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@laurajmg.bsky.social Oct 10, 2026, 5:33 PM

A post about me and my ME. #ME #pwME #CFS #MEcfs #MillionsMissing

@laurajmg.bsky.social Oct 10, 2026, 5:30 PM

2. Donate, if you can spare a dime and signal-boost fundraisers. I recommend #MEAction #MillionsMissing, the Open Medicine Foundation omf.ngo, & Dr. Ron Davis's search for a cure at Stanford med.stanford.edu/MECFS.
(hopefully I haven't broken those URL links!)

@stpaulsbay.bsky.social Oct 10, 2026, 3:45 PM

#PAIS #LongCovid #Millionsmissing #ChronicIllness #Spoonie #pwME #NEISVoid

@anilvanderzee.bsky.social Oct 8, 2026, 2:13 PM

Indrukwekkend stuk met Caroline Van Kessel door ellen de visser.

Sorry zou al een beginnetje zijn Sophie Hermans.

#QVS #LongCovid #lyme #postsepsis #pwme #myalgicE #millionsmissing #PAIZ #PAIS #IACI #IACC

www.volkskrant.nl/wetenschap/l...

@nlizaki.bsky.social Oct 1, 2026, 6:50 AM

In Pakistan, landlords do not like to rent to unmarried women, much less disabled women. Your support helps Nevra overcome barriers and meet basic needs for housing, food, and medical care.

gofundme.com/f/save-nevra
paypal.me/SaveLizNevra

#SaveLizNevra #MECFS #SevereME #MillionsMissing #pwME

@stpaulsbay.bsky.social Sep 30, 2026, 8:47 PM

ME/CFS is trying to animate a corpse from the inside out. You look normal but you are dying inside. Patients aren't just deconditioned or depressed, you epic assholes. I’ve lived on both sides now and you are dead wrong.
#NEISVoid #pwME #millionsmissing #chronicillness #rs5522 #LongCovid

@swastrosarah.bsky.social Sep 30, 2026, 4:55 PM

m.youtube.com/watch?v=XPZp...
2022 #MillionsMissing in Parliament Square UK.

Not until 2027 will @england.nhs.uk be abolished.

5 years, many more deaths. (Most are not reported. Some recorded as CFS).

Thanks as always to @alemmatthees.bsky.social mentioned just after half way in.

@stpaulsbay.bsky.social Sep 30, 2026, 12:39 PM

www.beyondbloodtests.org
#rs5522
#Spoonie
#MillionsMissing
#ChronicIllness
#pwME

@mecfs.at Sep 29, 2026, 4:52 PM

👉Unter http://www.meinewürd... könnt ihr von betroffenen Menschen und Fachärzt:innen hören, warum sich das Begutachtungssystem ändern muss.

#ME/FCS #MillionsMissing #unversorgtseit1969
3/3

@mecfs.at Sep 28, 2026, 2:31 PM

Wir bedanken uns ganz herzlich bei Josef Zinsberger für die Aktion und die langjährige Unterstützung und freuen uns über zahlreiche Teilnahme an der Malaktion!

Bilder: © Josef Zinsberger

#ME/CFS #MillionsMissing

@alex-wears-crocs.bsky.social Sep 28, 2026, 11:22 AM

I still have so much life left to live, if only I could live it. #millionsmissing #severeME

@nlizaki.bsky.social Sep 28, 2026, 7:00 AM

‼️ URGENT UPDATE FOR NEVRA ‼️

Please share widely and support.

Links:

gofundme.com/f/save-nevra
paypal.me/saveliznevra

#myalgicencephalomyelitis #SaveLizNevra #SevereME #MECFS #MillionsMissing

@dgmecfs.bsky.social Sep 27, 2026, 11:11 AM

🥳🎉 2026 markiert das zehnte Jahr seit der Vereinsgründung der Deutschen Gesellschaft für ME/CFS e. V. im April 2016. Genau heute vor 10 Jahren, am 27. September 2016, sind wir als Verein bei der #MillionsMissing - Aktion in Hamburg erstmals öffentlich in Erscheinung getreten. ↘️

Schriftzug: Deutsche Gesellschaft für ME/CFS: 10-jähriges Jubiläum seit der Vereinsgründung 2016.

Im Hintergrund sind Bilder des ersten öffentlichen Auftritts der DG.ME/CFS bei der MillionsMissing-Aktion 2016 in Hamburg zu sehen: oben sieht man gen Himmel aufsteigende Luftballons, unten sind zahlreiche Schuhe mit Infoblättern von ME/CFS-Erkrankten auf dem Boden verbreitet zu sehen, die als Teil der MillionsMissing-Aktion auf das Schicksal der vielen Betroffenen aufmerksam machen sollen.

@longcovidadvoc.com Sep 26, 2026, 8:37 PM

#longcovid #MEcfs #millionsmissing #disability #pwME

@nlizaki.bsky.social Sep 26, 2026, 5:14 PM

‼️ URGENT UPDATE FOR NEVRA ‼️

Please share widely and support.

gofundme.com/f/save-nevra
paypal.me/saveliznevra

#myalgicencephalomyelitis #SaveLizNevra #SevereME #MECFS #MillionsMissing

Nevra is currently in the worst ME/CFS crash she has experienced.
Her neurological and sensory symptoms have deteriorated severely, alongside major MCAS reactions, CCI symptoms and pain.
She now spends almost all of her time in darkness and often needs sunglasses even inside her room.

Nevra finally secured an apartment that is mould- free with the help of her brother as the tenant. The landlords don't rent to single females as the society she lives in in Pakistan is rife with gender discrimination.

Nevra urgently needs aggressive rest.
Instead, she has been forced to use the little energy she has on:
* securing housing
* landlord negotiations
* organising carers
* interviewing PAs
* contracts and paperwork with and without lawyers, graphic designing
* setting up a functioning, accessible home
* trying to access medical care
She physically cannot keep doing all of this herself.

Things have deteriorated further.
First, Nevra went 36 hours without any food, water, or medication, and then weeks later, she had to be rushed to the hospital after developing dangerous medication-withdrawal symptoms.
She is currently experiencing seizures, and doctors are trying to stabilise her.

@ramsestemmerman.bsky.social Sep 25, 2026, 2:49 PM

"Arnaud Denis was een bekende Franse acteur, theaterregisseur/toneelschrijver. Na een operatie voor een liesbreuk in 2023 kreeg hij ernstige gezondheidsproblemen, waaronder chronische pijn en #MEcvs (myalgische encefalomyelitis/chronisch vermoeidheidssyndroom)."

#RIP #MillionsMissing #Euthanasie

@eileenparkes.bsky.social Sep 24, 2026, 9:25 PM

Thanks for writing this #millionsmissing

@crashmargulies.bsky.social Sep 24, 2026, 7:39 PM

New blog post: Memorializing ME/cfs Deaths - Arnaud Denis

crashmargulies.dreamwidth.org/37076.html

#MEcfs #MillionsMissing #MAID #MyalgicEncephalomyelitis

Photo of Arnaud Denis, a young white man with dark eyes, dark short hair, and a dark short goatee. It's digitally set over a distressed wood background with blue roses and a blue butterfly. Text reads, Arnaud Denis. Rest in Peace. September 22, 2026

@anilvanderzee.bsky.social Sep 24, 2026, 10:59 AM

Great rant by George Monbiot about the fact despite new guidelines patients with ME are still poorly treated in the UK. Unfortunately it doesn't seem be much better elsewhere such as the Netherlands...

#pwme #myalgicE #millionsmissing #severeME #LongCovid #PAIS #IACI

@cludaix.bsky.social Sep 23, 2026, 10:06 AM

Your skeet is a slap in the face of every person that experienced trauma and ongoing sickness because of covid, imho. It is still supported by science to wear a mask and every time i see someone with a mask i don't feel alienated at all but SEEN, respected and not forgotten! #millionsmissing