“Imagine plugging in a dead cell phone over night. When you awake, you expect it to be at 100%. But when you wake, it’s only at 9% and you have to try and function on that 9 percent. You’re never fully charged.” https://buff.ly/3rRDYWM #chronicillness #severeME #pwME #pwLC

It is a truth universally acknowledged that when two different pill bottles open and dump themselves all over the bag you are transporting them in, they must be the two near-identical pills

Can anyone recommend an #MECFS & #POTS knowledgeable doctor in the DC area?

It is both astonishing and appalling that so many millions of people prefer suffering the extreme, irreparable, life-threatening harm of Covid-19 to wearing a respirator mask. #COVID19 #respirator

TW: Beth Mazur’s death, and our “meaningless” lives as #MEcfs patients by @julierehmeyer.bsky.social

#DecodeME A brilliant interview with Chris Ponting by @davetuller1.bsky.social Chris gave new details, including: - They got feedback on a draft of the pre-print from independent researchers, to help them test their findings and improve the manuscript. 1/ youtu.be/CGUmcB_YIaA?...

Science magazine’s coverage of the DecodeME initial results : www.science.org/content/arti...

Today, August 8, is #SevereMEday. (Post 3 of 3) This drawing by Chelsea Buivids so perfectly captures our experience as MEeps. 1/ I remain one of the #MillionsMissing #SevereME #pwME (#MEep) #UnitedForME #MEcfs #MyalgicEncephalomyelitis #CanYouSeeMeNow #ChronicIllness #Spoonie #InvisibleIllness

Today, August 8, is #SevereMEday. (Post 2 of 3) I don’t normally participate (or like to admit I'm in the severe category), but for some reason I did this year: here is my entry for @meactnet.bsky.social Severe ME Artists Project 2025, a self-portrait I call “Night and Day”. 1/

Today, August 8, is #SevereMEday. (Post 1 of 3) The Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance was started in 2013 1/ I remain one of the #MillionsMissing #SevereME #pwME #UnitedForME #MyalgicE #MEcfs #MyalgicEncephalomyelitis #StrongerTogether #CanYouSeeMeNow

Would you like solutions or comfort? #raaar

Another episode of Unraveled: Understanding Complex Illness just posted. We have our usual rambling conversation this time about Mast Cell Activation Syndrome. Please take a look, subscribe, and comment. Also always want to hear suggestions for future episodes. www.youtube.com/@Unraveledpo...

"With 1 in 7 older adults providing care, many while juggling full-time jobs & their own #health issues, the study highlighted a need for #workplace flexibility, health interventions & better access to #caregiving #support.": buff.ly/gL04bMQ via smu .edu .sg #singapore

#OptimismIsAWeapon #StanleyRobinson

launches shortly... crowdfund.berkeley.edu/project/46120

This is a friend of mine. It’s inhumane.

A friend alerted me that @bluegeorgia.bsky.social posted this pic from my #HandsOff speech on the other place. Huge thanks to @wilhelminaj.bsky.social for allowing me to tell her story, to @exceedhergrasp1.bsky.social and #MEActionGA for aiding me, and to Atlanta for your roaring support.

Okay hear me out, instead of springing forward an hour, what if we did four years.

Here's a thread of #art in my Art Studio and ready to ship! I hope it's easier to see it here in one place. 🧚‍♀️ #CollageArtist #TaiwanArtist #Papercrafts #Handicrafts #MySeveralWorlds #CarrieKellenberger #artist #SmallBusinessOwner #handmade #Design #WhimsicalArt #Papercutting #HandmadeTaiwan

A 2019 Cochrane review controversially recommended exercise therapy for ME/CFS. While Cochrane acknowledged problems with the review and promised a complete update, they abruptly dropped the project in December 2024. Read more from @davetuller1.bsky.social at The Sick Times. bit.ly/3Q2LhUz

The administration took down the reproductive rights website that women need access to. So The Skimm bought a url and brought the content back. Pass this on! Go to reproductiverightsdotgov.com

The shutting down of medical research and communication, withdrawal from the WHO, and dismantling or restricting the DHS and Medicare/Medicaid are all eugenics efforts. It's important to contextualize that, and to take it very seriously. #disability #chronicillness

They’re counting on the public tolerating a 1 in 22 risk because many people don’t really know what ME/CFS looks like. It’s worth seeing for yourself what we’re all being asked to accept. Great doc about it called UNREST streams free on YouTube. Premiered at Sundance, was Oscar-shortlisted.

“The truth is, sometimes people are just going to be upset with you. They won’t #understand your #boundary & they’ll be unhappy that they’re not getting what u want. How they feel & how they manage those #feelings is out of yr lane": https://buff.ly/47lBlgE #boundaries #SelfCare

It’s hard to be chronically ill at the holidays. Let’s be honest - it’s hard year round. People are constantly treating us like burdens or they’re ignoring us altogether. We spend a ridiculous amount of spoons fending off unhelpful & unsolicited advice /2

First show of this year’s Nutcracker… Menacing voice: I am here to crack nuts and take names, and I already know all you fuckers.

Beth Mazur passed away one year ago. She battled #MECFS for 15 years and was a co-founder of the MEAction Network. She was gone too soon. I'm thinking of her today. That's all. #millionsmissing www.meaction.net/2023/12/22/s...

Like, PEM isn’t a feature of other conditions. It’s something we see in ME. That’s basically it. People may *screen positive for bits and pieces* of PEM in other conditions. People may have ME *and* another condition, but it’s very important we’re clear that PEM isn’t a part of other conditions.

🧵 Ten years ago today at 3:30pm, I turned in grades for the four college courses I was teaching, and that was that. The last day of my life working a regular job. The first day of my life as a full-time, disabled, chronically ill Sick Person.

Cochrane, by dropping their planned review of exercise for #MECFS, disrespects the energy and time of those involved in that review AND leaves the existing review supporting exercise for ME/CFS and #LongCovid. Our petition calls for its withdrawal, www.change.org/p/cochrane-w...

“Well what did people do in the days before modern medicine then???” They died. Died. DIED. EARLY. PAINFULLY. THEY GOT GOT BY SINGLE-CELLED ORGANISMS. (EMBARRASSING.) THEY DIED OVER SHIT LIKE STREP THROAT.

“Telehealth Will Die In 3 Weeks Without Congressional Action” www.forbes.com/sites/judyst...

Telehealth is important for elderly and disabled. Also for those with mental health issues who have difficulty getting into a traditional office setting.

In today's edition of billionaire math: The 100 richest Americans fortunes grew by $1.13T in 2024 = $8.9K/household. Avg. household spends $5.7K on groceries, $2.1K on gas/yr = $7.8K/household. Those 100 billionaires could've covered everyone's gas & groceries and still be up $156B on the year.

💠 #COVID moves around body & persists in organs - incl brain + heart - for years 💠 Lowers IQ 💠 Children can also get L-CVD Important article from @flinty01.bsky.social @westaustralian.bsky.social

A personal viewpoint on #MECFS. This is focused not on #pwME rather on why we - society - forsake them. Please read ⬇️ theconversation.com/ignored-blam...

The investigative journalists at Pro Publica have written a recent series of articles exposing United Health Care's outrageous and dishonest claims denial practices. Here are some links: www.google.com/search?q=pro...

📌 Excellent resource alert for #ME/CFS and severe #LongCOVID patients from Bateman Horne Center, supervised by Lucinda Bateman @advocate4me.bsky.social ! Download The ME/CFS Crash Survival Guide for free from the link below. It’s a 49-page manual. batemanhornecenter.org/education/me...

His company was well known for having developed algorithms that systemically killed hundreds of thousands of people with total impunity. You’re not witnessing “coarseness,” you are witnessing decades of grief and rage funneled into a few jokes on the internet made by people with no recourse.

Here’s another song from TikTok about the CEO’s assassination. This creator’s introductory comment is “And medical violence is always wrong, but only when it flows one way.” One million views, 182k likes so far. (Direct link: www.tiktok.com/t/ZTYfshson/) h/t @kimlacapria.bsky.social 7/

youtu.be/RiwX9Y0NbiQ All journalists (and everyone with a sense of decency and fairness) out there please take a few minutes to watch this. The next great scandal, ignored for decades, we need your help! #MyalgicEncephalomyelitis #Me #pwME

Good morning and Happy Thursday to everyone who is determined to turn up the volume and EXPOSE all of the brutal, deadly consequences of abortion bans in America. They're not "pro-life." They're pro controlling women's bodies.

Some of my recent chronic illness gifts on Etsy, shirts or mug [ www.etsy.com/shop/Chronic... ] or pins, stickers, etc on RB [ www.redbubble.com/people/Chron... ] #chronicillnessgifts #chronicillness #chronicallyill

Seriously, new people, add a profile pic and skeet something instead of just replying, it helps a lot to avoid being blocked.