MillionsMissingNL

Our livestream is a bit delayed! Our goal is to go live on YouTube and Instagram at 1 pm ET now!

#MillionsMissing #DisabilitySOS

YouTube video by Anil about ME Doctors as Patients (with subtitles)

1) OMG we did it‼️‼️

In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before.

They speak candidly about their experiences

youtu.be/J0ywwLIfH_w?...

MillionsMissingNL on X: "𝗔𝗰𝘁𝗶𝗲 𝗦𝗢𝗦: 𝗥𝗲𝗱 𝗼𝗻𝘇𝗲 𝘇𝗼𝗿𝗴, 𝗼𝗻𝘀 𝗼𝗻𝗱𝗲𝗿𝘇𝗼𝗲𝗸, 𝗼𝗻𝘀 𝗿𝗲𝗰𝗵𝘁 𝗼𝗽 𝗲𝗿𝗸𝗲𝗻𝗻𝗶𝗻𝗴 Op 12 mei, #WorldMEDay, staan we stil bij miljoenen mensen wereldwijd die leven met ME/CVS, een ernstige, chronische ziekte die vaak mensen jarenlang aan bed of huis https://t.co/rLfd9u4N8I" / X 𝗔𝗰𝘁𝗶𝗲 𝗦𝗢𝗦: 𝗥𝗲𝗱 𝗼𝗻𝘇𝗲 𝘇𝗼𝗿𝗴, 𝗼𝗻𝘀 𝗼𝗻𝗱𝗲𝗿𝘇𝗼𝗲𝗸, 𝗼𝗻𝘀 𝗿𝗲𝗰𝗵𝘁 𝗼𝗽 𝗲𝗿𝗸𝗲𝗻𝗻𝗶𝗻𝗴 Op 12 mei, #WorldMEDay, staan we stil bij miljoenen mensen wereldwijd die leven met ME/CVS, een ernstige, chronische ziekte die vaak mensen jarenlang aan bed of huis https://t.co/rLfd9u4N8I

𝗔𝗰𝘁𝗶𝗲 𝗦𝗢𝗦: 𝗥𝗲𝗱 𝗼𝗻𝘇𝗲 𝘇𝗼𝗿𝗴, 𝗼𝗻𝘀 𝗼𝗻𝗱𝗲𝗿𝘇𝗼𝗲𝗸, 𝗼𝗻𝘀 𝗿𝗲𝗰𝗵𝘁 𝗼𝗽 𝗲𝗿𝗸𝗲𝗻𝗻𝗶𝗻𝗴

Op 12 mei, #WorldMEDay, staan we stil bij miljoenen mensen wereldwijd die leven met ME/CVS, een ernstige, chronische ziekte die vaak mensen jarenlang aan bed of huis gekluisterd houdt: x.com/MMissingHoll...

#MillionsMissing

🚨 Actie SOS: Red onze zorg, ons onderzoek, ons recht op erkenning 🚨

Long Covid Nederland doet graag mee met de krachtige actie van @meactnet.bsky.social en @mmissingholland.bsky.social voor World ME Day!

Omdat de helft van de long covidpatiënten voldoet aan de criteria van ME, vinden

1/2🧵

YouTube video by The ME Action Network Jaime Seltzer shares why she is protesting in DC on May 12 for #MillionsMissing! #DisabilitySOS

Join Jaime Seltzer, Scientific Director at MEAction, on May 12th for #MillionsMissing! Find all the details to show up in DC or online here: www.meactions.org/millionsmiss...

youtube.com/shorts/3CFxm...

@exceedhergrasp1.bsky.social

#DisabilitySOS #SaveOurScience #pwME

#MillionsMissing 2025: Sending Out An SOS For #MillionsMissing 2024, #MEAction is sending out an SOS.

Announcing #MillionsMissing 2025 on May 12th!

#MEAction is organizing a community-wide protest to send out an SOS to our elected officials: Save our Support Systems. Save our Science. Save Our Society. Learn more here: www.meaction.net/2025/04/02/m...

#pwME #MECFS #LongCovid #disability

Photo in the middle of a square with text above and below. Photo shows people gathered at a protest wearing red shirts, protective face masks, and holding signs. Text above photo: #MEAction Protest Guide Now Available. Text below photo: Part 1: For people who are planning a protest/activism to include people with ME. Part 2: For those planning to attend an in-person protest that have ME/CFS

A reminder for those participating in upcoming protests and those planning protests- #MEAction offers a guide: How to Protest with ME And other Energy-Limiting Chronic Diseases guide: www.meactions.org/_files/ugd/b...

P.S. News about #MillionsMissing coming soon!

#pwME #MECFS #LongCovid

Hello, new followers! Past time I did an intro thread. 👋

I'm Jaime Seltzer, Scientific Director at #MEAction, a nonprofit for people with infection-associated chronic illnesses like #MECFS & #LongCOVID. I maintain research affiliations w/Stanford U & Université de Montréal. 🧵

Ik ben al 5 jaar ziek. Ik ga eerder achteruit dan vooruit. Huisgebonden, vaak bedgebonden. Verdwenen uit de maatschappij en uit de levens van dierbaren. Met mij honderdduizenden anderen
 
#NietHersteld #5JaarLongCovid #LongCovidAwarenessDay2025

@niethersteld.bsky.social @jetroz.bsky.social

Guus is een vrouw met lang bruin haar en een bril. Ze ligt in een hooglaagbed met een paars laken en een roze-oranje deken in een woonkamer. Een klein zwart hondje rust naast haar op het bed. Ze heeft een serieuze blik en houdt een protestbord vast met de tekst: "Long COVID is een GEZONDHEIDSCRISIS". In de kamer hangen meerdere posters en borden aan de muren, geschreven in het Nederlands, die pleiten voor bewustwording en sterker beleid voor Long COVID-patiënten. Op een van de posters staat: "Ik ben al 1521 dagen ziek. Hoe lang nog?". Op een ander bord op het nachtkastje staat: "5 jaar Long COVID. Nog steeds geen beleid". Op de achtergrond staat een houten kast.

#5JaarLongCovid, nog steeds #NietHersteld

Vandaag, op #LongCovidAwarenessDay2025, spreken velen zich uit over hun leven en ervaringen met #LongCovid.
Voor veel mensen veranderde alles van de ene op de andere dag 🧵

📣 Vandaag, 14u! Doe mee!

#LongCovid 🦠 CORONA IS NOG ALTIJD ONDER ONS

✅ vijf jaar later
✅ dus pas een beetje op (elkaar), mensen

‘Er komt zeker een nieuwe piek aan’ | via AD

Er gaat, zie ik, weer eens een direct controversiële studie rond die uitspraken doet rondom cognitieve therapie + bewegingstherapie voor long covid.

Zonder op details van die studie etc in te willen gaan, wat mij blijft verbazen: even een 🧵 over hoe dit bij mij persoonlijk ging:

Je wordt ziek. Je

That BMJ review of Long Covid therapies does not show what it says it does The BMJ have published a “living systematic review” of interventions for the management of Long Covid. It sets out to gather all relevant studies, and to comb their findings in order to see what works...

A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise

As ever, the devil is in the detail

TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted

(Too bad they hid the crucial deets in an online supplement!)

cc #pwME #MECFS

Een perspectief wat niet vaak belicht wordt: mantelzorger voor een partner met ME. Mark windt er geen doekjes om. De ziekte is slopend, hij moet minder werken en mantelzorgen kost hem al zijn energie.

Er is geen zorg voor mensen met ME. Ze kunnen niet naar de Long Covid poli's.

YouTube video by Broken Battery ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.

youtu.be/RiwX9Y0NbiQ?...

1) The German agency for research BMBF has published the results of their call for proposals on ME/CFS. Approximately € 15 million is going to 7 projects and research networks over the period 2024-2027.

👀 👀 have a look at how you can help improve physiotherapy education

Whilst I’m not leaving X as yet, I would very much like to spend more time here.

So, if you see this and you’d be kind enough to share it to let readers find me, that would be greatly appreciated. Hi!

Black square with white and red writing. Text: #MEAction’s Petition to the NIH to Fund the ME/CFS Roadmap now has over 7,000 signers! Add your voice. Sign now!

✨This petition will close TOMORROW, Nov 15!✨ We're over 7k-- next stop 10k!

In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.

Sign & share widely!

US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE

ALT TEXT: Shot from Avatar the movie. It shows 2 blue people who are on flying green monster birds in the BlueSky.

🦋NAVIGATING THE BLUESKY 101
We've been Sky Geeking so you hopefully don't have to.
Our first (proper) thread will cover:
CULTURE; ACCESSIBILITY; ALGORITHM; ENGAGEMENT; FINDING YOUR TRIBE; TWEAKS; COOL TOOLS; FUNKY BISCUITS 🧵1/18

I have started a Starter Pack for ME and Long COVID. 💙

It includes some mutuals with other packs but also some new faces too. :)

Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙

go.bsky.app/6R7bqc7

From ‘yuppie flu' to ’anti-recovery activists’ Why narratives around ME and Long Covid matter – and how to change them

www.thereforme.uk/p/from-yuppi...
Do read this article by Karen Hargrove, a founder of “There for ME”. She says: "One of my main takeaways from years working on narratives is that narratives aren’t fixtures in the world, they’re something we all have the power to influence."

Omdat ik de internationale Long Covid, ME, etc starterpack zo handig vond voor het vinden van wat familiar faces ben ik deze Nederlandse variant net even snel gestart. Ga hem later nog aanvullen! En doe gerust suggesties!

go.bsky.app/BkULsee

Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot Chronic fatigue syndrome is as physiological as a broken leg. ​We must learn all we can from this tragic case, says Guardian columnist George Monbiot

1. Abuse and harassment are never acceptable. But this is not the first time I’ve seen an emphasis on abuse and harassment shielding bad science. This is a short thread on how it works.
www.theguardian.com/commentisfre...

Thinking about the issues listed in this thread, it seems to me that there's a strong case for a public inquiry into the chronic mistreatment of people with ME/CFS.

Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot Chronic fatigue syndrome is as physiological as a broken leg. ​We must learn all we can from this tragic case, says Guardian columnist George Monbiot

This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. www.theguardian.com/commentisfre...

📌

Hey, #NEISvoid!

If you're reading this, reply to connect with the Twitter exodus who are in the disability advocacy space.

Use a "pushpin" icon and then check your replies to find this post again and follow new folks who reply.

And share! Let's keep this post circulating as a way to reconnect.

A still of the video where a man is saying "it took me 7 years to be properly diagnosed" Text underneath: Why #TeachMETreatME is so important. #MillionsMissing 2024 The ME Action Network 3.93K subscribers Subscribe 61 Share 389 views 12 May 2024 Thank you to everyone who sent in a video and shared their story. Please join in Teach ME Treat ME today. #TeachMETreatME is a campaign to educate hospital systems and medical schools about myalgic encephalomyelitis (ME aka ME/CFS) by hosting Teach ME events at medical schools, and Treat ME events at hospital systems across the U.S. It is also an online campaign to reach clinicians and ask them to take continuing medical education about ME.

A 3-minute @meactnet.bsky.social video where numerous #MEcfs patients mention how long it took for them to get diagnosed.

#TeachMETreatME is an #MEAction campaign to educate healthcare workers about #MyalgicEncephalomyelitis by hosting Teach ME events

www.youtube.com/watch?v=h_Pl...

#CFS #PwME