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Fred Rossi

@darthfoo.bsky.social
525 followers 1.2K following 518 posts

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 darthfoo.substack.com

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Fred Rossi @darthfoo.bsky.social · 30/09/2026
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
substack.com
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.
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Fred Rossi @darthfoo.bsky.social · 21/09/2026
#LongCOVID #MECFS #Grief #ChronicIllness #Cats darthfoo.substack.com/p/the-girl-w...
darthfoo.substack.com
The Girl We Lost
Listen now (4 mins) | Three Notes
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Fred Rossi @darthfoo.bsky.social · 21/09/2026
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
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Fred Rossi @darthfoo.bsky.social · 20/09/2026
substack.com/@darthfoo/no...
substack.com
Fred Rossi (@darthfoo)
Yesterday I went to a friend’s memorial. I knew there would be a cost. I went anyway. Today, I’m paying it. And now, the post-exertional malaise (PEM) hits. The exertion from yesterday can worsen sy...
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Fred Rossi @darthfoo.bsky.social · 20/09/2026
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
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Fred Rossi @darthfoo.bsky.social · 18/09/2026
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
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Fred Rossi @darthfoo.bsky.social · 15/09/2026
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
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Fred Rossi @darthfoo.bsky.social · 24/08/2026
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-...
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Fred Rossi @darthfoo.bsky.social · 23/08/2026
“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-...
substack.com
Four Weeks
There is a version of the last four weeks that is hard to explain to a healthy person.
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Fred Rossi @darthfoo.bsky.social · 19/08/2026
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.
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Fred Rossi @darthfoo.bsky.social · 11/08/2026
“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...
darthfoo.substack.com
Twelve Percent
A year with Breath of the Wild, and what it actually costs to play a video game
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Fred Rossi @darthfoo.bsky.social · 04/08/2026
Most of it by voice now, which is working better in the iOS 27 beta if anyone else is dictating their way through a bad stretch. I’ll finish it. Grieving Genie takes more cognitive & emotional bandwidth than I have to spare right now, so it’s one day at a time. Thanks for hanging in there with me.
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Fred Rossi @darthfoo.bsky.social · 04/08/2026
Not the argument for accommodation, which I already made and which employers remain free to ignore. The accounting of what it costs when they do. It is coming, but slowly. I’m in a crash, and July has been a hard month, so the writing is happening a sentence at a time.
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Fred Rossi @darthfoo.bsky.social · 04/08/2026
The trajectory I described from inside it went where I said it would go, on roughly the schedule I said it would take, because nobody involved had any reason to stop it. The next essay is the part I could not write in October.
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Fred Rossi @darthfoo.bsky.social · 04/08/2026
I wrote it as a warning. I thought describing the pattern clearly enough might slow it down. It did not slow down. There is nothing satisfying about being right when the thing you predicted was your own removal.
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Fred Rossi @darthfoo.bsky.social · 04/08/2026
I called it a slow-motion exit strategy. Then I ended it by saying I was still there, compression socks on, still working my two days, still hoping understanding would arrive before the next ultimatum did.
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Fred Rossi @darthfoo.bsky.social · 04/08/2026
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...
darthfoo.substack.com
When Showing Up Is Not Enough
Why Employers Must Learn the Economics of Chronic Illness
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Fred Rossi @darthfoo.bsky.social · 03/08/2026
😔
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Fred Rossi @darthfoo.bsky.social · 29/07/2026
July 2026 can go fuck itself.
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Fred Rossi @darthfoo.bsky.social · 23/07/2026
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.
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Fred Rossi @darthfoo.bsky.social · 16/07/2026
@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
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Fred Rossi @darthfoo.bsky.social · 10/07/2026
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
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Reposted by Fred Rossi
Techmeme @techmeme.com · 08/07/2026
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
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Fred Rossi @darthfoo.bsky.social · 02/07/2026
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
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Fred Rossi @darthfoo.bsky.social · 01/07/2026
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
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Reposted by Fred Rossi
Fred Rossi @darthfoo.bsky.social · 20/06/2026
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-...
darthfoo.substack.com
The Small Things, Counted
I have written a lot about what this disease subtracts.
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Fred Rossi @darthfoo.bsky.social · 21/06/2026
Happy Father’s Day to all the Dad’s out there.
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Fred Rossi @darthfoo.bsky.social · 20/06/2026
😔
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Fred Rossi @darthfoo.bsky.social · 20/06/2026
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-...
darthfoo.substack.com
The Small Things, Counted
I have written a lot about what this disease subtracts.
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Reposted by Fred Rossi
Fred Rossi @darthfoo.bsky.social · 08/06/2026
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...
darthfoo.substack.com
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.
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Fred Rossi @darthfoo.bsky.social · 11/06/2026
When PEM is bad, word-finding goes and reading and writing get very hard. I used to read two books a month. Now I re-read the same lines over and over just to take them in. Audiobooks land a little better. This is the loss the “everyone recovers” crowd doesn’t see.
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Fred Rossi @darthfoo.bsky.social · 08/06/2026
When PEM is bad, I have significantly more cognitive issues.
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Fred Rossi @darthfoo.bsky.social · 08/06/2026
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...
darthfoo.substack.com
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.
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Fred Rossi @darthfoo.bsky.social · 08/06/2026
Cognitive impairment is one of the most documented features of ME/CFS and Long COVID, slowed processing, word-finding trouble, working-memory loss, all worse after exertion. That others recovered doesn’t undo what’s happening in my brain. I write in fragments now. That’s the loss.
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Fred Rossi @darthfoo.bsky.social · 07/06/2026
My response to WIRED’s piece on Long COVID, from someone who taught CBT techniques before the disease made him a patient. #LongCovid #MECFS #PwME #PostExertionalMalaise #PEM #ChronicIllness #DisabilityRights #pwLC
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Fred Rossi @darthfoo.bsky.social · 07/06/2026
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...
darthfoo.substack.com
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.
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Reposted by Fred Rossi
Long Covid Advocacy @longcovidadvoc.com · 06/06/2026
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
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Fred Rossi @darthfoo.bsky.social · 05/06/2026
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
darthfoo.substack.com
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.
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Fred Rossi @darthfoo.bsky.social · 01/06/2026
Nearly 4AM. The muscle, joint and nerve pain is making sleep impossible. This is life with #LongCOVID and #MECFS. #PwME
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Fred Rossi @darthfoo.bsky.social · 01/06/2026
This was my reality before FSD. From my new essay, The Tools That Fit. “There were shifts where I slept in the car afterward. Not because I wanted to. Because I had to.” #LongCOVID #MECFS #PwME #ChronicIllness #Tesla darthfoo.substack.com/p/the-tools-...
darthfoo.substack.com
The Tools That Fit
Technology Didn’t Cure Me. It Just Improved the Math.
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Reposted by Fred Rossi
Belasco @belasco.bsky.social · 30/05/2026
Incremental gains are core to being a #pwME &/or a #pwLC Every tiny bit of energy, friction, sludge I shave off can decide if I have the energy to enjoy my tiny life or am just surviving. For me it’s things like coffee left for me in a travel mug, HUE lights, the Visible app, & an ecobee thermostat.
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Fred Rossi @darthfoo.bsky.social · 30/05/2026
Saw #TheMandalorian and #Grogu today. A lot of fun, & a real celebration of every era of #StarWars. Original Trilogy, Prequels, Clone Wars, Sequels, & of course Mando and Grogu fans all get something. Wanted it to push the story forward more, but it’s a wonderful entry point.
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Fred Rossi @darthfoo.bsky.social · 30/05/2026
Not a cure. Just better calibrated survival. I wrote about why the tools that fit are worth naming: darthfoo.substack.com/p/the-tools-... #LongCOVID #MECFS #PwME #Technology #Tesla #TeslaFSD #ChronicIllness #Disabilities #InvisibleIllness
darthfoo.substack.com
The Tools That Fit
Technology Didn’t Cure Me. It Just Improved the Math.
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Fred Rossi @darthfoo.bsky.social · 30/05/2026
Tesla Full Self Driving (FSD) wasn't built for #LongCOVID or #MECFS. The Visible band was. For someone managing energy-limiting illness, both quietly changed the math of my daily life. darthfoo.substack.com/p/the-tools-... #PwME #Technology #TeslaFSD #ChronicIllness #Disabilities #InvisibleIllness
darthfoo.substack.com
The Tools That Fit
Technology Didn’t Cure Me. It Just Improved the Math.
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Fred Rossi @darthfoo.bsky.social · 30/05/2026
New essay is up. This one is about the #technology that changed the math. “Neither of these is a fix. But both of them fit.” #LongCOVID #MECFS #ChronicIllness #PwME darthfoo.substack.com/p/the-tools-...
darthfoo.substack.com
The Tools That Fit
Technology Didn’t Cure Me. It Just Improved the Math.
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Fred Rossi @darthfoo.bsky.social · 29/05/2026
Today is a hard one. Struggling more than usual. Still sending good thoughts to everyone out there. Be well. #LongCOVID #MECFS #PwME #ChronicIllness youtu.be/i1mosSw4Hh4?...
youtu.be
Glen Phillips "Grief and Praise" (Official Lyric Video)
YouTube video by Glen Phillips
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Fred Rossi @darthfoo.bsky.social · 28/05/2026
Heartbreaking news about #ClaudeLemieux. You never know what someone is carrying. Check on the people you love. If you’re struggling, call or text 988. www.tmz.com/2026/05/28/c... #Empathy #Kindness
tmz.com
Claude Lemieux Died By Suicide
Claude Lemieux, 4x Stanley Cup-winning NHL player, died by suicide, TMZ Sports has learned.
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Fred Rossi @darthfoo.bsky.social · 27/05/2026
#LongCOVID #MECFS #PwME #PEM #Pacing #StarWars #Grief substack.com/@darthfoo/no...
substack.com
Fred Rossi (@darthfoo)
Still Here It has been a while, and I want to fix that. I’ve been up in the night more than I’d like. Pain has a way of stealing sleep and then, paradoxically, giving you quiet hours where the only ...
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Fred Rossi @darthfoo.bsky.social · 24/05/2026
Invisible Weight, Lyrics: Fred Rossi “I wake with the sun but I don’t feel awake. Every step I take feels like a small mistake The world keeps moving, I just stand still In this quiet battle no one thinks is real.” #MECFS #LongCOVID #PwME #InvisibleIllness darthfoo.substack.com/p/invisible-...
darthfoo.substack.com
Invisible Weight
Yesterday was rough.
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Fred Rossi @darthfoo.bsky.social · 21/05/2026
The Mandalorian and Grogu opens this week. I won’t be there opening day. That breaks a streak going back to Return of the Jedi in 1983. Over forty years of first-day Star Wars. Small loss. Still real. Grogu will wait. #StarWars #PwME
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