Through these endless days of suffering I remind myself that we are nothing but children of the stars, literal stardust set ablaze but for an instant into the infinity of cosmic time. Every layer of our soul laid bare until only the rage against the dying of the light remains.

I so love this kid. For as horrifically limited as his daily life is, he has a remarkably good attitude and makes the most of the windows where he has the energy and clarity of mind he so desperately wants more of. Bless him and the others suffering with #longcovid or #mecfs

Hey people. I’m not doing too well. Pain is beyond hell, exhausted to death. Not sure how long I’ll last. Sucks we had to get sick from a taxpayer funded virus. . Not that anyone reads what I write or cares about me but I guess I’ll be gone for a while, somewhere. Take care. #LabVirus

This platform is completely overrun with so much AI slop. Any real humans out there ? What is a human anyways at this point ?

The immune systems of people with long Covid may remain locked in a prolonged battle with remnants of the coronavirus, producing inflammation while failing to effectively eliminate its source, new research suggests. bloomberg.com/news/articles/…

Many, many people, are wasting money on unproven “treatments”, desperate to find a cure to their long Covid. Trying random drugs, trying combinations of random drugs. Trying nerve blocks & more. I get it. Long Covid is life changing. But everyone deserves better than this…

Breaking: New Study Reveals Substantial Tissue-Level Immune Dysfunction Near Persistent Viral Reservoirs in Long COVID 👉🏻PolyBio-funded UCSF research finds persistent SARS-CoV-2 RNA alongside an altered gut immune response that may impair viral clearance 1/

It's time ... Purposeful post exertional malaise. @IsabelRamirezRD @KatBoniface @novasupport are doing stairs for science. At #InnovationInn, 5 of our team members are purposely inducing PEM to study it. We've biobanked over 150 baseline pre-PEM samples already. Tomorrow we expect that most of us will be experiencing PEM and we will continue to collect as much data as possible to try to find signals to follow up on with larger studies.

Summer has not been kind to many, and hundreds of people have joined the COVID-19 Longhauler Advocacy Project’s Facebook Group since June to learn about and seek support for #LongCOVID. facebook.com/share/g/1Jh65b7…

We’ve launched! #ChronicleBio is building an AI-ready data platform for neuroimmune disorders like #POTS, #MECFS, #LongCOVID & more. These conditions affect 250M+ people but remain under-researched. We’re here to change that. 🔗 chroniclebio.com/news/mergin… #Biotech #HealthAI

While AI gives me a lot of hope to find cures for complex chronic conditions like mine, this potential will only be realized if we get enough biological data to understand the mechanisms of these conditions. That’s what we’re trying to do at @ChronicleBioAI: fortune.com/2026/08/03/fidji…

Today, I shared with the OpenAI team that I have decided to leave my full-time role at OpenAI and transition to being a part-time advisor. Three months ago, I had to go on medical leave after a severe exacerbation of a chronic illness I’ve lived with for seven years. During that time, it became clear that the road to recovery would be much longer and more complex than I had anticipated—and that I needed to focus on it fully. When I went on leave, many people told me I was courageous for prioritizing my health. The truth is that I am only making this decision now because I failed to make it many times before. Over the years, doctors, friends, colleagues, and loved ones encouraged me to slow down. Two years after I got sick, Facebook offered me the opportunity to take a full year of medical leave. I didn’t even pause to consider it. I immediately said no. At the time, Zuck told me I should play the long game. I wish I had listened. Looking back, I realize that a lot of what made me successful also made this decision incredibly difficult. I grew up believing that opportunities were precious and that when they appeared, you grabbed them with both hands. That mindset carried me from a small town in southern France to opportunities I never could have imagined. By the time I turned 40, I had already gotten to do more than I’d ever dreamed possible as a kid growing up in Sète. I love building. My work has always given me a deep sense of purpose. OpenAI in particular felt like a role that my entire career had been building toward, which made this decision even harder. But what I’m learning now is that grit and endurance are not the only skills required to have impact over decades. Sometimes the harder thing is to stop, listen, and trust that taking care of yourself today makes it possible to contribute for much longer tomorrow. This experience has also strengthened my conviction about why this work matters. It has been a jarring experience to spend my days helping build the future while simultaneously navigating a disabling disease that still has no cure. Over the last seven years, I’ve spent countless hours in doctors’ offices, dealing with symptoms, treatments, insurance, uncertainty, and all the invisible work that comes with being a patient. Like millions of others living with chronic illness, I’ve experienced firsthand how difficult healthcare can be to navigate, even when you have every possible advantage. More than ever, I believe that some of the most important opportunities for AI lie in helping people solve real problems in their daily lives: their health, their finances, their time and the everyday burdens that shape human experience. In particular, curing disease is the most important thing AI could accomplish. I’m excited to continue working towards cures through OpenAI but also through my work with @ChronicleBioAI and @CODA_research. I’m deeply grateful to @sama, @gdb and the OpenAI board for their support during this time and for offering a way for me to continue contributing to the mission without sacrificing my chances of recovery. I’m also so thankful to my team and the many extraordinary colleagues I’ve had the privilege to build alongside. For now, my focus is recovery. But my belief in the potential of technology to solve deeply human problems has never been stronger.

RT @TaylorLorenz: “If you look at a condition like [ME/CFS], it is considered the most disabling disease of all diseases. When you look at…

#SevereMEweek A glimpse into some of the reality.

14 year old Hayden has been bedbound for 2 years since contracting #Covid His mum describes and compares his neurological symptoms as being similar to vascular dementia 💔🥲 Absolutely devastating that children are being harmed by an airborne virus which could be prevented!

Hello I am writing this on behalf of Lisa. She Wanted me to tell you that she is trying to discuss with her gp some sort of Tube feeding. Her Situation is worse. She can Not Really use her phone anymore and I should let everyone who was in Contact with her know she tried. #MECFS

Just saw this (late) but really beautiful video exposing what we’ve all lost. Thank you whoever made this.

📢 New funding opportunity in ME/CFS research. The WE&ME FOUNDATION has launched its first independent Call for Proposals to support research on the biological mechanisms of ME/CFS. Applications will be evaluated by an independent international expert jury. More information: weandmecfs.org/weme-projects…

We're currently in the process of making a website where you could upload a self-taken capillaroscopy image and get key features quantified. In the meantime if you want to send me a photo I can tell you what I see by eye, though my eyes are not as good as what we're building.