Molly Freedenberg

It’s Millions Missing, ME Action’s day of ME/CFS advocacy, and fittingly, I’ve been too sick and tired to write about it until now. Life with ME/CFS is a life of limits. Millions Missing 2026: Frail and frustrated open.substack.com/pub/mollyfree/… #millionsmissing @MEActNet

@1goodtern Did their moms have Covid while pregnant? Have those kids had Covid? Because cognitive issues and constant infections are known consequences of both.

Look, it depresses the pants off me, but I need to say it: Too many parents here of 2-4 year old children have told me recently that their kids have developmental delays. It's far more than I've ever heard about before.

@TachieApp @SickPatato Definitely!

@mollyfree @SickPatato Hi! Are you interested in beta testing?

I'm a developer with #POTS building a next-gen iOS app for #chronicillness management. I am combining the best aspects of TachyMon HR monitoring + Bearable symptom tracking + Visible pacing, all in one. No outrageous, insane subscription fees. Demos coming soon

@ThatEricAlper The Wherehouse

Stores that are long gone that you miss from your childhood or teenage years. Which ones do you miss?

It's always worth reminding yourself that parliaments and government buildings and the WHO headquarters and billionaires all quietly got themselves clean air systems while publicly denying the need for clean air.

@DafoeWhitney Curious about the care/cleaning/maintenance requirements of the bed jet? How much of a pain in the ass is that? I had a Chili Pad and that was my main reason for abandoning it.

Blistering headache on a Friday night with my parents out of town.  Laying in bed with clean feet and socks with warm dry air from my Bed Jet flowing up my naked body under cozy blankets. Very slow jazz playing in my ears with iem's I made. This is chronic bliss. 😍😝🤪 Links ⬇️ 🔹Bed Jet - I highly recommend it! It ended night sweats for me and you can create microclimates in your room like keep your legs/body warm but head cold etc.  Expensive but sooo worth it if it’s not a huge monetary sacrifice for you.  Just be sure to raise the unit so it’s not blowing dusty floor air onto your face.   bedjet.com/products/bedje… 🔹Music - Søren Bebe Trio - Home - beautiful slow jazz that isn’t elevator music album.link/cw9swr3hzbndn 🔹iem’s - I’m using planar magnetic iems (in ear monitors - like wired airpods) played out of a vacuum tube amp and a nice DAC etc, I have taken apart the iems and completely redone the acoustics, so they sound nothing like they do stock, and I will hopefuly be selling them modified on my headphone website when my health picks back up (please?  Is anyone listening? 😣) My Headphone Website - rhythmdevilsaudio.com 🔹Covers - Bamboo covers - very nice (the most "gourmet" covers I've ever owned) but purchased just to be sure of no chemicals simplyorganicbamboo.com/products/duvet… 🔹ME/CFS - You can try to get this by kissing people with Covid and then doing a lot of exercise, also highly recommended!  😣😇😭😱

@agy_lena I’m so sorry you’re in this position. But give yourself grace.There’s no way you could’ve known.Most people w MECFS who get the v (or any vaccine) are fine. Some aren’t.You never know which you’ll be.This is so awful, but it’s no one’s fault-least of all yours.

Survival is insufficient: In defenese of social support, sound science, and disabled joy open.substack.com/pub/mollyfree/… @MEActNet #SOS #MillionsMissing

@MEActNet #MECFSAwarenessMonth

What IS ME/CFS anyway? A list of resources explaining this disease so you don't have to, in honor of #MECFSAwarenessMonth open.substack.com/pub/mollyfree/…

I've just seen some staggering data on how badly infections are affecting urgent care here *now*. It's hard to comprehend. It's hard to get your head round it. You need to see it to believe it. 👀

This is stunning and CONCERNING

My life is not a day at the beach (no, literally) On chronic illness, grief, and acceptance... inland open.substack.com/pub/mollyfree/…

What's your favorite ableist microaggression? I've compiled a list of resources explaining ableism, eugenics, and how to show up for the spoonie or crip in your life, so you don't have to have the complete meltdown my friend and I did. open.substack.com/pub/mollyfree/…

Join me Saturday, April 19, on Zoom for a discussion about disability and communal living! open.substack.com/pub/mollyfree/…

Media Diet: An all feelings, no answers kinda March open.substack.com/pub/mollyfree/…

Why is rest revolutionary?

My latest for the 'Stack, including great TV (new Dexter anyone?), great music (Boyz Noize Challengers mix anyone?), and an article that gave me hope for the next 4 years My Media Diet: Culture nummies for February open.substack.com/pub/mollyfree/…

One hundred thank yous open.substack.com/pub/mollyfree/…