouCanBe

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Graphic is a screenshot of an Instagram post that reads "Can't eat. Can't drink. Very severe ME. Keeps leading to infection. If we don't raise funs. I'm done for. It's goodbye from this Pakistani pwME. I have no words. All we know is that I have a compression. We need fun.ds ASAP in the next one day."

Graphic is a screenshot of an Instagram post that reads "Can't eat. Can't drink. Very severe ME. Keeps leading to infection. If we don't raise funs. I'm done for. It's goodbye from this Pakistani pwME. I have no words. All we know is that I have a compression. We need fun.ds ASAP in the next one day."

🚨 Nevra's situation is urgent. She can't afford both rent and hospital bills. 🚨

Please donate if you can, and share this post to spread the word.
PayPal: paypal.me/SaveLizNevra
GoFundMe: gofundme.com/f/save-nevra

#pwME #SevereME #MyalgicEncephalomyelitis #MillionsMissing #mecfs

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A simple watercolour painting of a purple wildflower with green stems on a cream background. Lilac text in a handwritten style font reads: 

Endangered Species
Spreading Bellflower (Campanula patula)

Sound the bell for those whose lives spread vulnerably at the feet of the flourishing.
Ring the bell for those whose days of vibrancy are an endangered species.

A simple watercolour painting of a purple wildflower with green stems on a cream background. Lilac text in a handwritten style font reads: Endangered Species Spreading Bellflower (Campanula patula) Sound the bell for those whose lives spread vulnerably at the feet of the flourishing. Ring the bell for those whose days of vibrancy are an endangered species.

Still at the learning stage of watercolour, here’s my depiction of the endangered species Spreading Bellflower, along with a poem for fellow ME sufferers.

#millionsmissimgflowers #togetherendangered #MillionsMissing #ME/CFS #mecfs #chronicillness #chronicpain #poetry #invisibleillness #art 🎨 🌺 ✍🏻

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Spendenaktion für die ME/CFS-Forschung zu meinem 40. Geburtstag von Nicolas: Unterstütze diese Spendenaktion Hallo zusammen, ich heiße Nicolas und bin seit knapp 10 Jahren an ME/CFS erkrankt, einer schweren neuro-immunologischen Krankheit, die kaum erforscht ist und für die derzeit keine zugelassene Behandlu...

Hallo zusammen, ich möchte meinen anstehenden 40. Geburtstag zum Anlass nehmen, um Spenden für die #MECFS -Forschung (@mecfsresearch.bsky.social) zu sammeln. Ich freue mich über jede Spende und jede Unterstützung! 🙂

www.betterplace.org/de/fundraisi...

#MECFS #LongCovid #Millionsmissing

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Nevra has been diagnosed with an infection and needs antibiotics 3x a day for 5 days. She also has a celiac artery compression, fecal obstruction, and inflammation in the pelvic region.

#pwME #ChronicPain #EDS #SevereME #MyalgicEncephalomyelitis #MillionsMissing #mecfs

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Nevra needs to be able to pay for both the hospital stay & ongoing rent but donations have slowed & she can’t afford both. Please donate and boost these posts. Thank you for your ongoing support ❤️

#SevereME #MyalgicEncephalomyelitis #pwME #MillionsMissing #mecfs

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Pay Adrian Bamforth using PayPal.Me Go to paypal.me/SaveLizNevra and type in the amount. Since it’s PayPal, it's easy and secure. Don’t have a PayPal account? No worries.

PayPal: paypal.me/SaveLizNevra
GoFundMe: gofundme.com/f/save-nevra
#SaveLizNevra #SevereME #MECFS #MillionsMissing #pwME

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One of the reasons for these discrepancies is that much of the suffering experienced by ME/CFS patients remains invisible to the public. Some of the most severely ill patients are reclusive and too sick to protest, so we simply disappear from sight and are forgotten. And the symptoms of ME/CFS lie so far outside the realm of everyday experience that the illness can be difficult for healthy people to understand. The cognitive symptoms and loss of energy, meanwhile, make it difficult to explain what’s happening and it contradicts our intuitive understanding of disease, which is that the sufferer either gets better or he gets worse until he dies.

One of the reasons for these discrepancies is that much of the suffering experienced by ME/CFS patients remains invisible to the public. Some of the most severely ill patients are reclusive and too sick to protest, so we simply disappear from sight and are forgotten. And the symptoms of ME/CFS lie so far outside the realm of everyday experience that the illness can be difficult for healthy people to understand. The cognitive symptoms and loss of energy, meanwhile, make it difficult to explain what’s happening and it contradicts our intuitive understanding of disease, which is that the sufferer either gets better or he gets worse until he dies.

10/
#MEcfs #MillionsMissing

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Screenshot from Nevra's instagram page that reads "Losing the ability to eat and process emotions"

Screenshot from Nevra's instagram page that reads "Losing the ability to eat and process emotions"

Nevra's situation is critical. She's living with very severe ME and is struggling to eat and drink. Please help support funds for housing, food, and healthcare.

PayPal: paypal.me/SaveLizNevra
GoFundMe: gofundme.com/f/save-nevra

#SaveLizNevra #SevereME #MECFS #MillionsMissing #pwME

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A lot of us probably have artifacts of a past self. Like the two pairs of shoes ($300 each, one nearly new) and other gear I wore to train for a half-marathon 3 years ago. This led to the #PEM crash that I still haven't recovered from. But I still have the shoes.

#MECFS #disability #MillionsMissing

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Agreed. #tariffrefund #disability #MillionsMissing

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