People saying "but if we defined 'middle class' that way there would basically BE no middle class in America!!" Me:

You see "super coupon" saver shows featuring (always women) saving/getting $40k/year(!!) in groceries, but what's overlooked is that this is often FULL TIME JOB. One mom said she easily spent 40/hrs week coupon clipping and deal shopping. For real. Convenience fees work because you're exhausted

Exoskeletons! Bionic leg braces! The wrong trousers! Most of us do not want these things. The loss of being bipedal isn’t what grieves us. It’s the fact that abled people just cannot help themselves making exclusionary decisions that DON’T NEED TO BE. Everyone benefits from ramps.

Did you eat? Take your meds? Drink water? Remind someone you love them?

It's a laying down & chilling with a HR of 110bpm kind of day #MECFS #POTS #NEISvoid

#MECFS "My unplanned career pivot taught me that the most impactful organizations often emerge from solving problems others ignore. As I navigated the healthcare system, I discovered a patient population abandoned despite representing a larger market than multiple sclerosis and Parkinson's combined"

Statements like below in this pre-print lead straight back to graded exercise bc few providers understand their pts level of function or trust when pts say they can’t exert more than they are. Which leads providers to feel their pts are difficult or non-compliant, further eroding care.

Putrino’s own clinical guidance treats PESE and PEM as equivalent which is a huge problem and leads exactly here.

This is dangerously disrespectful of what we know about the PEM disease process as well as how motivated & socialized patients are to push ourselves. When we say this advice is dangerous, THAT’S KNOWLEDGE WE LEARNED IN THE MOST DEVASTATING WAY POSSIBLE. PLEASE DON’T DO THIS TO ANYONE ELSE 😩

We don’t need to be encouraged to rearrange how we spend our finite capacity in ways that steal from our function & make us sicker. We don’t need to be advised on how to rearrange deck chairs on the titanic. What we need is real research & real treatments, so we can have real capacity increases.

I'm just a girl, standing in front of the entire medical establishment, begging them to stop being a bucket of gaslighting fake PVC body-unsafe jelly dicks and actually listen to the patient in front of them and not the patient in their mind

Isabella Wranå won gold for curling, but should've for this video

Article has links to call your officials if you live in Indiana

I feel like I need to print this out and highlight and annotate it. It doesn’t HELP me by giving me treatment avenues but even given I’m not a scientist so much of this makes SENSE to me. Like, it intuitively feels like “yes! This is what’s going on my body!” I could absolutely be wrong ofc

Join us for a free webinar! The Sick Times editors @mileswgriffis.bsky.social and @betsyladyzhets.bsky.social — plus special guest speakers — will demystify the process of writing and pitching op-eds and essays on Long COVID. Register now: us06web.zoom.us/meeting/regi...

Anyone on my network familiar with social supports in Canada, specifically in Edmonton, where a disabled autistic guy might turn for help? He’s about to lose housing and internet access. He’s brilliant but physically hurt, and he’s about to be on the street in this winter.

other "alerts" that can affect how/if the liver sends energy to the brain include: - signals from the gut microbiome (inflammatory signals cause problems; "good bacteria" digesting fiber send "alerts" that help) - immune signals (chronic inflammation can cause problems)

however, there's a lot of other "alerts" that can also tell the liver it's time to actually use send the "battery backup" to the brain if these alerts go haywire or get "dysregulated," that can also mess with the liver-brain backup battery system

annoyed about the shitty "patient education" I received when I was initially diagnosed with Fatty Liver Disease so rather than seething, I'm going to share some of the info I've gotten from reading scientific articles #NEISvoid #MAFLD

Go submit your testimony to the House right now! And again (or if you miss today’s House deadline) to the Senate on Tuesday! You don’t need to live in Maryland—the idea is to show this is a global problem/global market. Here’s how to submit: docs.google.com/document/d/1...

This need has become quite acute quickly, and I'm rapidly deteriorating. I'm worried about losing the progress I've made over the past few months. I know there's a lot of need right now, but if I were to start a gofundme or something to hire some help, is that something people might contribute to?

me, librarian: I think information should be organized and structured logically so that searches are high in precision and recall tech industry, 2000: nope, keyword searching and opaque relevance rankings are what you’ll get … tech industry, 2026: now you’ll just get fake hallucinatory text

#MECFS and rest research survey* - includes a low energy version - allows self ID MECFS - includes medical providers *I have no affiliation or gain. Just sharing a random find www.restandmecfs.com

“Winter may be beautiful, but bed is much better.”

The Insta post has 7 slides that summarize the study but it doesn't link to the study itself so I grabbed a free study link: LED lighting (350-650nm) undermines human visual performance unless supplemented by wider spectra (400-1500nm+) like daylight - PMC share.google/OLosvASkU58v...

I KNEW IT. WE WERE RIGHT TO HATE LEDS

A great article about clinics closing by @brittashoot.com with @thesicktimes.org! Please give it a read.

Toronto may cancel new community centres, libraries if development funding dries up globalnews.ca/news/1163476... The city's chief financial officer reiterated that roughly $300 million had been deferred as revenue from development charges dries up, adding that some projects may be cancelled.

The structures people are now building are the structures we need as part of everyday life. Your ill and disabled friends have been trying to tell you this for years: there are many people sick with socially-maligned illnesses, that most other people simply disappear from their minds.

Watch it here: Finding Our Voices After COVID Julia Claire Taylor is an opera singer based in NYC who lost her ability to perform after a COVID infection in 2022. A clinical trial with @putrinolab.bsky.social allowed her to reach a milestone this October. www.youtube.com/watch?v=SJZM... #LongCOVID

They need to invent a rest that makes you feel rested.

🧵 "Why I Can’t Just Meet You for Dinner: The Reality of Post-Exertional Malaise" substack.com/home/post/p-... Thoughtful blog post which tries to explain postexertional malaise & how those who suffer from it need to be very careful with which activities they take on #LongCovid #PwME #MEcfs 1/

3 is my day job, but 4 is my aspiration 2 is biologically out of reach, and as for 1, I'm typically the author of repeated nap requests

I ask community to hold me in kindness, once again, as I heal, for practical things like shelter, phone, small bills since I can't work to do these things for myself right now. Every dime is appreciated. Grateful to all. 🧵 2/3 linktr.ee/khernandez #helpfolkslive2025

Just a few years ago, I escaped one of the most horrific chapter in my life. I still don't know how I survived, and with physical and emotional reminders that have changed me forever. 🧵 1/3 #Helpfolkslive2025 linktr.ee/khernandez

Sharing from Alice Wong's IG account. Alice's Celebration of Life will be on March 25, 2026.

Anyway Working in the Times of Chaos is mostly about clinging to your own humanity, accepting imperfect solutions while gently nudging for better when it comes to people, and reminding yourself that everyone is working a part time job of emotional self-regulation.

I don’t have anything funny or witty to offer as a balm for what we’re currently living through. But, what I do want you to know is that there is a human behind this account and humans behind this brand that are hurting with you. Sending hugs across the internet to everyone who needs one. 💜

magnesium gets depleted quickly in stressful situations! bsky.app/profile/skwi...

l've heard some people do great and some have weird side effects on glycinate (not mentioning this to abc so much as am letting reading new to Mg supplementation know!) Mg threonate is another good option for increasing magnesium in the brain if people feel weird on Mg glycinate

If you are feeling powerless and would like to help save a life today, I am personally asking for your time in emailing this hospital (template and address in article). Hospitals in the UK have been known to kill ME patients due to refusal to follow the science. Please help save Savannah's life.

Hey APub authors who have Amazon works on the rights list--this could give you a LOT more money out of the Anthropic settlement.

Im not sure why, either. However, there was a change in recommendations for potato storage www.theguardian.com/food/2023/ma...

ok new pinned thingie incoming with a cover this time upcoming book! preorders live! all the things! :) oh and there's a goodreads giveaway happening right now, omg I am bad at this www.goodreads.com/giveaway/sho...

The Shingles vaccine and reduction of dementia: a new natural experiment from Canada replicated 3 others and adds to this week's link to slowing of biological aging. erictopol.substack.com/p/spotlight-...

I was googling CYP substrates bc a recent addition (Chinese skullcap) is an inhibitor of a specific CYP enzyme, and I wanted to check for interactions with rx drugs that may be problematic if metabolized more slowly The good news is --

hey guys I'm starting to think Jon Stewart is not on our* side here ** * covid cautious folks and generally anti-fascist folks of all stripes ** a bit of sarcasm here, he's been an ass for a long time, but given this is who he platforms now maybe it's time to give up hope he'd ever cover ME/CFS

World’s richest 1% have already used fair share of emissions for 2026, says Oxfam www.theguardian.com/environment/...

Do others remember this headline? According to this new JAMA study, the US reaches this incalculable loss annually. I think most of the public doesn't realize it. #IDEpi #EpiSky