Elja Ruben

Opinie: Honderdduizenden zieke Nederlanders wachten op perspectief, maar niemand ziet het Op 30 november is het protest op het Malieveld, om aandacht te vragen voor patiënten met Post Acuut Infectieus Syndroom (PAIS): zieke mensen die je nauwelijks tegen komt in krantenkoppen, maar die int...

Rake woorden van mantelzorger Onno in de Volkskrant vandaag. ❤️‍🩹🔥

“Het dunne boekje over de redding van deze mensen mist een held en een happy end. Wat nu rest is een laatste, lege bladzijde waar een toekomst had moeten staan.”
#PAISprotest #NietHersteld

www.volkskrant.nl/columns-opin...

Illustratie van een klok met daarbij de tekst ‘Nog 1 week tot’ en het logo van ‘Het PAIS Protest’

📢 Nog een week en dan is het zover: het #PAISProtest!

Kom je naar het Malieveld of protesteer je online mee? 💪

Samen komen we in actie en eisen we verandering voor alle mensen met PAIS. Het is noodzakelijk dat er langetermijnbeleid én erkenning komt.

30 november om 14:00 🧵

David Tuller's Trial by Error Spring 2025 Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Spring 2025. Your gift will make a difference!

Wow! Closing in on 300 donations and 60% of the goal. Thanks!! crowdfund.berkeley.edu/project/46120

Do you know someone who could Walk for ME?

Find out more:

www.facebook.com/WalkforMEUK/
www.walkforme.co.uk
Instagram @walk_for_me_
X @Walk_4_ME
BlueSky @walk4me.bsky.social

Huge thanks to Ian Peters via @despicablemebsky.bsky.social ky.bsky.social for the video!

Tuller Time!

Please help to keep @davetuller1.bsky.social funded for another 6 months of crucial work for people with ME

Are you Dutch without creditcard? I have a tikkie to make donating easier!

#MillionsMissing #mecvs #Longcovid #mecfs #postcovid #qvs #postlyme #PAIS #PAIZ

Kabinet, dit loonstrookje strookt niet #IkVerdienHetOok Stel je voor: je hebt een chronische ziekte waardoor een fulltimebaan voor jou geen mogelijkheid is. Of je hebt een ongeluk gehad, waardoor je maar voor een gedeelte van de tijd kunt werken. Je werkt ...

Ik heb zojuist de volgende petitie ondertekend: Kabinet, dit loonstrookje strookt niet #IkVerdienHetOok

Doe je met me mee?

actie.degoedezaak.org/petitions/ka...

Here's a thread of my coverage of the post viral ethics workshop hosted and organized by @vmatthiesboon.bsky.social at the Radboud.

Highly recommend giving @theawkwardyeti.bsky.social a follow! 😁

🚨Belgium, Save-the-Date alert!

January 29th ⏩ Online action to hit the national threshold of 14,805!

Do you live in the country? 🇧🇪

Join our WhatsApp group and help provide safe and accessible abortion across the EU!

WA group link: chat.whatsapp.com/Cfo6hVXR2oYA...

Nieuwe enquête over kinderen met PAIS | ME/cvs Vereniging Vul de enquête over kinderen met PAIS (<21 jr) in. Alle input (wel of geen ervaring met drang of dwang) is welkom.

Help je mee ouders te bereiken?
Enquête voor ouders van met minderjarige kinderen met #mecvs #Longcovid #postcovid #qvs #postlyme #qvs #pais #MillionsMissing

me-cvsvereniging.nl/nieuws/enque...

vragenlijst.dezorgvraag.nl/kindmetpais

🌟 From April 2024 to today...
✔️ 1 million signatures? Checked!
✔️ Threshold in 7 countries? Nailed it!
But the mission isn’t over.
✍🏻 If you’re an EU citizen, please sign. 
🤲🏻 If you believe abortion is basic healthcare, spread the word.
We’ve come far, but the finish line needs all of us. ♥️

Steengoede video die binnen een half uur de geschiedenis van #ME uitlegt. Ook heel waardevol voor mensen met #longcovid, om te leren van onze geschiedenis zodat deze zich niet herhaald

#MillionsMissing

Hey y’all, have been slowly assembling a starter pack w/orgs and people who do disability, chronic illness and/or health justice work.

It’s far from comprehensive but does have many people doing amazing things (plus, uh, me, because the tech won’t let me take my face out of that humbling lineup 🤦🏼‍♀️)

With Bluesky user numbers rocketing, more official news accounts are arriving.

Here is a starter pack of major media outlets.

Feel free to repost, I’ll keep this updated as more arrive.

For my American friends! Call your reps to protect non profits!

Here’s some cool stuff you can do with Bluesky It’s not just an Alf pics repository.

I learned some stuff about Bluesky I did not know by reading this.

Maybe worth passing it on to others so we can all start getting the full benefit of the 🦋.

📍

And this one @claguenjc36.bsky.social 😊

This!

Happy Saturday, everyone! If you have a moment and would like to watch something truly hopeful for #LongCovid and #MECFS sufferers, please watch David Putrino’s #UniteToFight2024 speech. So much already discovered or on the horizon.

Thank you so much for all your work, @putrinolab.bsky.social !

@claguenjc36.bsky.social this might help

@claguenjc36.bsky.social this might help

I'm not sure how I share, so I'll tag you under a couple of messages that might be helpful

Sky Follower Bridge - Chrome Web Store Instantly find and follow the same users from your Twitter follows on Bluesky.

LOOKING FOR OLD TWITTER FRIENDS? Use the Chrome browser add-on Sky Follower Bridge 🧵

I’ve added quite a few new connections to my #MECFS and #LongCOVID starter pack.

Still working on getting caught up on requests, but if you visited it before, you may want to visit again for some awesome newbies. 💙

This is so helpful! Thank you! I'd like to be added

I saw a patient last week with ME who in 2023 was told by the MECFS service to ‘get back to the gym’. She did 20 minutes, collapsed and hasn’t walked since. The advice is still out there, still wrong and the harm is real.

News in Brief - November 2024 This thread has a Science for ME 'News in Brief' post for each week in November 2024 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman....

Find #MECFS, #LongCovid, and related news, advocacy and research items from w/c 4th Nov in our latest News in Brief forum post.

Discover brief headlines and links to further reading for:
News, articles and advocacy
Coming events
Research news
& Research

www.s4me.info/threads/news...

Can you spare a minute to help this campaign? Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

Cochrane is stubbornly refusing to withdraw the 2019 review recommending exercise therapy for ME/CFS despite being supplied with ample evidence that it doesn't work and causes harm for #pwME with post exertional malaise.
Please sign the petition:
chng.it/zTZ7vX9Czd