The past few days have sucked. PEM crash will deepen. I feel a bit broken right now. #LongCOVID #MECFS #ChronicIllness #Sad #Grief #Anger
Fred Rossi
@darthfoo.bsky.social
I write about shrinking reserves from #LongCOVID and #MECFS with brutal honesty and zero fluff. Also: Star Wars, comics, cats, and Penguins goals. 🚨 #LetsGoPens #PwME https://darthfoo.substack.com
This is an amazing piece. It made me think back to something I wrote late last year. www.bloomberg.com/news/article... #MECFS #LongCOVID #ChronicIllness #Fatigue #Disabled #Disability
Chronic Fatigue Was Neglected for Decades. Then Came Covid
ME/CFS patients battled for recognition as researchers struggled for funding. The pandemic finally gave science the scale to start finding answers.
bloomberg.com
“It used to be energy. Now it is the memory of energy.” I used to walk six miles to manage grief. Chronic illness took that away. Then I lost Genie. My new essay is about grief, music, and losing the ways we once coped. darthfoo.substack.com/p/the-memory... #MECFS #LongCOVID #Grief
The Economics of Survival | Fred Rossi | Substack
Living with Long COVID and ME/CFS means every decision runs through a cost-benefit analysis you never asked for. This publication applies that framework to chronic illness, disability, politics, and c...
darthfoo.substack.com
I'm missing Genie a lot today. It's #fall, my favorite season, and I can't get out in #nature or #hike the way I used to. I've been going through old #photos. They make me smile and cry at the same time. substack.com/@darthfoo/no... #LongCOVID #MECFS #Disabled #Sad
Fred Rossi (@darthfoo)
I'm missing Genie a lot today. It's fall, my favorite season, and I can't get out in nature or hike the way I used to. I've been going through old photos. They make me smile and cry at the same time.
substack.com
I started writing the lyrics for this song on July 24, 2026. It was just 48 hours after we had to say goodbye to Genie. The pain was still raw. I felt lost. I didn’t really know what I wanted to say. I just knew I needed to write something. #LongCOVID #MECFS #Grief #ChronicIllness #Cats
Yesterday I went to a friend’s memorial. Today I’m paying for it physically, cognitively and emotionally. I’m in #PEM now. Repeated crashes can mean longer recovery and a lower baseline. Sometimes you spend energy you don’t have because something matters. Yesterday mattered. #MECFS #LongCOVID
It’s nearly 5 a.m. I haven’t slept. The pain won’t let me. I’m trying to write, but the pain makes it hard to even think. Words that should come easily just don’t. This is life with Long COVID and ME/CFS. Even lying still in the dark can cost more than you have. #LongCOVID #MECFS #ChronicIllness
Today has been hard. The pain is relentless, and my muscles feel like they simply don’t have anything left to give. Standing hurts. Moving hurts. Existing in my body hurts. Long COVID and ME/CFS can reduce an entire day to simply enduring it. #LongCOVID #MECFS #PwME
The cognitive fatigue dam has broken. Terrible PEM today. The grief over Genie has hit too. I miss my baby girl very much. This is the last photo I took of her. This is life with #LongCOVID and #MECFS. #PEM #Grief #Cats substack.com/home/post/p-...
“Four weeks ago I made four very large withdrawals in four days. The account did not have the funds. The body is still presenting the bill.” #LongCovid #MECFS #PwME #ChronicIllness #Grief substack.com/home/post/p-...
Four Weeks
There is a version of the last four weeks that is hard to explain to a healthy person.
substack.com
Visible said I woke up a few points better. Then three to four hours on the phone with our health coverage. Flat on my back, AirPods in, eyes closed. There goes the day’s energy budget. More calls tomorrow, and I need to shower. 🤦♂️ This is life with #LongCOVID and #MECFS.
“I am borrowing a horizon, because mine has been four walls and a ceiling for a long time, and a person needs somewhere to look.” #LongCOVID #MECFS #Disabled #Gaming #Reading #Tools #AI darthfoo.substack.com/p/twelve-per...
Twelve Percent
A year with Breath of the Wild, and what it actually costs to play a video game
darthfoo.substack.com
I’ve been re-reading what I wrote back in October, the essay where I laid out how this works. Full-time to demotion to part-time to eventual departure when even part-time becomes unsustainable. #LongCOVID #MECFS #PwME #ChronicIllness #Disability #Grief #Work darthfoo.substack.com/p/when-showi...
When Showing Up Is Not Enough
Why Employers Must Learn the Economics of Chronic Illness
darthfoo.substack.com
We had to say goodbye to Genie today. We helped end her suffering at 4:03pm. I’ll be away for a while. We loved you every day, Genie; your suffering ended today, sweet girl; ours begins. Hug your fur babies tight.
@mattreevesla.bsky.social That camera test today was exactly the kind of crumb that keeps us going. February 2028 feels a lot more bearable with little glimpses like that. Please keep them coming, they mean the world to us. 🙏🙏🙏 #TheBatman #TheBatman2
Long day at Hopkins yesterday. 2 hours each way, and #Tesla FSD carried the drive so we didn't have to burn energy I don't have. Today I'm paying for it anyway. That's the math of chronic illness: even the wins cost something. #LongCovid #MECFS #ChronicIllness #FSD
OpenAI launches GPT-Live, a new generation of voice models built on a full-duplex architecture, meaning they can listen and speak at the same time (OpenAI) Main Link | Techmeme Permalink
Will I ever be able to do anything of substance again? That question sits on my chest like a weight. Not rhetorical. Just the math of a life measured in what I don’t have. I don’t know. I’m still here asking. #LongCOVID #MECFS #ChronicIllness #Spoonie #PwME
Woke up feeling ok. Sorted & took out the recycling, brought in the trash can, sorted the mail. Four small tasks. That's the whole list. With #LongCOVID & #MECFS, "feeling ok" kills tomorrow's energy today. This is what invisible illness actually costs. #PostExertionalMalaise #ChronicIllness #PwME
I’ve counted what #LongCOVID & #MECFS has taken. This counts the other column. The hour with my wife. A reader who gets the joke. A memory I can hold in an empty house. Not a recovery story. Just the light, counted at the same scale as the loss. #PwME darthfoo.substack.com/p/the-small-...
The Small Things, Counted
I have written a lot about what this disease subtracts.
darthfoo.substack.com
I’ve counted what #LongCOVID & #MECFS has taken. This counts the other column. The hour with my wife. A reader who gets the joke. A memory I can hold in an empty house. Not a recovery story. Just the light, counted at the same scale as the loss. #PwME darthfoo.substack.com/p/the-small-...
The Small Things, Counted
I have written a lot about what this disease subtracts.
darthfoo.substack.com
The piece and the dialogue around it have taken a lot out of me. I’ve genuinely appreciated every thoughtful response. I may be slow to reply for a bit while I rest. Thank you all. #MECFS #LongCovid #PEM #PwME darthfoo.substack.com/p/the-patien...
The Patient Who Isn’t Supposed to Exist
I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward.
darthfoo.substack.com
The piece and the dialogue around it have taken a lot out of me. I’ve genuinely appreciated every thoughtful response. I may be slow to reply for a bit while I rest. Thank you all. #MECFS #LongCovid #PEM #PwME darthfoo.substack.com/p/the-patien...
The Patient Who Isn’t Supposed to Exist
I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward.
darthfoo.substack.com
For years I was told the way out of this illness was effort. Push through. Build up. Don’t give in. Here’s where that led: “The danger now is not trying too little. It is having tried too hard, for too long, on the theory that effort was the cure.” darthfoo.substack.com/p/the-patien...
The Patient Who Isn’t Supposed to Exist
I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward.
darthfoo.substack.com
This explains A LOT. Levinovitz's new book is called 'Demons by another name: Biology, belief & stories make us sick.' It is clear that brain retaining fits the argument that he is making: that what was deemed as demons are still making us sick & the mind can miracle cure 1/8
They call us obstacles to progress. I’m enrolled in the research. My response to WIRED’s “The Painful Truth About Long Covid.” darthfoo.substack.com/p/the-patien... #LongCOVID #MECFS #Wired #PEM #CBT #GET
The Patient Who Isn’t Supposed to Exist
I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward.
darthfoo.substack.com