#MillionsMissing
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lawerne.bsky.social
Das verändert mich. Sehr.

Mir stellt sich immer öfter die Frage, wie lange ich noch in der Lage sein werde AUSHALTEN zu kann.

Denn auch das Aushalten kostet viel Kraft.

#millionsmissing
October 30, 2026 at 6:11 AM
sickness.bsky.social
A friend from my old work invited me to her wedding, even though she knows I can't go.

Its so touching, makes me feel less forgotten.

😭 (happy tears)

#MEcfs #MillionsMissing
October 27, 2026 at 8:16 AM
butchgeared.bsky.social
Those educated on MECFS alrdy know.

neglect is rampant, is why #MillionsMissing exists.

neglect PLUS physical abuse ....is why im going to lose my friend entirely.

please assist
butchgeared.bsky.social ⛰️ kir [he/him] @butchgeared.bsky.social · 8d
Black MaGe, DISABLED, has been enduring intense DV from mentally unwell cohabitant as funding continues to reduce alongside online presence (MECFS, homebound, diabetic).

i've been posting repeatedly on IG, but i rely on your eyes to do smth in 1st place. pls do.
linktr.ee/torqu111
#MillionsMissing
flyer that shows a Black person bedbound and sick, text reads as follows: the quality of our engagement is poor. mem is sick. ive been posting from work for days. nothing gives. im not asking for mega comments, just please be normal: worry, share, donate, express fear, urge support. details in next slide, read it, but the TLDR is: need meds, food, and relief. cash, ven, kofi is memwho, and paypal is xomemereytwod. description by memwho2 on instagram that reads as follows. "pls help tonight I need fever cold meds/kleenex/food. I have long Covid and MECFS from being chronically ill getting SARS infections while a homeless, healthcare worker and restaurant+gig courier, in ongoing DV, that started after my father abused us both, taking (paid by me & in my name) car from mechanic and hiding it. Our situation was never safe anyways. we both had families we needed to be away from & now we are here. stuck." the rest of their description reads as follows. "just recently started treating type 2 diabetes after short-lived treatment stopped when I was 14. i’ve been shopping in person frequently, not affording deliveries. I’ve been sick most of the month. today having fever+sinus congestion. My home is cluttered and not been deep cleaned since abruptly moving here January 2025. recently our kitchen untwisted again. I had to clean up moldy cabinet, sink water after *cleaning* chicken .. I only went under the sink to put in a roach trap because we’re starting to get them. Even worse, it’s been in my cohabitants, room and the bathroom that he’s nearby. this is just making the conflict worse. on top of this The basement is full of water damaged items for over a year, the second time that we’ve lost major linens and wardrobe this way,. I’ve been pulling them out and need support to get them dumped. a home deep clean+junk removal could be $500. for months only the same few people help me meet critical goals, and they have for years. while my presence online lessens… #MillionsMissing"
October 27, 2026 at 3:22 PM
mossthegaymer.bsky.social
We have almost no photos of us from the past two-ish months.
#severemecfs #myalgicencephalomyelitis #mecfs #dissabled #millionsmissing
October 29, 2026 at 8:58 AM
anilvanderzee.bsky.social
Ziek zijn door ME is kut, maar...

#PAISinzicht #PAIS #pwme #millionsmissing #severeME
October 24, 2026 at 12:56 PM
anilvanderzee.bsky.social
Minister Sophie Hermans stelt dat ze gezien de begroting geen geld heeft.

In mijn optiek is dat een kwestie van prioriteiten. Als PAIZ een prioriteit was, dan was er zeker meer mogelijk geweest dan wat er nu gebeurt.

archive.today/Me6cJ

#protestwake #PAIZ #PAIS #myalgicE #millionsmissing
October 25, 2026 at 8:52 PM
andreastudiescovid.bsky.social
From my sofa. Because ME/CFS and Long COVID prevent me from showing up in person. I will still exercise my right to vote. Disabled but determined. Three cheers for democracy! 😷
#mecfs
#millionsmissing
#frailandfurious
#cripthevote
lizmeactga.bsky.social Liz Burlingame @lizmeactga.bsky.social · 11d
From my bed. Because ME/CFS and Long COVID prevent me from showing up in person. I will still exercise my right to vote. Disabled but determined. Three cheers for democracy!
#mecfs
#millionsmissing
#frailandfurious
#cripthevote
A white skinned woman with streaks of gray hair lying in a bed with a dark blue pillow holding up an envelope that reads Official Absentee Ballot.
October 23, 2026 at 1:13 AM
lizmeactga.bsky.social
From my bed. Because ME/CFS and Long COVID prevent me from showing up in person. I will still exercise my right to vote. Disabled but determined. Three cheers for democracy!
#mecfs
#millionsmissing
#frailandfurious
#cripthevote
A white skinned woman with streaks of gray hair lying in a bed with a dark blue pillow holding up an envelope that reads Official Absentee Ballot.
October 22, 2026 at 6:01 PM
stpaulsbay.bsky.social
They assume a body that recharges is a birthright we squandered. They don't know they could have just as easily fallen into the genetic vulnerability and polygenic cascade that traps their energy behind the cell wall. #rs5522 #MECFS #LongCovid #NEISVoid #MillionsMissing
October 22, 2026 at 10:09 PM
meactnet.bsky.social
Join our Pace to the Capitol! We can’t Race, but we can Pace.

Register today to help change policy, culture and research funding for ME and Long COVID. www.meaction.net/pace-to-the-...

Our most ambitious #MIllionsMissing yet!

#pwME #PaceToTheCapitol #pwLC
Join the new #MillionsMissing campaign "Pace to the Capitol." Join in DC, in your community, and from bed. We will have a 7 month long campaign leading up to May 12, 2027 where we will display beds at the US Capitol. Actions in communities and from home will take place from now until then. Please start a fundraiser.
October 21, 2026 at 7:10 PM
butchgeared.bsky.social
Black MaGe, DISABLED, has been enduring intense DV from mentally unwell cohabitant as funding continues to reduce alongside online presence (MECFS, homebound, diabetic).

i've been posting repeatedly on IG, but i rely on your eyes to do smth in 1st place. pls do.
linktr.ee/torqu111
#MillionsMissing
flyer that shows a Black person bedbound and sick, text reads as follows: the quality of our engagement is poor. mem is sick. ive been posting from work for days. nothing gives. im not asking for mega comments, just please be normal: worry, share, donate, express fear, urge support. details in next slide, read it, but the TLDR is: need meds, food, and relief. cash, ven, kofi is memwho, and paypal is xomemereytwod. description by memwho2 on instagram that reads as follows. "pls help tonight I need fever cold meds/kleenex/food. I have long Covid and MECFS from being chronically ill getting SARS infections while a homeless, healthcare worker and restaurant+gig courier, in ongoing DV, that started after my father abused us both, taking (paid by me & in my name) car from mechanic and hiding it. Our situation was never safe anyways. we both had families we needed to be away from & now we are here. stuck." the rest of their description reads as follows. "just recently started treating type 2 diabetes after short-lived treatment stopped when I was 14. i’ve been shopping in person frequently, not affording deliveries. I’ve been sick most of the month. today having fever+sinus congestion. My home is cluttered and not been deep cleaned since abruptly moving here January 2025. recently our kitchen untwisted again. I had to clean up moldy cabinet, sink water after *cleaning* chicken .. I only went under the sink to put in a roach trap because we’re starting to get them. Even worse, it’s been in my cohabitants, room and the bathroom that he’s nearby. this is just making the conflict worse. on top of this The basement is full of water damaged items for over a year, the second time that we’ve lost major linens and wardrobe this way,. I’ve been pulling them out and need support to get them dumped. a home deep clean+junk removal could be $500. for months only the same few people help me meet critical goals, and they have for years. while my presence online lessens… #MillionsMissing"
October 26, 2026 at 3:27 AM
barbaralccarer.bsky.social
Danke dass ihr #MECFS Patient:innen nicht vergesst! 🙏
#Millionsmissing
October 20, 2026 at 12:22 PM
meactionscotland.bsky.social
Did you know that MEAction UK has its own mailing list? Sign up for a closer look at our work in England, Scotland and Wales, including campaigns, updates and information. meaction.org.uk/sign-up

#MECFS #LongCovid #MillionsMissing
Illustration of a red envelope on blue background. MEAction UK logo. Have you signed up to our mailing list?
October 21, 2026 at 2:14 PM
mecfssd.bsky.social
MillionsMissing 2026-2027 @meactnet.bsky.social Advocacy: Months of action start now, leading to a 5/12 Capitol event w/ 200 beds & calls for ME/CFS research funding & disability services. mailchi.mp/meaction/pac...
UPDATED LINKS: Pace to the Capitol: Our Biggest #MillionsMissing Campaign Yet
mailchi.mp
October 20, 2026 at 7:06 AM
meactnet.bsky.social
MEAction is launching its largest #MillionsMissing campaign yet – “Pace to the Capitol!”

For the next 7 months, MEAction is bringing ME out of the shadows and into public places across America as we pace to the U.S. Capitol! LEARN MORE: www.meaction.net/pace-to-the-...

#PaceToTheCapitol
October 19, 2026 at 7:29 PM
exceedhergrasp1.bsky.social
We've got some incredibly exciting activities and events to announce for this #MillionsMissing, including conversations with scriptwriters about including characters with IACCs, working with the Attorney General's Office, and more! Check it out:
meactnet.bsky.social #MEAction Network @meactnet.bsky.social · 14d
MEAction is launching its largest #MillionsMissing campaign yet – “Pace to the Capitol!”

For the next 7 months, MEAction is bringing ME out of the shadows and into public places across America as we pace to the U.S. Capitol! LEARN MORE: www.meaction.net/pace-to-the-...

#PaceToTheCapitol
October 19, 2026 at 7:40 PM
meactionuk.bsky.social
Did you know that MEAction UK has its own mailing list? Sign up for a closer look at our work in England, Scotland and Wales, including campaigns, updates and information. meaction.org.uk/sign-up

#MECFS #LongCovid #MillionsMissing
Illustration of a red envelope on blue background. MEAction UK logo. Have you signed up to our mailing list?
October 21, 2026 at 2:14 PM
meaction.net.web.brid.gy
Pace to the Capitol: Our Biggest #MillionsMissing Campaign Yet
From your bed, your community, or DC, help us bring ME and Long COVID out of the shadows. Join the campaign today.
www.meaction.net
October 20, 2026 at 3:03 AM
anilvanderzee.bsky.social
A blog about the multiple reasons why I keep fighting. Why I thus far stay alive.

"The fight against the injustice done to the patient community is a big driver.

I just can't and won't shut up about it!!!”
anilvanderzee.com/staying-aliv...

#pwme #myalgicE #millionsmissing #severeME #MECFS
Staying Alive Is My Protest - Anil van der Zee
With the sadly increasing number of people with ME passing away, not uncommonly dying due to suicide or euthanasia, sometimes weekly, I often get asked why I keep holding on with severe ME, or if I ev...
anilvanderzee.com
October 18, 2026 at 10:30 AM
camillebuckner.bsky.social
This is shameful 🤬

#MedSky #MEcfs #SolveME #MEAwareness #MillionsMissing
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · 18d
"The medical establishment is not merely passively neglectful toward people with ME/CFS. It is actively vindictive: A medical textbook doubles down on misinformation and stigma" by K. Johnstone

mecfs.substack.com/p/the-medica...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
The medical establishment is not merely passively neglectful toward people with ME/CFS. It is actively vindictive. A medical textbook doubles down on misinformation and stigma K. Johnstone Oct 09, 2026 An important and widely used medical textbook, Kumar and Clark’s Clinical Medicine has been repeatedly criticized for presenting out-dated and harmful misinformation about ME/CFS. There was a petition asking for the textbook to be updated. Now the new version is out - and it’s worse than ever. ME/CFS is wrongly presented as a psychological illness. Patients living with severe chronic illness are slandered as delusional people who merely ‘believe’ that they are physically ill. The ‘information’ about ME/CFS in the textbook is at this point so far from the current medical and scientific consensus that it can no longer be viewed as merely biased or unbalanced. It’s worse than that. It is prejudiced, malicious, and hateful. The choice to include this misinformation constitutes a deliberate act of harm toward people with ME/CFS. It is slander toward an entire group of seriously ill patients, and I look forward to the day when those responsible are held to account.
October 16, 2026 at 12:13 PM
rachcunneen.bsky.social
So many people are affected by Long Covid, Epstein Barr and other poorly understood viruses. We have #millionsmissing
broadwaybabyto.bsky.social Kelly @broadwaybabyto.bsky.social · 17d
Disability can happen to anyone at any time.

It’s not due to deconditioning or a moral failing.

Many chronic illnesses are the result of a viral infection from which the body never recovers.

We need more awareness, treatments & clean air to reduce viral spread.

www.bbc.com/sport/athlet...
Beth Dobbin: British Olympic sprinter in bed for 22 hours a day after ME diagnosis
Beth Dobbin ran for Great Britain at the Tokyo Olympics in 2021. Five years on, she is largely bedbound after being diagnosed with ME, a devastating illness for which there is no cure.
www.bbc.com
October 16, 2026 at 10:01 AM
ramsestemmerman.bsky.social
Nederlandse media brachten ook dit nieuws, volgt de Belgische?🙏

@pjhuyghebaert.bsky.social
@wimdemaeseneer.bsky.social
@demorgen.be
@standaard.be

“Ik trainde eerst vijf uur per dag, maar nu lig ik 22,5 uur per dag in bed.”

BBC interview.⬇️

#PAIS #MillionsMissing
BBC Sport: Olympic sprinter Beth Dobbin on living with ME/CFS
YouTube video by Broken Battery
youtu.be
October 17, 2026 at 11:52 AM
anilvanderzee.bsky.social
My thoughts about the film Complicated, with children who have EDS/hEDS, where they and their families are not being take seriously. With child protective services as a result.

Medicine needs to do better!

www.facebook.com/share/p/1XDf...

#EDS #hEDS #pwme #myalgicE #millionsmissing
October 16, 2026 at 11:17 AM
fatherhilarious.blog
"I wish it was just fatigue, that would be a walk in the park," she says. "It's so much more than that."
#mecfs #millionsmissing #meaction
www.bbc.co.uk/sport/athlet...
Beth Dobbin: British Olympic sprinter in bed for 22 hours a day after ME diagnosis
Beth Dobbin ran for Great Britain at the Tokyo Olympics in 2021. Five years on, she is largely bedbound after being diagnosed with ME, a devastating illness for which there is no cure.
www.bbc.co.uk
October 16, 2026 at 2:42 PM
laurajmg.bsky.social
A post about me and my ME. #ME #pwME #CFS #MEcfs #MillionsMissing
laurajmg.bsky.social Laura J Mixon @laurajmg.bsky.social · 23d
I'm a big believer in finding moments of joy in the now, and I have a lot to be thankful for. But ME/CFS is such a devastating disorder—not just for us sufferers, but also for our caregivers. And without more funding to find biomarkers, official treatments and a cure, our lives are pretty grim.
October 10, 2026 at 5:33 PM