Research engineer. In recovery from complex chronic illness. Working on a memoir. Other interests: history, philosophy, fiction, chess, socialism
San Francisco, CA
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I ordered 20 N95 masks and received what appears to be several hundred N95 masks. I interpret this as a message of general encouragement from the universe.
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CHOTINER: It’s a nice little library you’ve got here, nice selection.
Me: Thank you.
CHOTINER: You take great care of these books. So many spines in mint condition.
Me: [visibly perspiring]
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If only I attain your level of enlightenment, I too can aspire to spend my sixties trolling on Twitter.
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Today was the day San Francisco hit its highest COVID wastewater concentration of the entire pandemic. (SF Chronicle data, average of the two facilities)
Close to a million Americans killed under Biden.
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I’m numb to it but it’s wild that COVID is almost as rampant in SF right now as at the peak of Delta, and if I get it it will devastate me, and almost no one knows, and if they knew they wouldn’t care, and if they cared they still probably wouldn’t bother to mask
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I started dating someone who also has ME/CFS and it has resulted in us both improving physically, which I think is beautiful
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Seeing a lot of people I liked on here punching down at vulnerable people begging for Covid safety. Meanwhile there’s a constant stream of terrifying Covid research which you are not aware of unless you are following very closely, and we just lost the five-day isolation period
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Tomorrow I am going back to see the neurologist who tried to diagnose me with FND (functional neurological disorder) in June. I’m going to tell him how disastrously wrong he was, and that I’m recovering because I figured it out on my own.
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The Western paranoia about “psychosomatic” illness is actually an inversion: in fact we are rapidly uncovering the physical roots of mental illness. As the Enlightenment project of mastery over nature fails, our science increasingly conflicts with our ideology.
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How can you be a remotely competent historian without recognizing that major events in human history are shaped by people who are physically double the size of everyone else, like Darius in the Behistun Inscription
Like how can you be a remotely competent historian without recognizing that major events in human history are shaped by high IQ, high-agency people who are bad and/or flawed and/or dangerous.
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There are many people on “the left” whose only engagement with Covid is to occasionally quote tweet something and claim it as evidence that everyone who is Covid-conscious is a terrible person
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Me too. I have been wearing Auras throughout the pandemic and have completely avoided COVID so far (unless I had an asymptomatic case at some point)
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I don’t claim anything like full recovery but life has gradually become more normal. I can work full-time again. The reason I’m talking less about chronic illness is not that I don’t care anymore, it’s more that I’m traumatized. It’s genuinely more difficult for me to
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ME/CFS is literally more than 100 times more common than FND. But this misdiagnosis is extremely common. It’s also extremely damaging. It prevents people from accessing the care that could give them a chance to live again.
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I’m going to present to him the facts about ME/CFS, which contradict things that he told me, and tell him that if he doesn’t inform himself he’s going to keep destroying lives, just like he’s been doing his entire career.
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Center for Complex Diseases told me that 25% of their ME/CFS patients fully recover in two years. In the general population only 5% ever fully recover. This is the difference between competent care and the currently existing medical system.
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I think the salient point is not that individual historians, philosophers etc. are good (there’s much evidence to the contrary) but that we need some percentage of the population to be trained in these things. Reagan understood this and tried to stop it.
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Health update: making rapid progress on MCAS and SIBO symptoms suddenly. Together with bloodwork, this suggests my immune system is making a strong recovery. ME/CFS symptoms stable at mild, or improving slowly. I’ve cut almost half of the supplements I was taking.
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“I’ve seen this a lot,” he told me. I think often about the people who took him seriously when he overlooked their immune dysfunction, gut dysbiosis, mitochondrial disease, and other pathologies of ME/CFS. They never got the chance that I gave myself.
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In one week I’ll be redoing PICL, the stem cell treatment for CCI (craniocervical instability). The first time I did this (a year ago) it was the most impactful thing I’ve done in treatment so far. I’ve improved from moderate to mild/very mild ME/CFS,
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Guide to buying masks in bulk, shared with me by @zachbraff1998 docs.google.com/document/d/1…
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I know this is a luxury problem, and I am still not close to 100% recovered from ME/CFS. But I am struggling with survivor’s guilt.
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This went as well as I could possibly have hoped. I was less inflammatory than in my posts but I presented my story and my viewpoint firmly. He said he was glad that I updated him and that he would read and learn more.
Tomorrow I am going back to see the neurologist who tried to diagnose me with FND (functional neurological disorder) in June. I’m going to tell him how disastrously wrong he was, and that I’m recovering because I figured it out on my own.
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I ordered 3M Auras on Amazon. This appears to be a mistake made by a third-party seller. (I know you’re not supposed to order on Amazon because of fakes but I always get individually wrapped Auras and I think I could spot a fake)
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There’s a term of endearment that pops up often in Plato, βέλτιστε. It’s translated as “my good man” etc. But it literally means “bestie” and at some point it gets frustrating that no one will select the obvious and correct English translation
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Hmm. I agree doctors have been “let down” but I would stop short of calling them “victims”. Ideally doctors would be up to date on research, but I would settle for them being honest about what they don’t know. But many fail to clear that bar.
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The state of ME/CFS research: 8 years for a study on 17 patients, using outdated diagnostic criteria, with multiple design flaws, apparent ignorance of prior work, and an unreported conflict of interest. We need journalists to report on the malfeasance at the NIH.
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I am participating in the first cohort of patient-led medical research trial @remissionbiome. There is no FDA-approved treatment for ME/CFS and little research funding. It’s inspiring to see cutting-edge research being bootstrapped by patients (with science PhDs) like this.
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I have gone up to 2g oxaloacetate / day. This is expensive but it’s supposed to be one of the most impactful supplements for ME/CFS.
My current supplement regimen costs around $2000/month. About half of that is just for Prodrome Glia + Prodrome Neuro + oxaloacetate.
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think and talk about it the further removed I am from the nadir when I was at the utmost extremity and it really felt like I was dying. I’m still working on my book project but this has been a real issue for the writing. It takes a toll on me to revisit that.
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I am beginning to compile the many irregularities in the recent ME/CFS study published by the NIH, with a view towards doing something like this. If others are doing this work too I would be thrilled to collaborate.
We need to build a coalition of researchers to publicize the fact that it was not just a bad paper, but constituted premeditated research misconduct. Like any other case of research misconduct, it should follow everyone involved for the rest of their careers.
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I am still steadily getting better. My conviction is growing in my thesis from six months ago, that I can recover or mostly recover by treating CCI and mold toxicity. I very rarely get PEM anymore.
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I’ve improved more than I thought was possible four months ago. Normal life looks attainable from here. But I’m barely allowing myself any positive emotion because the danger of backsliding is so serious and will be lifelong. #MECFS
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I went back and confronted the neurologist who tried to diagnose me with FND. He was receptive and promised to read up! But he also said something like “we make mistakes, that’s why they call it ‘practice’.” No recognition that it’s a systemic issue and I didn’t press the point.
Urgently looking for someone w a medical background & knowledge of #FND, supportive of #LongCovid community to speak to...we've a huge no.of LC patients being diagnosed with FND here in Ireland & I need to understand more about the science the neurologists are..
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We need to build a coalition of researchers to publicize the fact that it was not just a bad paper, but constituted premeditated research misconduct. Like any other case of research misconduct, it should follow everyone involved for the rest of their careers.
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We both have extremely well documented and verified physical illness, and we’re both highly educated and informed about it. We’re not susceptible to gaslighting like this individually, but we’re even stronger together :)
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After I got the mold toxicity diagnosis, threw away everything I owned, moved, started a hugely complicated treatment protocol, and partially recovered, I went back to my primary care doctor (who spent two years telling me I was fine as my health declined) and told him about it.
The last 2 weeks I’ve found huge hidden sources of black mold at both my workplace and my house. Not only has black mold totally ruined my life to the point where it sucks complete ass, but it’s also really hard to talk about without coming across as schizo.
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2019: the vibe is shifting. Things are about to get weird
2022: minions is the only gift of pure art in America
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Many parallels between Covid and climate change but the most personally aggravating to me is people’s unshakeable faith that if scientific research indicated serious danger then they’d be hearing about it on MSNBC
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I see some commonalities between the articulation of “psychosomatic” illness and the “exponential curve” school of AI prognostication. It’s all idealist metaphysics: systems are not connected, consciousness is prior to the body, capital produces without labor,
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I’m very tired. I’m working full-time again in a demanding research position, still trying hard to regain my health, and dodging COVID which can set me back at any time. And I’ve been working seriously for years to reach a deeper understanding of the ongoing, overlapping crises
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I totally floundered in my illness before I found the ME/CFS patient community.
Patients collectively know so, so much about chronic illness. There couldn’t be a stronger incentive to experiment and learn.
Unfortunately sharing this knowledge with doctors is a huge challenge.
over & over i'm finding doctors really don't like the fact that i'm having success with using antivirals for Long Covid. when i say that a lot of people are having success with them they don't listen or show any curiosity at all. can't possibly be true, must be placebo, at best
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This is the director of the Forbes Norris Research Center under CPMC. Also the President of the ALS Research Group. He absolutely should have known much more than he demonstrated to me.
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and the extravagance of the core does not depend on the periphery. It’s a classic repression of the Real, culminating inevitably in a return of the repressed. A blindness to the material leads to material ruin.
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Fear is what's "unhealthy", huh?
I personally know multiple young, previously fit people who became unable to walk or care for themselves because this virus destroyed them. That sounds more unhealthy than fear does to me.
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Bl****y is growing but it doesn’t have accounts with a million followers who are explaining that the fires started because UFOs hit California with the Havana Syndrome gun. For that, you have to go to X, the everything app.
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When I was 17 I briefly wanted to quadruple-major in math, literature, history, and philosophy and those have been my interests more or less consistently since then. I correctly ID’d the good stuff
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In 250 AD the roads were still in great shape while culture and creativity had been totally extinguished.
We rationalize our decision as choosing to live in the ruins of a once great civilization -- like Rome in maybe 250 AD, we live amidst an enormous flowering of culture and creativity, but the roads are becoming unsafe and nobody is quite sure why.
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This is blowing up a little bit and I’m starting to get attacked. For context I have ME/CFS which means I run a serious risk of permanently worsened disability if I get COVID.
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Saw a physician’s assistant today to go over some labwork. She went out of her way to say that what I’ve gone through is extremely difficult and that I’ve done a good job figuring it out. First time I’ve heard that in a medical setting and I really appreciated it.
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Writing to the US Chess Federation to tell them I followed their instructions and got disqualified from my blindfold chess tournament
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I now have an obligation to help more, and there are things I promised to do that I’m not doing. I hope this will change, but now that I’m working again that is pretty much taking everything I’ve got.
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@SFGate quickly changed their headline here to use vaguer, more neutral language. I would be very interested to hear about the process behind that decision.
"COVID is coming for Calif., and it’s already hitting the Bay Area the hardest... some of the highest concentrations we’ve ever measured"
👀
h/t @kfairwrites
sfgate.com/bayarea/article/c…
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I gave a quote for this piece on the recent NIH study on ME/CFS. In my view the study was something other than scientific research. The NIH is not interested in understanding ME/CFS and long COVID, it’s interested in burying them.
The Sick Times: 'Errors, omissions, potential bias: Why some ME experts are calling for a retraction of the NIH intramural study'
'Vastag..agreed that the language likely came from Walitt and said that the ME community was right to be worried about him..'
thesicktimes.org/2024/03/19/…
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Sure, he’s just following orders. But historically that has not meant much in the way of absolution.
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I did decide to attempt a return to full-time work. I’ve accepted a research engineer position with the Astera Institute, exploring pathways to AGI via deep reinforcement learning.
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He told me to my face that the existence of mold illness is controversial.
It’s hard not to go a little bit insane. This is one of many rapidly worsening environmental toxicity problems we are trying our hardest to ignore at a societal level.
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“Stable societies”, “cultural identity”. Just call yourself a fascist and you will truly feel so much better.
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What I accomplished this year: correctly self-diagnosed my severe chronic illness, started treatment, experienced post-traumatic growth, wrote a (privately circulating) memoir, didn’t die. And that’s it. It was one of my most productive years.
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Yeah this did occur to me and must be a factor. Probably the biggest component of selection bias is that the people who can afford CCD can also afford to actually rest. But I believe that CCD’s very thorough diagnosis of treatable comorbidities etc. makes a huge difference.
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For many years China has shown incredible patience, discipline, and restraint in the face of American provocations. Amazing to see Americans so unaware of that that they do not even register this as a rhetorical shift.
If war is what the U.S. wants, be it a tariff war, a trade war or any other type of war, we’re ready to fight till the end.
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It’s barely even a news story anymore when major US cities are without power or clean water.
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I eventually became very assertive and started firmly correcting false statements from doctors. I can generally get away with this, which is probably more often the case for men and especially white men.
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This is misguided and harmful. I’m all of these things too and have had similar experiences. But I recognize that it would have been even harder for me without these advantages.
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Saw someone at UCSF Spine Center who called my presentation rare. I challenged her (CDC says 1.3% prevalence in adults) and she immediately admitted her sister-in-law is being evaluated for ME/CFS.
She used the word “niche”. I told her treatment is niche but the disease is not.
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I do literally have PTSD from seeking diagnosis and treatment. What I experienced went beyond neglect and incompetence into what I would call “institutional abuse.” Doctors not only do not help, they add to the burden of the disease.
My old brain could have written a better thread, but here we are. We deserve better, and the things I dream of as an ME patient are just having basic awareness and respect so that getting this disease doesn’t also mean you get PTSD.
#JohnVsJonVsME #GreatestMEdicalScandal
ALT Photo of Dr. Nancy Klimas in a white lab coat sitting at a table with test tubes. Text: I’ve had patients who met the post traumatic stress disorder criteria, where their trauma was their interaction with their physician around this illness. They came to a doctor with ME/CFS; they left the doctor with PTSD.
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Turning off comments because I don’t want to spend all night fighting with shitheads. The level of misinformation on COVID is getting to me—even on “the left”, even from virologists, epidemiologists, and others whose failure to know any better is beyond my power to explain.
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It’s been about seven weeks. My feeling is that my CCI is “mostly resolved” now. (I am likely to still repeat the procedure to see if I can get to 100%.) ME/CFS symptoms are significantly improved. I don’t think I would have been able to return to work without this.
Tomorrow I have my PICL procedure at the Centeno-Schultz Clinic. Here's a brief explainer about what this is. I have a condition called craniocervical instability (CCI) in which the ligaments that attach my skull to my spine are damaged, so my skull is not stable or supported.
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and no longer even think of ME/CFS as my main problem. But I find it troubling that my neck has been deteriorating slightly for the past few months. I’m not going to be able to do this procedure every year if that keeps happening. We’ll see how it goes.
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Early in pure math grad school I said to my office mate that it didn’t really feel like the right century to go into pure math. It was a joke but it became real to me within a few years
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Tomorrow I have my PICL procedure at the Centeno-Schultz Clinic. Here's a brief explainer about what this is. I have a condition called craniocervical instability (CCI) in which the ligaments that attach my skull to my spine are damaged, so my skull is not stable or supported.
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Was asked today how my relationship to work changed after severe illness. Very good question! When I was too ill to work I was absolutely hellbent on getting my career back. This actually led to a bit of a letdown when I achieved that and big parts of my life were still missing—
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We are at the three-month mark. I had my follow-up with Centeno-Schultz and they think I have improved enough that further intervention is unnecessary (beyond some PT which I’ve been neglecting). I was one of the lucky 20-25%; PICL was successful on the first try.
It’s been about seven weeks. My feeling is that my CCI is “mostly resolved” now. (I am likely to still repeat the procedure to see if I can get to 100%.) ME/CFS symptoms are significantly improved. I don’t think I would have been able to return to work without this.
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More people need to be aware that there was an ocean temperature tipping point and it happened in spring 2023. More tipping points are coming and we do not fully understand what they are and how long we have.
It's mid-April. Time for some seasonal cooling.
El Niño is ending. Time for some interannual cooling.
Nope. Let's set a new record high for daily ocean-average surface temperature. 😬
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After returning to full-time AI work for nearly a year I’ll be taking a sort of sabbatical for about six months, starting soon, to focus on completing a memoir about the catastrophic failure and partial recovery of my health.
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Every former founder who is now in a prison cell had almost these exact words written about them
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It is a huge leap to draw conclusions about LLMs and natural language from a transformer used for chess. Chess is much easier from a computing perspective than natural language. It’s a game with rigid rules, determinism, and no ambiguity.
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I believe that some people indulge in casual cruelty as a consolation for a decline in their quality of life
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17 days in. I have now gotten rid of virtually all of my worldly possessions. I am in an Airbnb until April. Physically I am improving quickly so I plan to rent an apartment in SF after that and hopefully return to work by fall 2024.
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Painful is the transition from “I am” to “I was”. I was a machine learning engineer, athlete, literature and classics enthusiast, activist, chess player. Most of that has been stripped away now. #MECFS
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CCI improved for me to the point that repeating PICL is not indicated. But I still have some instability, so I’m prioritizing physical therapy now.
I’m doing things like using a laser pointer attached to my head to write words in cursive on the wall.
It’s been about seven weeks. My feeling is that my CCI is “mostly resolved” now. (I am likely to still repeat the procedure to see if I can get to 100%.) ME/CFS symptoms are significantly improved. I don’t think I would have been able to return to work without this.
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I was asked why I was wearing one. I gently explained the risk of permanent decline from COVID infection. She said “thanks for sharing.”
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I have MCAS, ME/CFS, and CCI. It was unbelievably difficult to get these diagnoses. It took a lot of persistence, a lot of research, and a lot of money to get to the right doctors. There is no way that these conditions are overdiagnosed rather than underdiagnosed.
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It feels like there’s something new every day! But two that I have in mind:
1. Covid viral reservoirs in bone marrow
🚨🚨🚨This paper explicitly suggests that viral reservoirs in bone marrow must be to blame for mitochondrial dysfunction in lymphocytes, monocytes, NK cells, dendritic cells. This would be why the complement system is wacked. This is a big deal.🚨🚨🚨
sciencedirect.com/science/ar…
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