adic

@algekalipso @kepe__ @jstock37 SSRIs actually help some people (serotonin is systemic hormone w vagal effects) BUT those who develop long covid are much more likely to experience hypersensitivity reactions and withdrawal from SSRIs and all other psych meds

@kepe__ @jstock37 Oh gosh. How did the ssris interact with the disease?

Have you ever experienced Long COVID (defined as lasting at least 2 months, with symptoms like extreme fatigue, brain fog, and breathlessness)? Do you personally know anyone who has?

@jstock37 @kepe__ @algekalipso The rates are like 3-5% of Long Covid, the neuroimmune disorder, and post covid worsening of existing issues, developing new subclinical or non covid tied issues like diabetes, autoimmunity (50% increased chance) is MUCH higher

@kepe__ @algekalipso I'm not saying long COVID doesn't exist at all, but rather that the studies themselves when corrected for bias indicate rates of perhaps between 1-4%, not the 30-40% that the flawed initial studies used to scare people.

@Romy_Holland @Aella_Girl Probably hypnosis susceptibilty

@Aella_Girl i’m so curious what the correlates are of being good at getting the illusion

I tried this with some friends and it mostly doesn't work. You can *kinda* feel the illusion if you really lean in, some of us were better at getting the illusion than others, but it is not very strong.

@jeff_weinstein @QualiaRI

@jeff_weinstein Qualia research institute is working on theories for consciousness thru qualitative inquiry. Their researchers have fresh, advanced takes on phenomenology, and no one else is doing it like them

a birthday tradition for me: please reply with your favorite charity and what it means to you—and i'll donate! 🥳

@surf4children I wish all LC docs were like you

@SaraAna66550269 MINOCA? It’s considered secondary to microvascular disease

My #longcovid friends. Please listen to your body. I’ve had LC since 2021. All scans/labs clear until now. Yesterday I had a heart attack. No preexisting conditions. Arteries pristine, but troponin high & heart ultrasound showed a “sluggish” heart. My gut tells me it’s from LC.

@makemevisible24 How does that work? Does the sun not harm you?

Ive been continuously cribbing abt not having ability to do screens while I still had the ability to go out unlike other people with mecfs. Now that I've lost the ability to go out & do most things physically, I realise how precious it is to have all those physical abilities.

@ThePOTSPostman Benfothiamien, magnesium, b2, coq10, creatine

Hey friends. I’m compiling a list. Please drop below the best supplements, vitamins, even medication. Anything that you are taking that has helped manage your chronic illness symptoms.

@happy_haha7 yup! Zinc is effective:) Masking is also effective if it’s a kn95+, and more reliable

Health tip (an RN shared this with me): when about to attend a big or a potentially super spreader event.. take Zycam just before a trip and as soon as you get home. This has worked for me for different trips/event cycles. It prevents/shortens the duration the flu/bug☺️take care!

@AntoineMECFS ❤️

Extreme crash. Can't move. Can barely eat. Whole body pain and burning and flu-like. All because of 0.05mg LDA on Monday and Thursday. I hate myself so much I knew it would not go well. #MECFS

@gymrat_bookworm what genome analysis software is that?

Was initially butthurt that I got sick too late in the game to be in Dr. Tal's study, but apparently the $20,000 I spent to collect data on myself was spent in the appropriate manner, haha

@CogniCarbon Bryan Johnson should be there

I built a tool that ranks health influencers by how well their claims match 150,000 research papers. Here's the leaderboard. Will post more results soon!

The absolute best post of the day, and probably of the month, was from the other place, but I'll tell you all about it here. This public atlas came online to relate disease to protein levels found in the blood from thousands of people across many diseases, searchable by sex. 1/

@gymrat_bookworm @ImmunoFever Right. I also have acquired connective tissue instability in wrists, ankles, jaw, ribs, and neck, and there’s probably a specific pattern that’s post infectious / inflammatory but Not HEDs, would be cool if we could figure it out

Interestingly -and most strikingly- is that the texture of skin now feels like a water baby or some sort of rubber chicken. Like it feels very velvet smooth but also losing its integrity. As I become more hypermobile I've become more sensitive to pain. I've always been able to put my palms on the floor without bending my knees. I have a compressed iliac vein, osteoarthritis in my knee caps, and my neck feels unstable but I haven't gotten upright imaging yet

In January, I looked my physical therapist in the eye after three sessions and admitted, "I dont know if I have a 'true' Ehlers Danlos, but something is going on." With no hesitation, she replied, "Your neurological and musculoskeletal issues are different from my other hEDS patients." (For the record, hypermobile Ehlers Danlos is the only one of the 13 subtypes of Ehlers Danlos WITHOUT a genetic test, meaning you meet criteria on physical exam to recieve the diagnosis.) A couple months later, I reconnected with a physician I had worked with in Pittsburgh a decade ago. "I have been closely following your case. I really don't think you have hEDS, either, but I don't know what's going on." I've been lucky that Lyme patients were able to spot two warning signs in my labs: 1.) Th1 immune suppression 2.) High MMP-9 levels (>500) are commonly associated with chronic Lyme or mold illness, contributing to symptoms like joint pain and cognitive issues. My was at 910 in March. I look forward to seeing more research on genetics, infections, connective tissue, and hypermobility!

@JackHadfield14 it's hard! i have like 3 types of severe PEM- migraine (its a type of pem!), flu-like, and metabolic crash

We’ve noticed this too. Many patients say they have PEM, but deeper questioning reveals different phenomena entirely. 10+ different presentations all saying worse after exertion, but with completely different internal meaning. A single question will just lump them together.

@lydialaurenson it really sucks that a subset of these people are dying. i wish we had therapies that actually worked for severe cases- atm, GLPs, or not, survival stats are grim

@lydialaurenson ive been seeing anecdotes that GLP-1s eliminate compulsive behavior in BED, OCD, probably a subset of anorexics are also responders in that way but the conditioning runs DEEP

when I mention this, people react by being like “yes obviously this is happening, it’s tragic” or “obviously this isn’t happening, and if it is, then it doesn’t matter compared to the societal benefits of glp-1s” I have the sense that female body anxiety is quieter now, not gone

@atranscendedman id love to donate but seems like the only good longitudinal centers are on east coast LIINC took one sample, did a really shsitty intake survey and then ghosted me entirely

This is why biospecimen collections matter. This study shows what samples can reveal, and what we miss without them. No 1 year samples. No 2 year samples. No long view. The more we collect, the faster we learn. Donate if you can. It matters.