Latest posts tagged with #millionsmissing on Bluesky
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
#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
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
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
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
"50 reasons to mask"
#maskup #covid #flu #measles #healthcare #disability #mecfs #chronicillness #millionsmissing
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
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
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
“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.
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
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
www.bbc.co.uk/news/article...
#ChronicFatigueSyndrome #MyalgicEncephalomyelitis #longhaulers #MEcfs #MyE #CFS #ME #pwME #Fibromyalgia #fibromyalgie #millionsmissing #LongCovid
#BeAllYouCanBe
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
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 🎨 🌺 ✍🏻
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
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
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
PayPal: paypal.me/SaveLizNevra
GoFundMe: gofundme.com/f/save-nevra
#SaveLizNevra #SevereME #MECFS #MillionsMissing #pwME
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.
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
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
Agreed. #tariffrefund #disability #MillionsMissing
#MECFSis my cage. I have moderate to severe ME. I've had my diagnosis since 2014. I caught a viral infection in July 2014. It not only brought me out of remission with my autoimmune diseases, but it ended my life as I knew it. MECFS is a serious, chronic, multi-system, complex neuroimmune disease. It's common for me to have unexplained fevers. My brain and central nervous system go into overdrive. I don't have the energy to handle much time outside of my home. Life as I knew it crashed to a halt. My life has been extremely limited for over a decade. My quality of life is low. I'm in pain all the time, but most concerning is PEM. Even a spike of emotions can make me weak as a kitten. I never know what will set it off. Post exertional malaise occurs with the smallest activities that are not part of my normal day to day routine. I live with strict limitations to try and avoid more crashes. If I overdo it, I lose months in crashes. I live in daily fear of losing more quality of life. There is no cure. Very few doctors know how to help. We don't have any approved treatments or diagnostic tests but OMF and many other orgs are working hard to change things for us. People with MECFS fade from their lives and that is why we say Millions Missing. All it took was a virus for #MyalgicE to take me prisoner and become my cage. Are you a #pwME? How much have you lost because of this disease? Chronically yours, Carrie, #MySeveralWorlds
I have moderate to severe ME. MECFS is a serious, multi-system, complex neuroimmune disease. My life has been extremely limited for over a decade. My QOL is low. I'm in pain all the time. Even a spike of emotions causes PEM. There is no cure. We are the #MillionsMissing.
Carrie, #MySeveralWorlds
Guten Morgen 😮💨 so ich werde um 5:30 Uhr von meiner Mama abgeholt und zum Herz MRT gebracht. Termin 6 Uhr. Unchristliche Zeit! Nacht war seeeeehr kurz….
Hoffe, es klappt ohne Crash!
#MECFS #longcovid #diemaskebleibtauf #learnaboutme #millionsmissing #earlybird
2/ 📲 Campagnes digitales #MillionsMissing (avec le grand succès de la vidéo “Bref, j’ai l’EM”), Blue Sunday, Severe Me Day…
Gestern waren meine Eltern mal wieder da und haben mich mit Essen und Lebensmitteln vom Italiener versorgt. Außerdem im Gepäck: selbstgestrickte Socken und Gebäck von Nonna 🥰 so süß!
Heute ordentlich PEM.
#MECFS #longcovid #learnaboutme #millionsmissing #covidisnotover #PEM
www.onebillionrising.de/2026-berlin-...
Ich bin in Gedanken dabei-support. Bin eine der #millionsmissing
