Laura Logan

@NeleHelena This. Thanks for mentioning it.

I miss wearing daytime clothes. My clothes were never anything special, but it made me feel so normal. This was at a previous level of severity.

@alexandrite113 Meant to say “sorry” about no reference. Things kind of drift away on me.

@LoganSTL1 Thank you

my sensitivity to chemicals & scents is increasing every day. just opened an acetone-free nail polish remover and immediately gagged and almost threw up. soon i'll have to live in a fucking bubble. my cognition and migraines are getting worse too. everything makes it worse

@Bert_with_ME @JacobTref @sama I’m from Clayton MO, with ME. We need help. Your AI pieced together a root cause for me, but we need major help. It’s just within reach….

Hi @JacobTref I'm joining the chorus of voices urging you to look into ME/CFS as part of your focus at OpenAI Foundation. The story of this illness is utterly fascinating. Cases began cropping up in the early 80s around the same time as HIV/AIDS. Patients who were previously healthy and productive became profoundly sick with immune-mediated and neurological symptoms, rendering them disabled and unable to care for themselves or their families. Their illnesses dragged on for years and decades, and the vast majority never recovered. Because 3/4 of the patients were women and their routine bloodwork returned mostly normal, certain doctors and govt officials began psychologizing the disease, casting the patients off as neurotics, depressives, and malingerers. And yet, more and more people acquired this devastating mystery illness as the years went on. By 1990, the only illness that generated more calls to the CDC was AIDS. 40+ years later, ME/CFS is recognized by medical authorities as an organic neuroimmune disease that affects ~2M Americans, and yet the layperson is not aware of its existence and NIH funding remains comically low at ~$13M (i.e., $6.50 per patient...). There are zero FDA-approved treatments, no cures, and very little hope in this community. An ME/CFS diagnosis, as I received 8 months ago, is essentially a lifetime sentence of profound illness and disability for the vast majority of patients. With the resources of the OpenAI Foundation, you have an opportunity to bring progress and hope to a cohort of sick people that have been all but ignored and forgotten by government institutions like the NIH. I hope you'll consider digging in.

@alexandrite113 Saw your post on aphasia so looked at earlier posts. I have ME and chemical/odor sensitivity. Using Chat last week I pieced together the cause of both: low ATP. Haven’t shouted it on X as idk how. But my heart broke when I read your post. Struggling to find the backup, google it

@sama Hey @sama I am from Clayton and wanted to thank you for your AI, which recently uncovered what I believe to be the root cause (low ATP) of ME Myalgic Encephalomyelitis (often labeled ME/CFS) one of the worst, unrecognized medical conditions. I have it, it’s bad.

More details here: openaifoundation.org/news/update-on…

AI will help discover new science, such as cures for diseases, which is perhaps the most important way to increase quality of life long-term. AI will also present new threats to society that we have to address. No company can sufficiently mitigate these on their own; we will need a society-wide response to things like novel bio threats, a massive and fast change to the economy, extremely capable models causing complex emergent effects across society, and more. These are the areas the OpenAI Foundation will initially focus on, and in my opinion are some of the most important ones for us to get right. The Foundation will spend at least $1 billion over the next year. @woj_zaremba, co-founder of OpenAI, will transition to Head of AI Resilience. I believe that shifting how the world thinks about safety to include a Resilience-style approach is critical, and I am extremely grateful to Wojciech for taking on this role. Wojciech has been my cofounder for the last decade; anyone who knows him will understand what I mean when I say he is one of a kind. He has a lot of ideas about how we build a new kind of AI safety. @JacobTref is joining as Head of Life Sciences and Curing Diseases. @annaadeola, our VP of Global Impact, will transition to Head of AI for Civil Society and Philanthropy. @robert_kaiden is joining as Chief Financial Officer. @jeffarnold is joining as Director of Operations.

@Paula_JKnight Sorry. When I get like this all I can do is take straight GABA powder. If it is our nervous system’s brake mechanism, it seems fair to just bomb some in there. 800-to whatever. And sleep.

My night. I'm dealing with some difficult stuff at the moment, and I think I'm stuck in sympathetic overdrive. Ideas please? I know: Ice back of neck 4-6 breathing (not working) L-theanine (didn't work) Ears - will try parasympathetic exercises Feel dreadful #pwME

@ThePOTSPostman You probably know that low ATP can lead to hypoperfusion, but attaching screenshots

People with POTS can experience what’s called cerebral hypoperfusion. Reduced blood flow to the brain. Your brain isn’t being supplied the way it normally is, so everything slows down. Thinking takes more effort. Words don’t come as easily. Memory slips. Processing feels delayed. It’s not a lack of intelligence. It’s your brain trying to function without enough blood flow.

@Farbtastisch @____giggles____ Thanks so much!

@LoganSTL1 @____giggles____

Arzt-Patienten-Verhältnis bei #mecfs #longcovid immer Bombe, weil: Patient: "Für mich ist ganz klar, dass ich Luftnot habe, weil ich laut Labor zu wenig AdenosinTriPhosphat habe, womit meine Erythrozyten Sauerstoff transportieren können." Arzt: "Verspannung im Zwerchfell"

@surf4children Are you aware of the high percentage of people with ME that have Sticky Blood Syndrome? Antiphospholipid syndrome. Have wondered what the tie-in to clotting in LC might be. After what he’s been through, I hate to think of stopping any meds

@frausteinbock Oh yes, this. Reading music was the topper. I broke a total sweat, ran down my face.

Yesterday: Joyfully played the piano for 15 min after not being able to play for several years due to #MECFS Today: Cruel symptoms as if I experienced a head trauma - concussion like, whole body pain, weakness, inner vibrations. That is #PEM Post Excertional Malaise or #PENE Post-Excertional Neuroimmune Exhaustion. My brain doesn‘t cope with too much stimuli. No more piano….

@PaulGadsden82 @Gavtaraysin It doesn’t, does it. Sometimes I think they have no way to realize something this horrific

@Gavtaraysin Yeah I just don't bother. It never seems to register.

So I'm in a WhatsApp group chat with old friends, some I haven't seen in 13 years. Just got invited to a day out and I honestly don't think most of them known I've been mostly bedbound for 7 years.

@Farbtastisch @____giggles____ This looks valuable, do you happen to know how I could translate to English

@einfachkaffee Over the years it fluctuates with my addressing low energy/ATP. Low ATP causes malfunction of the pumps

@einfachkaffee Ah. Looked it up. Blocks voltage gated potassium channels, all more calcium influx, ultimately more muscle strength/contraction, strength So it’s not balance, it’s a muscle thing I’ve been looking into my muscles becoming stiff, looks like a sodium/potassium pump thing

It is extremely irritating that my baseline goes from Bell 30 to Bell 60-70 multiple times per day, proportional to the amount of amifampridine in my system (given everything else is „in balance“. Extremely irritating.

@liamsLCjourney First I’d eat some carbs when the fatigue hits, something to counteract low blood sugar (in case that’s it. Ribose causes insulin release>>blood sugar drop) Then I’d try more. Hard to say not knowing your dose.

@LoganSTL1 Hmm. Possibly. But I've also felt the same way with several other mitochondrial accelerators. Would you recommend lowering the dosage in that situation, or increasing?

Recently, I've gradually come to the realization that I need to admit a hard truth: I have "Myalgic encephalomyelitis (exacerbated by COVID)", not "Long COVID". In 2016, I developed a strange series of symptoms, now all-too-familiar to me: sleep maintenance insomnia, waking up feeling "hungover", unrefreshing sleep, heavy fatigue. There was no known trigger. I worked with a primary care doctor and we ran some basic tests, but never figured it out, and it gradually faded away in two months. In 2022, I lifted heavy weights to failure after a COVID infection and developed severe PEM. I went to the doctor and he told me they had been seeing this often in young people who had recently had COVID. (I never associated what happened in 2016 with my current symptoms until recently). I immediately assigned the label "Long COVID", and for years, I have been describing my symptoms as such, hanging out in Long COVID groups, observing the discourse and trying to apply it to my case. But I never felt that I fit in. Most people with Long COVID have a long, complicated journey with dozens of different symptoms, and take dozens more supplements and interventions to treat each one. But eventually, they do seem to chip away at their dysfunctions and get better. I've only ever had two symptoms: fatigue and PEM. And nothing really worked to treat them. Then I started hanging out in ME spaces. I kept meeting more people like me: they may have had many bodily systems affected, but they were fatigue- and PEM-dominant, and they first started to notice after COVID. And like me, they were having a much harder time recovering, even though others had even more complicated symptoms than them! There are many in my position. Depending on which figures you look at, 25-50% of those with Long COVID have ME as their primary subtype. I think it's hard for someone to admit they have ME for a few reasons, among them that the recovery rates are much lower and it's harder to explain to others. Of course, The Categories Were Made For Man, Not Man For The Categories: these are just labels. Our conditions have far more to do with each other than they don't. It's important to stick together, to educate each other, and to support each other. So I'm going to remain in both communities, trying to contribute and spread knowledge wherever I can. But as far as my medical journey, I will be primarily treating ME going forward, rather than Long COVID.

@myrowantree @broadwaybabyto Me too. Not even just random.

@broadwaybabyto I’ve also started rejecting random testing unless I think it’s going to be absolutely life changing. Some of the testing left me worse off and I’ve had enough.

I’ve been housebound (and mostly bedbound) for years. When I have to go to the hospital I plan for a pretty significant hit to my baseline. I build in recovery days. This week I had an appointment hit me harder than ever. It’s humbling. It’s terrifying. It’s depressing.

@liamsLCjourney You may have had a low blood sugar thing with ribose, it feels like fatigue. But once the dosage and side effect management are worked out it is life restoring

@LoganSTL1 Darn! We have similar symptoms but must have some different underlying pathologies - D-Ribose made me fatigued and L-theanine made me bleary.