The sequel to We Want Them Infected is done! COVID killed 1.2 million Americans while vaccines saved millions. Yet, disinformation superspreaders were empowered, where they are taking a wrecking ball to science & medicine. How did that happen?🧵 sciencebasedmedicine.org/everyone-els...

You can declare yourself against “universal public masking”, but that means I can declare you a dick. Long COVID absolutely wrecked my shit because people just couldn’t see themselves considering the health of others. Knowing you’re comfortable with that tells me everything I need to know.

Slept last night but anxiety is still going wild. Doc appt with PCP this morning. Trying hydroxyzine later today. Nervous about introducing another new med, but I don’t like the way diazepam makes me feel. I’m giving Maraviroc another couple days but if this doesn’t get better I’m done with it.

Maraviroc is not going well. My anxiety is horrible. I couldn’t get my body to stop shaking the last 24 hours. Had an urgent doc appt this morning and got some diazepam. I don’t think it helped much and I don’t like how I feel on it. Doc appt with my primary tomorrow to review.

Maraviroc day 5- I’m in tired but wired overdrive. Day 3 of no sleep. Upping antihistamines today to see if that helps. OCD, ruminating thoughts and brain on fire feeling are on overdrive. I’m really, so tired of all this.

I’m so tired of hearing “the pandemic was bad for my mental health & that’s why I refuse to acknowledge it’s still tearing apart hundreds of millions of lives & I definitely will never mask again & anyone who talks about it in the present tense is weird & wrong & bad & also perimenopause is rough!”

I do not think, in my life, I have met a disease that is as cruel, long term, as ME/CFS. I wrote a card to a researcher thanking them for their work and in it put, “I am too sick to live but too well to die”.

Rough night with little sleep. I wish all meds I try didn’t affect my sleep so much. 😴

USA: Mask rules are returning to Bay Area health care settings from Nov 1 as COVID, flu, and RSV cases rise. Counties including Contra Costa, Santa Clara, Sonoma, Napa, San Mateo, and Santa Cruz will require masks for workers, and in some cases patients and visitors, through spring.

When “Rest” does not feel like an accurate term (in regard to #ME/CFS) To me, rest has a positive connotation. My idea of resting when I was healthy was taking a long hot shower, taking a bubble bath, having a spa day, lounging on the beach, reading a book, or binge watching a tv series in bed.

Maraviroc has made me very, very fatigued. Making breakfast completely wiped me. My whole body feels like lead and my brain fog 😶‍🌫️ is at 💯. Words are tough to come by today.

MedPage Today: 'Medicaid Work Requirements Will Devastate People With Invisible Disabilities' — ME/CFS and long COVID patients must qualify as "medically frail" by Laurie Jones www.medpagetoday.com/opinion/seco...

Yes. Social media is how I've made friends with other chronically ill people.

Pope Leo is spitting. www.npr.org/2025/10/09/n...

The smell of fall in the morning. 🍁🍂☀️🌅 💛💛💛💛 I love this time of year.

“Over a 3-year follow-up, individuals with C19 infection had significantly higher risks of developing HPV-related cancers compared to those without: 67% increase cervical cancer 131% vaginal cancer 98% vulvar cancer 92% anal cancer 78% in oropharyngeal cancer.” Still think it’s ’just a cold’?

One of the most beautiful things about this app is how it reminds me that illness doesn’t care who we are. CEOs, singers, trainers, dreamers and all in the same fight, all reaching for understanding. Thank you for believing in science, and in each other.

Day 2. GI symptoms are up as well as base of skull/neck and eye pain.

The science is catching up to what most with Long Covid and those who treat us already know. Therapists and doctors have compared my symptoms to MS all along. Hope looks like solving the mysteries behind Long Covid 🌈

Stressed out bees become pessimistic, have lower expectations that good things will happen. Same bees, same. 🧪🪲🧠 royalsocietypublishing.org/doi/10.1098/...

THIS!! Since I got sick my period is DARK and the clots are huge. I took a picture to my gynecologist of a clot that was the size of my full palm (not including the tendrils, just the base) and she shrugged. 🤷‍♀️ I often call my husband into the shower and say, “OMG LOOK HOW BIG THIS ONE IS.”

Not great sleep. First night of Maraviroc very similar to valtrex side effects. Lots of wake ups and vivid dreams.

Headache and joint pain have entered the chat.

In the Anything But Covid (ABC) news today, I am seeing a slow uptick in adults mentioning tonsil removal bc they are chronically sick. My best friend just had it done. her words, “I know I probably have Long Covid but just wanna try this first.” Liz Plank also revealed an upcoming removal.

UCSB physics department let‘s goooooooo!!!!!!!! news.ucsb.edu/2025/022111/...

When leaders say "there are more important things to focus on" than the current pandemic, they are saying that there are more important things to focus on than brain injury, organ damage, long term disability in kids, immune dysfunction etc - and that sounds totally absurd if you think about it

Maraviroc experiment started this morning. I took a 150 mg pill and cut it into 8 pieces so I’m started very low doing that once per day in the morning. Let’s see how it goes.

Disability is the only marginalized group you can join at any time. One accident. One illness. One shift in your body. Growing older. That’s not fear... it’s perspective. Inclusion isn’t “for them.” It’s for all of us. #NDEAM #DisabilityJustice #AccessForAll

Yesterday's Living with Long Covid exhibit launch got some media coverage. 👏🏼 Hopefully more to come! The event is on until March 22 if you missed it globalnews.ca/video/114650...

I hope this actually comes to fruition. Many institutions have been working on this for a looongggg time. When I was doing an internship at City of Hope during undergrad this is exactly what we were working on. That was almost 20 years ago.

SF Bay Area folks - how do we get something like this at one of the bay museums? Where do we start? We need this here.

When I tell people the most truly self serving thing you can do is want a just and equitable society. Audre Lorde said it best, “I am not free while any woman is unfree, even when her shackles are very different from my own.” For this and everything.

Covid is 100% doing something to our eyes. I had intermittent blurry vision (that got better with nose PRP), was just in the ER for what they thought was optic neuritis but now they think was uveitis. My eyes are healing from that event but when I push too much now my eyes HURT.

This was a near perfect dance. Bravo to Mark Ballas on the choreography. youtu.be/QvRcDaOlnOw

One of the worst parts about needing to lie down all the time is after you‘ve eaten you‘re especially tired and need to lie down but your digestive tract was designed to be upright after eating.🥣 🚶‍♀️

The Ig Nobel is incredible , one year an Indian guy won it for calculating the average surface area of an elephant and during his acceptance they had an elephant hold up a sign with the surface area of the scientist on it, they do showbiz better than the Oscars

I haven't seen one single study that shows it's harmless to keep getting Covid again & again. But there are thousands of peer-reviewed studies that document long-term harms

FOUR HUNDRED MILLION!!!!

I know I do it a lot, but I want to shout out my sis. She can hear I’m having a bad day while she’s doing something fun and she doesn’t internalize it. She knows how to listen without absorbing and gives me space for the good and the bad. This is incredible emotional maturity and I am grateful.

Well worth a watch! In which Gary interviews Chloe #nzpol youtu.be/zl_LgDjpzxE?...

Pleasantly surprised this was published by the CDC last month. Not surprised bc good people still work there, but disability has been attacked under anti-DEI measures. www.cdc.gov/disability-i...

Simon Fraser University: “Long COVID exhibition co-produced with community opens at the Museum of Vancouver” “One in nine Canadians have experienced Long COVID…” www.sfu.ca/sfunews/stor...

This is wonderful. I hope they keep pursuing this. I watched my wonderful mother did of mestatic breast cancer and am so glad they are fighting hard to treat this.

I got my hair cut yesterday. She comes to the house. Told me ”You mask your pain so well.” I wish she could be here today as I come out of the hyper adrenic state and into excruciating body pain, twitching muscles and foggiest of brains. Long covid sucks.

Bless this Dad. As I was watching this I began to wonder if the son has long covid or something like it? I spotted compression socks, neck brace and what looked like a sodium cromolyn packet being opened into a drink. I felt so deeply for both the dad and son. youtu.be/90RFQLTwXSw

I know we're all adults, but, on occasion, everyone needs scooping off the floor by their irl friends & family. Reins taken for a few days; told that you're loved despite everything; given cake? Basically, what you'd do with a sad child. Adults get weary, and the nuclear family is waning.

I am just so sad today. High pain days are hard on the soul and body.

Hi. Stop letting your kids get Covid, I absolutely beg you as a fully grown adult who can’t believe how little of a life I have after 3 years of LC. www.nytimes.com/2025/09/30/h...