Welcome new followers 👋. Just a quick explanation. I started using lists because twitter randomly unfollowed people I definitely wanted to follow, so no harm meant in adding you. I do not add people to a list if they mention this in their profile.

can we get treatment now I’m fuckin tired dudes

Weiß die Welt das nicht - oder schaut sie weg? Sanne (38J, 🇳🇱) ist vom Verhungern bedroht, weil ihr die nötige künstliche Ernährung verweigert wird. Maeve Boothby O’Neill (27J, 🇬🇧) starb 2021 aus dem gleichen Grund. In 🇩🇪 verhungerte im September Celine. #MECFS

Just because the death rate is down doesn’t mean the cost isn’t high: mass longterm disability, lost productivity, strained healthcare, disrupted education, and shortened lives. Short-term survival isn’t the only metric that matters.

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Ok, if it will help, I'll explain something about how a lot of US hardware startups, and most MedTech ones, work, and why getting these things to market is so difficult. First- watch this: https://t.co/Acf8hHDrpo (If you don't, you won't understand or believe the rest, and it's

@LizHighleyman @PutrinoLab @HHSGov I agree — I think for me the takeaway is the evidence base is very compelling & persuasive if you can implement it in curriculum / CMEs. It’s not as “contested” as the skeptics thought.

Wie @ValeBodi korrekterweise einfordert, hier meine Meinung zu R53.0 ohne Ironie, Sarkasmus oder Zynismus. Auch wenn das zunehmend schwer fällt, so wie sich das alles entwickelt.

Hello, friends. We have good news and bad news. The bad news is we mysteriously lost access to our former @X account @LongCOVIDPhysio. Despite the past few months of hard work to regain access, it has become clear the best way forward is establish this new account--the good news!

Auf der 19. Tagung des Landessozialgericht Berlin Brandenburg haben sich 130 Richter zu ME/CFS und PCS fortgebildet, ein Thema war auch off-Label Therapien.

When the doors opened the man inside the elevator looked at me and began to ask why I was wearing a mask, but before he could finish the woman next to him began coughing, so he stepped out and stood silently next to me as we waited together for the next elevator.

All eyes on Sanne. Life-saving care being denied ❌. In the Netherlands they're in danger of making the same mistake as with Maeve Boothby-O'Neill. On Thurs 18 lawyers will fight her case in a Maastricht court. Supportive doctors are involved. To see what you can do 👀👇

Almost 50% had LC? Do ppl not recognize this as a tremendous life altering problem?!

Da das Thema gestern wieder aufkam, ich hatte es aber schon vor Wochen geschrieben… Wir sehen, was wir sehen wollen – und wir zeigen, was wir zeigen wollen. Jedes Bild, jeder Einblick nach außen ist nur ein Bruchstück einer viel größeren Realität. Ich könnte zwei Leben

People don't talk about their healthcare to acquittances, and those who are bed/house bound are not seen by anyone but their carer. These conditions show up in healthcare stats but they are invisible illnesses so there is nothing to see, its the absence of a few people they knew

How does 5% of new people with ME/CFS manifest to everyone else? It is a few people they know, most likely acquittances from work, who have been fired or are on long term sick leave. The third with Long Covid shows as the person on their team with a cough or new migraines.

Some Chinese journalists and cameraman posted on social media that they need to do two PCR tests before getting close to Vladimir Putin. It is not a flu.

🧵German cost report of #mecfs and #longcovid combined puts it at 60 billion annually. That is more than the worst natural disaster in Germany since WW2. The Graph shows immense damage since Covid was declared "over" in 2022. Webpage and Youtube video 👇

I've collated all the (now three) image collections put together in the last few days on #Unsplash and #IstockPhoto with images that can be used for articles and blog posts on #MECFS #pwme You can find a blog post here about it: https://t.co/LF7XhiJFzp 🧵(1)

I was in school yesterday, and a class asked me about my mask. I told them about why I wear it, and first one student, then another, quietly said that they had Long Covid. They explained it very matter-of-factly, the way young people sometimes do.

And I cried when I left the classroom.