Explore

@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.

@tallontire.bsky.social Sep 24, 2026, 11:03 AM

An excellent article, tallies very well with my experience with #severeME. Thankyou @georgemonbiot.bsky.social, please keep writing about us.
www.theguardian.com/commentisfre...

@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

@tomkindlon.bsky.social Sep 24, 2026, 12:20 AM

The health news site "Sundhedspolitisk Tidsskrift" has an article about the short film; "Best Practice" on severe ME & conflicts with the authorities.

Google translation:
sundhedspolitisktidsskrift-dk.translate.goog/nyheder/helb...

Screenshot from Science for ME update

#MEcfs #PwME #CFS #SevereME

Denmark The health news site "Sundhedspolitisk Tidsskrift" has an article about the short film; "Best Practice" on severe ME and conflicts with the authorities. It includes an interview with one of the actors, Hjalte Ilsøe Gustavusson who has a family member with ME. He says: .."the film depicts a situation where the authorities follow a procedure blindly and put human responsibility on the shelf". The film is written and directed by Oscar winner Martin Strange-Hansen.
Article (Danish) l Thread

@tomkindlon.bsky.social Sep 23, 2026, 6:18 PM

Ror Preston:

Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed.

New @wecrunchme visual on this topic 💙

#SevereME #MEcfs #PwME

Health-related quality of life declines
sharply at higher levels of ME/CFS disability
Health-related quality of life (EQ-5D-5L) for general population vs. ME/CFS by disability severity
Mean health-related quality of life (EQ-5D-5L)
1.00
0.80
0.60
0.40
0.20
0.89
ME/CFS disability severity →
0.69
95% confidence interval
O represents a health state valued as equivalent to death, with below- O representing health states considered worse than death
0.44
0.02
0.00
General Population Benchmark
Mild (n=40)
Moderate
(n=137)
Data source: Orji et al. (2024) ‘Assessing health state utilities for people with ME/CFS in Australia using the EQ-5D-5L, AQOL-8D and EQ-5D-5L-psychosocial instrument'
Severe
Notes: Disability severity levels were derived from the DePaul Symptom Questionnaire - Short Form (DSQ-SF). The study did not define a separate 'very severe' category; participants above the highest severity threshold were classified as 'severe'.
(n=19)
M
CrunchME
CC BY 4.0

@nlizaki.bsky.social Sep 23, 2026, 2:22 AM

Seriously, we get erased so fast, faster than our most vulnerable peers even

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

#pwME #mecfs #severeME #verysevereME

Screenshot of a conversation reads
Nevra Liz Ahmed: I need help
Nevra Liz Ahmed: I have an idea
Nevra Liz Ahmed: Can we make September bipoc mecfs awareness month
Nevra Liz Ahmed: Or even October
Nevra Liz Ahmed: Where we amplify bipoc accounts and voices and MA

@katieas.bsky.social Sep 22, 2026, 3:34 PM

When will things change?! #SevereME

@padpadpadpad.bsky.social Sep 22, 2026, 1:07 PM

This trip, some of the ways Soph and I connect became harder for her and rarer as a result. She also skipped half of the lunches so I saw her less. Everything gets taken from us eventully.

#severeME #MECFS #pwME

21/09/2026 Losing connection

padpadpadpad.netlify.app/posts/caring...

@anilvanderzee.bsky.social Sep 20, 2026, 6:58 PM

Wow. Oscar winning filmmaker Martin Strange-Hansen has made a short film about the forced removal of a very severe ME patient in Denmark.

This looks really amazing!!

vimeo.com/user10350947...

#pwme #myalgicE #millionsmissing #severeME

@anilvanderzee.bsky.social Sep 19, 2026, 9:21 PM

"A Special Tribute to Anil van der Zee | 2026 Amsterdam ISLC-PAIS Conference"

Thanks to Fred Verdult for his talk and for organizing the honor. Thanks to Michael Chapman for the video of this special moment.

vimeo.com/whei/anil-ro...

#pwme #myalgicE #millionsmissing #severeME

@alex-wears-crocs.bsky.social Sep 19, 2026, 10:56 AM

Apparently sitting up for a minute to stare forlornly at my TV is a luxury I can't afford.
#severeME #lowspoons #millionsmissing #imtiredofthis #chronicillness

@verhac.bsky.social Sep 19, 2026, 2:47 AM

Danke @annachristinam.bsky.social, @lucimair.bsky.social, Silvia Wojczewski, @astridhainzl.bsky.social, @leiss.bsky.social, @kathrynhoffmann.bsky.social & alle Studienteinehmer:innen! 🙌💪💐

#SevereME #VerySevereME #MECFS

2/2

@verhac.bsky.social Sep 19, 2026, 2:41 AM

Bei der diesjährigen ÖGPH (Österreichische Gesellschaft für Public Health) Tagung unter dem Titel „Unified Health in a Globalised World“ war #SevereME und #VerySevereME in den 7 nominierten Abstracts (aus über 300 Einreichungen) für den Horst Noack Preis vertreten.

#MECFS

oeph.at/oegph-2026/

1/2

Horst Noack Preis für Innovation in Public Health 2026
Bei der heurigen Jahrestagung wird wieder der Horst Noack Preis für Innovation in Public Health von der ÖGPH im Andenken an einen der Pioniere für Public Health in Österreich vergeben. Dieser Preis soll Arbeiten auszeichnen, die nicht nur qualitativ hochwertig sind, sondern innovative Ansätze verfolgen und das Potenzial haben, nachhaltige Veränderungen herbeizuführen. Basierend auf den Nominierungen für das beste Paper, die von den Reviewer:innen abgegeben wurden, hat der ÖGPH-Vorstand nochmals eine Bewertung durchgeführt. Die Bewertungskriterien waren:

– Wissenstransfer und Community Engagement
– Kreativität und Innovationskraft
– Methodische Rigorosität
– Nachhaltigkeit und gesellschaftliche Wirkung

Die nominierte Abstracts für den Horst Noack Preis für Innovationen in Public Health sind:

291 Menschen mit (sehr) schwerer ME/CFS und ihre pflegenden An-/Zugehörigen: Zur Notwendigkeit multiperspektivischer Forschung auf Augenhöhe (Verena Hackl et al.)

Wir gratulieren alle nominierten Autorinnen bereits jetzt ganz herzlich! Alle Preisträgerinnen werden während der Abschlußplenary am 18.9. bekannt gegeben.

@anilvanderzee.bsky.social Sep 18, 2026, 5:30 PM

Teenagers and siblings Anna and Moritz have very severe ME. They lie in darkened rooms only meters apart, yet they have not seen each other for almost a year.

Watch this short heart wrenching segment from a documentary about ME.

youtu.be/NgBPfuMtA6s?...

#pwme #severeME