Existential Bread

1/ First attempt at a thread about chronic illness (mostly ME/CFS or LC), and what it feels like to try to maintain friendships, life, and existence. Maybe some will identify. Maybe you can send to someone to explain how it feels (who sadly still won't truly understand).

Even most of my friends eventually feel like, "So have you just given up?" Well, we could talk about my trials of mast cell stabilizers or antivirals or immune…oh wait, they're already bored. I don't expect them to be interested in the details (I wouldn't be if I weren't living it), but frustrating that if we don't have a one-sentence "da doc said I was gettin' the meds" then they think it must be our fault.

People start getting angry when your illness doesn’t improve. Eventually, you stop being seen as someone who is sick and start being seen as an inconvenience, even a source of annoyance, to people who don’t even know you.

@kirstymecfslife The only things that felt similar to my everyday now from when I was healthier: aftermath of food poisoning, and heat exhaustion/heat stroke. For me, heat exhaustion/heat stroke is what comes the closest. The fog, disorientation, temperature dysregulation, exhaustion, weakness.

@saffronandsky I like to think my rambles are eloquent. :(

I really hate it when I read a post by someone I follow and generally like, and I can't tell if it's written by them or an llm. I really hope people aren't using llms to make posts, because I'd rather have people's sloppy ineloquent rambles... Or maybe people are just starting to mimic llm's. Idk.

And the well-meaning Medical Loss Ratio creates more perverse incentives - a larger healthcare cost base can mean more money in their pocket even without increasing margins. And really at a certain point, they're not incentivized to reduce costs if they're near the ratio's floor. We've created the worst (and most complicated) of all worlds.

So true. But don't forget your peer to peer is with someone who may or may not be a doctor, that works for a company, that was subcontracted by a company that was subcontracted by a company that was subcontracted by your insurance carrier for the sole purpose of denying care so the carrier can charge the employer for as many appeals as they can , hoping that everyone gives up so that they can tell the employer, whose CEO has no idea that the carrier they hired is doing this, that they saved them money @pmarca has anyone at @a16z ever gotten a report showing the impact of denials on the health of your employees ? I already know.

@dieworkwear @nikitabier Also, sometimes the accounts saying inciendiary things and funded by foreign organizations who want to divide Americans…also have an (R) or (D) by their name and the State they represent. :(

@nikitabier Interesting, thanks for the reply.

the one conspiracy i believe is that this place is full of bots programmed to say insane, incendiary things and they're funded by foreign organizations who want to divide americans and destabilize US society

@nikitabier @jrwtyndall @dieworkwear I'm gonna start selling free-range fair trade Berkeley residential IP addresses.

@jrwtyndall @dieworkwear Sadly, yes. Deranged liberal takes: Portland & Berkeley IPs Deranged right-wing takes: Ohio IPs

I criticized Democratic politicians extensively before the last Presidential election - I had no problems at all. I criticized Republican politicians extensively during the OBBB and called out specific lies with proof - I got flagged for 'spam-like' behavior and my account views and visibility dropped off a cliff (no appeal available - just a warning pop-up on platform). I also was flagged for 'hateful conduct' for pointing out the WH laughed about the 'gay plague' during the early days of AIDS, but I appealed and that was restored (criticizing Fauci and a Republican admin, so maybe your own bots didn't know how to handle). Maybe the last 3 months are better and less obviously biased. I finally logged back in and paid some money to see if that would take away the throttling. But last year was a shitshow and pretty much moved me off the platform entirely as you minimized and disappeared much of the disabled and chronic illness community.

When I first started at X, this is one of the things I did a deep dive on because I felt it was critical to the integrity of the experienced. I tasked our Threat Disruption team to investigate a number of trends that seemed artificial. The findings: We could not find meaningful examples of foreign interference in US policy discussions, except people gaming rev share in developing countries. This is what motivated the release of the Country of Origin feature and significant changes to the rev share algorithm. The most deranged & divisive replies generally were from residential IPs in the United States—with no signs of using a VPN. Ultimately, X is a reflection of the internet. And that means you will see the full spectrum of human thought. And sometimes the most outrageous takes will catch fire. Having said all of this, there can still be cases of narratives being boosted but the origin of the initial post is almost always domestic and we have hardened our systems in the last 3 months to prevent this.

I'd say not just tech journalism - look at the other genres of mags in Conde's portfolio pre-2010 and post-2011. But I was definitely casting aspersions on WIRED. :) Haven't worked with them in many years and don't know Drummond, but their weird pseudoscience-filled 'Painful Truth about Long Covid' article was contrarian engagement farming at its finest, and it will harm patients for decades to come. A bit more 'relevance' doesn't offset that damage.

I cast no aspersions on WIRED here. (The object of the OP’s initial gripe.) I think global editorial director Katie Drummond is doing a good job making Wired relevant again. I’d like to see more of the core tech and science coverage expanded, and I hear that’s the plan. But, yes, in general the whole enterprise in tech journalism fell apart rather.

It’s continually shocking how illiterate most people in tech are about the media. This entire post is such a complete misread of the tech media landscape and reveals the OP’s utter ignorance of the tech media that’s out there.

I worked in that space (including for WIRED) through the 2010-2011 shift, and all publications were (and still are) floundering to some degree. The landscape shifted, social media exploded, business models fell apart. That said, WIRED and Conde in particular have done a poor job. By the time I stopped working with them, the editor churn was somewhat ridiculous. Initially, I knew WIRED as the publication that would devote serious space to epic and detailed descriptions of deep sea cable laying. Now they have religion professors write vaguely about 'brain retraining' and what 'they' don't want you to talk about. It's not necessarily always negative or hateful, it's just clickbait desperation. Same with the positive stories - clickbait…about the two supplements that might add a decade to your life!

Former editor in chief of three tech publications over 20 years here. At some point, as tech became the comparative advantage of the US economy, and a major political power in its own right, tech publications and the mainstream media, did, in fact, become reflexively critical and antagonistic to tech companies—and tech media declared war on their own audiences. This shift may have been over-determined and have many causes—SV’s libertarianism became less romantic and counter-cultural as media and journalists became more progressive; media became poor and precarious at the time that tech got rich and triumphant—but it was a real falling-out. I saw it myself.

Some illnesses don’t get better. Some don’t have treatments that work. Disabled people aren’t failing because we’re still sick. Sometimes we’re just living with conditions medicine cannot fix.

@Gmwetz @kirstler31 Good to know. I've discussed it with one of my doctors and have considered doing a very careful titration. How long did it take for you to notice the boost and then the crash?

@exist_bread @kirstler31 I am very sensitive to medication and also very very cautious. But I tolerate it well and started very low at .1mg There is always a big risk for side effects but the risk seems to be dose dependent as well. But of course- it is not zero

I am too ill to read or understand this but could it explain why low dose abilify works so amazingly well for some? It seems to be the one med that can make the most impact.

Having dealt with @Citi for too many years before I escaped, this surprises me not at all. If it makes you feel better, they suck even with their own money. They accidentally lost $500 million of @Citibank money because of bad UI and outsourcing. Typical. arstechnica.com/tech-policy/20…

Shame on @citibank for allowing a loophole to auto-approve charges under $15 -- allowing a thief to rapidly fraudulently charge $14 to my wife TWO THOUSAND TIMES. Really, your system can't detect that a thousand repeated charges might be fraud?

@kirstler31 @Gmwetz It's been on my list for awhile since anything that involves enjoyable concentration tasks crashes me horribly. Yet some of the side effects sound pretty bad, and persistent. Medications that change brain chemistry make me pretty cautious.

@exist_bread @Gmwetz Urgh. It can also cause brutal side effects. It’s my last chance try but I’m pretty terrified of it lol

@Gmwetz @kirstler31 Some patients report LDA working but then stopping, or crashing them, etc. Yet when I talk to doctors who prescribe it, they'll say they've only heard of it being helpful or doing nothing, which doesn't inspire confidence that they're actually listening to their patients.

@kirstler31 I am currently at .4mg Had a short boost at the beginning and then crashed

Doctor’s appointments make me feel like I’m on trial for a serious crime.

@thsottiaux What is the qualitative difference usually between Sol Medium and High? For 5.5, I usually found High was the sweet spot for most of my tasks.

I recommend using GPT-5.6 Sol Medium as your daily driver, and for really hard problems to switch to Extra High. If you want the absolute best and are not afraid to burn usage fast, then Ultra is a beast.

These diseases are extremely debilitating; for example MECFS has a higher burden of disease than most diseases, yet is critically underfunded.

@candlelovers12 The GERD improvement is huge. I'm looking at trying it, and reflux is one of the things that always precedes my crashes and is just a daily horror. Any negative side effects of it? What dosage?

🧵 Random shit Mestinon (pyridostigmine) unexpectedly helped me with - chewing. my jaw has not "run out of energy" since I started taking it. Also less tracking - My GERD resolved by 80-90%. it was severe. I was taking PPI twice a day and before(and was still severe). 2)...

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.

There's no 'right' answer because opportunities *are* precious, and there's no guarantee of navigating a chronic illness or any of those opportunities coming around again. I pushed through numerous times, and eventually destroyed my health. Yet my health might've been destroyed anyways. I would've made different choices knowing how things played out, but that's easy to say once you've already lost. Medicine has little guidance for pacing, doctors and others often ignore or dismiss long term or permanent damage, and chronic illnesses (particularly invisible ones) can be hard for others to understand, and hard for us to accept ourselves. I've spent decades as my health declined, trying to make the best of it, recalibrating my goals, trying again, failing again. I had some great experiences and opportunities, but always through the lens of pain and loss - all the things I couldn't do purely because of physical limitations. One of the reasons I support AI is that I think it is our *ONLY* hope of solving many of these chronic conditions in many of our lifetimes. We are not even close to addressing many - beyond etiology, even diagnosis is often hand wavey and dependent on your resources and belief more than a definitive lab. Not sure what you're dealing with, but I wish you the best of luck. And to others watching who are lucky enough to not understand fully - whether you are building the future or living in the present or mourning a past you never got to experience - many people's lives are impacted not because they made bad or irresponsible choices, but purely because of genetics or bad luck.