Susan Fairlie Hall

#MECFS #PwME #GreatestMEdicalScandal

Most people assume stormwater drains filter trash before it reaches the ocean. They don’t. In most cities, the drain is just a direct pipe to the nearest river, bay, or ocean. Whatever you drop on the street flows straight through. Australia figured out a ridiculously simple fix. The city of Kwinana installed mesh nets over two stormwater outlets between a residential area and a nature reserve. In the first collection alone, they pulled out 370 kg of debris before it reached the reserve. In Melbourne, 120 litter traps across six council areas captured 3,468 kg of litter in just six months, including over 75,000 large pieces and nearly 700,000 smaller ones. These nets and traps cost a fraction of what beach or waterway cleanups cost after the fact. When they’re full, they’re lifted out, sorted, and recyclables get processed. The nonprofit running Melbourne’s program put it simply: “The stormwater drain is the last line of defence. In reality, it’s just a funnel straight into the bay.” The technology is cheap and effective. Do you want your city to do this too?

"Don't think for a minute you don't have power... don't think for a minute you can't make change." - Richard Denniss. See more from the Climate Integrity Summit here: australiainstitute.org.au/event/climate_…

How Jingtai Lan cloisonné blends tradition and skill into timeless art

This is a painting by the Spanish painter Sergi Cadenas. It ages from the angle you look at it.

We’re entering a new era in medicine, whether some want to acknowledge it or not. Patients are no longer passive. We are informed, engaged, and, in many cases, forced to become deeply educated in our own conditions just to function, just to survive. Not because we want to be. Because we have to be. When you live with conditions like EDS, MCAS, POTS, ME/CFS, you learn quickly that if you don’t advocate for yourself, no one is going to connect the dots for you. These are complex, under-researched, multisystem illnesses. They don’t fit neatly into a standard protocol or a rushed appointment. So yes, patients research. We read medical literature. We learn the language. We study the mechanisms. We understand treatment options. We come in prepared. And instead of that being recognized for what it is, necessary, it gets dismissed as “self-diagnosing.” But let’s be clear about what’s actually happening. This isn’t overdiagnosis. It’s delayed recognition. It’s fragmented care. It’s a system that does not have the time, training, or structure to manage complex chronic illness the way it should. So patients step in to fill that gap. I was diagnosed with MCAS because I researched the testing and brought it forward. I manage hypovolemic POTS with IV hydration because I took the time to understand my subtype and advocated for appropriate care. That’s not reckless. That’s being invested in my own survival. We are not replacing doctors. We are adapting to a system that, in many ways, has not caught up. So instead of asking why patients are doing this, ask the real question: Why does survival now require the patient to become their own doctor?

This is pure Mongolian magic ❤️ The “Hoos” ritual isn’t just an ancient camel trick, it’s part of a much older nomadic tradition that Mongolians have practiced for centuries with all our animals. Horses, sheep, goats, cattle… every single one of them has been soothed, bonded with, and welcomed into the herd through these sacred songs passed down through generations. The deep connection between Mongolian herders and our livestock is legendary. Proud to see our culture touching the world again! 🇲🇳🐪🐎🐑🐐🐄 #MongolianHeritage #StoryOfTheWeepingCamel

Back in 2003, a German film crew filming in the Gobi Desert captured an incredibly moving moment: after a tough two-day birth, a mother camel rejected her newborn. A nomadic family then performed the ancient Hoos singing ritual passed down for generations. Once the song ended, the camel shed tears and finally accepted her baby. This powerful scene became one of the most memorable parts of the Oscar-nominated documentary The Story of the Weeping Camel.

🦔A researcher invented a fake eye condition called bixonimania, uploaded two obviously fraudulent papers about it to an academic server, and watched major AI systems present it as real medicine within weeks. The fake papers thanked Starfleet Academy, cited funding from the Professor Sideshow Bob Foundation and the University of Fellowship of the Ring, and stated mid-paper that the entire thing was made up. Google's Gemini told users it was caused by blue light. Perplexity cited its prevalence at one in 90,000 people. ChatGPT advised users whether their symptoms matched. The fake research was then cited in a peer-reviewed journal that only retracted it after Nature contacted the publisher. My Take The researcher made the papers as obviously fake as possible on purpose. The AI systems didn't catch it. Neither did the human researchers who cited it in real journals, which means people are feeding AI-generated references into their work without reading what they're actually citing. I've covered the FDA using AI for drug review, the NYC hospital CEO ready to replace radiologists, and ChatGPT Health launching this year. All of that is happening in the same environment where a condition funded by a Simpsons character and endorsed by the crew of the Enterprise was being presented as emerging medical consensus. The people making these deployment decisions seem to believe the pipeline from research to AI to patient is more supervised than it actually is. This experiment suggests it isn't supervised much at all. Hedgie🤗 nature.com/articles/d4158…

@erikmoldwarrior @TweetingTimo Many also deteriorate over time even though they experienced improvement for short periods of time during this.

@TweetingTimo When you discuss treatments in terms of efficacy, also bear in mind that many improve over time no matter what treatments they did.

I have an upcoming interview where my improvement with ME/CFS will likely be discussed. It’s important to me to also highlight those who haven’t had the same luck. Any tips on how to address this thoughtfully?

This is a special kind of friendship that can stay with you for a lifetime. When Tony met that little robin, he never expected they would bond for so many years 💖✨ But after years together, Bob suddenly disappeared. To honor him, Tony wrote a book titled ‘Bob the Robin’ — like a love letter to the bird and his affection for robins. After that, Tony continued making friends with other robins. 📹putman_and_robin

#MECFS #PwME

#MECFS #PwME

The response to #DownTheRoad has been electric !! And this is only the first dose of the #Inpatient album.. Welcome to the #Asylum 😈🕸 LINK : inpatient.lnk.to/DownTheRoad

Someone made a deal with the Devil. #DownTheRoad from @ChrisWebby x @Renmakesmusic is out now. 😈 inpatient.lnk.to/DownTheRoad

#DownTheRoad is only the beginning .. me and my brother @Renmakesmusic are just warming up .. #Inpatient is officially here and ready to welcome yall to the #Asylum .. buckle up 😈🕸 LINK : inpatient.lnk.to/DownTheRoad

@DafoeWhitney I have not seen your videos for a while so I was pleased to hear your voice even though you were letting us all know about this latest set back for you. I am so glad you have had the opportunity to look out of that great big window in your room, Sensed the joy this brought you.

In The Hospital In January this year I spent 3 weeks in the hospital for a serious infection and related conditions. My experience there was at once a surprise and a discouraging setback that added to my symptom burden. In this post I relate my experience and thoughts on what it means for all of us. Read the whole piece on my blog or watch the video above. 💙 whitneydafoe.com/mecfs/?post=in… #mecfs #chronicillness #pwME #LongCovid

#MECFS #PwME #MillionsMissing

When someone you love offers a bid for connection, you say yes every time. When someone sends you an article, a video, a funny post, it’s a bid for connection. They are trying to connect with you. When someone shares details about their day, their life, their thoughts, or their feelings with you, that is a bid for connection. They want to connect with you on a deeper level. They are trying to pull you into their world. If you love them, you say yes every time. Yes, even if the article they send is not particularly interesting to you. Yes, even if it means listening to them ramble about a game you don’t care about and think is stupid. Yes yes yes. And let’s hope they always say yes to your bids, too. — Unknown