These, to me, are going to be the types of research that will bring us closer to working treatments. Understanding mechanisms of entry and structure are cornerstone.

I heard Julia Louis Dreyfus compare surviving cancer to focusing on swimming to a ladder w/ a shark in the water. We are all of us constantly swimming toward the ladder, but the ladder never arrives. And we are never celebrated for the remarkable endurance it requires. But we are still here. #MECFS

Had a mid year review and it went great. Which feels incongruous with everything else. I have to hide my disabilities in a variety of ways and I am in excruciating pain on days where I exceed 2-3 hours of work. Honestly, I don’t know how much longer I can do it bc theres not much baseline left.

The Tule fog is back and I miss the sun.☀️ Also it’s 40 here and warmer in the mtns. These inversion layers are wild!

Does anyone else get like super sweaty with long covid/MECFS? My night sweats have gotten really bad. I always overheated, but sweating this much is new. I am trialing propranolol again so maybe it’s that?

Taiwan’s National Health Research Institutes showed that in mice, transient expression of the SARS-CoV-2 spike protein from the Delta variant triggered fatal blood clotting and inflammation. Similar biomarkers were found in long COVID patients. journals.asm.org/doi/10.1128/...

This left ear pain is something else. I’m 5 days in on the Flonase/nasalcrom combo and it’s kinda helping, but in the evenings my left ear hurrrrttttssss. Gonna give it another week bc I really don’t wanna have to deal with the PEM from an in person appt.

An overwintering Sandhill Crane stands with one leg tucked in to help keep warm on a chilly day.

Montreal researchers propose that Long COVID’s neurological symptoms may result from a combination of gut barrier damage, lingering virus, and chronic immune activation that together disrupt the blood-brain barrier and inflame the brain. www.frontiersin.org/journals/agi...

This is wonderful! @mychal3ts.bsky.social‘s insta post made me aware of these and I just wanted to say, “This is so cool!”. More whimsy, wonder, art and pleasure in the everyday! www.bart.gov/news/fun/sto...

OK question: 🙋‍♀️ So, we know that a book was amended bc of threat of a lawsuit. Is any non profit doing that but for the other side? Spending money on litigation to stop people/organizations that are telling lies/half truths about covid/MECFS?

I’ve had major trouble with my ears post covid. Three ear infections and now have a suspected ”imposter” ear infxn Im guessing MCAS is the culprit and treating with Flonase/nasalcrom, but having the urgent care doc go, “Your inner ear is so swollen it’s sticking out into the canal” is unsettling.

CW: bodily functions Covid affected my bladder and I now leak AND have difficulty urinating. I am not squeamish in talking about these things. I want to be clear in exactly all the ways covid is destroying my body.

I start many of my talks on health disparities with this quote, and with a photo of my grandfather, who never had access to stroke rehab. This work will always be personal. #MLK

As a majority home and bed bound girlie all of the folks posting pictures of birds, sunsets, beaches and mountains… THANK YOU!!!!

I think what progressives miss about mass disability from covid is it takes people out of the movement. I canvassed, phone banked, called reps, volunteered at the polls, wrote letters, advocated locally, mentored. Now, all I can do is… couch. From one stinking covid infxn.

I think if somebody writes/produces/publishes something about a marginalized group and goes, “Well EVERYBODY else liked it” except the group, then you need to realize… it’s a problem.

💯

Sunset tonight up at La Cumbre Peak above Santa Barbara. Never gets old for me! #Sunset #Photography #SantaBarbara

UK study: Trajectory, healthcare utilisation and recovery in 3590 individuals with long covid: a 4-year prospective cohort analysis bmjopen.bmj.com/content/16/1... "Recovery rates were low with significant healthcare utilisation, both within & outside the LC service” #LongCovid #PostCovid #PASC

It really is the #GreatestMedicalScandal of the 21st century.

University of Basel researchers studied 14 post-COVID patients and found possible signs of long-term vascular imbalance 18 months after infection, these patients showed lower apoptosis in key repair cells, suggesting altered endothelial recovery www.sciencedirect.com/science/arti...

I do not like that MCAS affects my brain. It’s one of the first places I feel it. Trouble word finding, decreased patience, anxiety, OCD. It has gotten worse the further out I’ve gotten from initial infection.

Spouse was watching 49ers game last night. A commentator was talking and I go, “He sounds like the brother from Family Guy”. My husband laughs and goes, “That’s Tom Brady.” He then proceeds to text his friends this who are all now mad at me bc they can’t unhear it. You’re welcome!

One of the hardest things about LC/ME (aside from the constant, agonizing multiple ways we have pain and discomfort) is the fact that we have to fight to be believed on all fronts. The constant gas lighting from public officials, doctors, nurses, friends, family - people we had relied for support -

LOL (laughing to keep from crying). So the cartoon villain who has terrorized sick people for decades threatened to sue if this book didn’t include more of “his side,” but instead of investigating a clear pattern of intimidation to maintain a chokehold on scientific progress, we get…more chokehold

When will be learn that getting sick in general is just… not good for us?

I miss going to the gym with a fire playlist blasting and getting super sweaty.

A communication point we need to work on is that the immune system is not a muscle that needs to be flexed. It is a finite resource. Many parents I’ve talked to view illness sharing as a twisted form of community care for children and coworkers. That by spreading it, they’re making them stronger.

About AIDS: “It may even help to get infected patients to deny to some extent the idea of their eventual disability and death.” There are no new ideas in when it comes to blaming sick people. #ME/CFS

Post Maraviroc I’ve really had a hard time getting MCAS under control. Doc appt Monday with allergist/immunologist to see if he can help with a new plan.

Urgent care visit today. Ear pain is not ear infection, but she said back part of my ear is inflamed on both sides and very inflamed on left side. My left side of my head and jaw hurt and this morning it was painful to blink. Hoping this Flonase kicks in soon and helps with pain.

ALL OF THESE. I experience all of these except decreased heart rate. I track 59 symptoms in Visible. I don’t have all of them daily and experience them at various intervals and severity. I was healthy before covid and had NONE of these symptoms.

As a California girl I usually appreciate weather bc it’s so rare here, but man I have been loving these sunny days bc that Tule fog came and sat here for like 3 months!

On days when I have cognitive work or am upright more than I should be I get this deep pain at the base of my skull all the way down my neck to my upper back. It ranges from annoying to excruciating. Does anyone know what this is or what causes it?

Funny how basic airborne infection controls (masking, HEPAs, window cracked 2cm) are framed as a "burden," while the burden of being repeatedly exposed to Covid is dismissed as anxiety & goes unacknowledged

ME is never knowing if today will be a good day or bad day. And if you feel better is real progress or just adrenaline? Making sure to tow the line to wherever the new energy barrier is today. Having a disease that takes all your energy, but requires such precision to manage is cruel.

I’m sick of all the emotional grenades lobbed at people w/ ME—the articles/studies/books/guides w/ harmful information or both sidesing. I’m sick of feeling pressured to read things not bc I expect to learn anything helpful, but so I’ll be able to defend myself when it’s inevitably used against me.

I wish it didn't take a global pandemic to teach me this, but if someone's comfort matters more than my health, we're not compatible

Griffith University: New research confirms people with ME/CFS have a consistent faulty cellular structure 'New research found a crucial cellular structure responsible for calcium transport, the TRPM3 ion channel, was faulty in immune cells from people with ME' news.griffith.edu.au/2026/01/13/n...

Researchers from the University of Adelaide reviewed over 30 years of data and found that POTS is a complex, often misdiagnosed disorder that affects mostly women and can take 5 to 7 years to diagnose. Symptoms often worsen after COVID-19. www.heartlungcirc.org/article/S144...

The idea of #criptime has really helped me with pacing. My body does its thing on its schedule and nobody else’s.

I’m not even religious but I want to go to this church 🥹 It’s so rare & so grounding for the nervous system when people actually acknowledge reality & aren’t hypocritical when they claim to care about equity or accessibility or children or non-violence

Chronic Illness 101: I’ll feel a little better and my brain is like “You weren’t really that sick.” Then I do something little and my brain and body are like, “YOU ARE SO WEAK AND SO SICK HERE IS ALL THE PAIN GET HORIZONTAL RIGHT NOW!”.

Another day, another ECG. Life with heart damage from covid. Having long covid feels like living in an alternate reality where I've been left behind. My friend @emendenhall.bsky.social makes the invisible visible in her powerful new book

MCAS is wild. I got stung by a couple bees (for the first time ever!) in early August. The spot where I was stung in my foot starts to itch when my MCAS flares! So weird. 🐝

All I want to do on clear crisp day cold winter days is drive down to Berkeley and have a nice warm meal with my spouse at my favorite Ethiopian spot. Instead, I’m stuck in bed. 🛌

Thanks so much to everyone who donated and shared! I need many more donations before my next neurosurgery trip in 7 weeks — at least 1 more trip after this, if all goes well I’ll reapply for financial aid and flight assistance but may not get it, so please help! Link ⬇️ 1/2

UCLA-led study finds SARS-CoV-2 fragments can persist and form pore-making peptides that target immune cells by shape. This may help explain long-lasting pDC and T cell loss seen in long COVID. www.pnas.org/doi/10.1073/...