Sue Poncin
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sueponcin.com
Sue Poncin
@sueponcin.com
2.2K followers 2.2K following 890 posts
After Jan 2021: #Disabled by Long COVID & #BookSky author #LongCOVID memoir
Before Jan 2021: overachiever, #MathSky Calculus teacher, Mom Uber driver
www.sueponcin.com
In The Space Between: https://a.co/d/0fkSZMd
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sueponcin.com
Sue Poncin @sueponcin.com · Mar 23
Five years later, we are not alone.
#LongCovid damage is nothing short of baffling.
@sanders.senate.gov
@duckworth.senate.gov
@kaine.senate.gov
Don’t forget about us.

Thank you @nbcchicago.com for helping #LongCovidAwareness by sharing our story.

nbcchicago.app.link/s4hgLRPnXRb
A screen shot from the video of my husband and I. I am trying to tap my fingers together with my left hand which I cannot do fluently and it also makes my speech falter if I try to talk while doing it.
sueponcin.com
When does Long Covid become Forever Covid?

Because I think I’m there.
February 12, 2026 at 8:23 PM
sueponcin.com
I saw this post on Facebook and the volume of negative and derogatory comments still continues to surprise me.

Beyond the risk of becoming disabled by one infection (hi, that’s me), why would you risk getting sick and miss what you’ve worked towards for four years?
luckytran.com Dr. Lucky Tran @luckytran.com · 6d
Encouraging to see some members of the US Olympic team wearing masks to protect their health ahead of competition.
U.S. Olympic men’s cross-country ski team member Ben Ogden, second from left, speaks at a news conference Thursday, Feb. 5 at the competition venue in Tesero, Italy. From left, Ogden’s teammates are Zak Ketterson, JC Schoonmaker and Zanden McMullen. (Nathaniel Herz for FasterSkier) Masked members of the U.S. women’s Olympic cross-country ski team pose for a photo Thursday, Feb. 5 after a news conference at their competition venue in Tesero, Italy. From left , Jessie Diggins, Hailey Swirbul, Sammy Smith, Julia Kern, Novie McCabe and Rosie Brennan. (Nathaniel Herz for FasterSkier)
February 7, 2026 at 6:07 PM
sueponcin.com
Anyone with a dynamic disability or chronic illness can identify with Aliyah Rahman’s unpredictable body. The nightmare of being taken into custody unjustly compounded by being told you should walk because “your legs work to drive”

Thank you for sharing your story!

youtube.com/watch?v=zrcW...
WATCH: Minneapolis resident and U.S. citizen Aliya Rahman describes being detained by ICE
YouTube video by PBS NewsHour
youtube.com
February 5, 2026 at 7:54 PM
Reposted by Sue Poncin
chromatowski.bsky.social
Long Covid friends—

A bill in the Maryland legislature would create an R&D fund for LC—a big deal when new federal funding is stalled.

The advocate behind the bill is asking for people anywhere to submit written testimony on Fri 2/6 on your experience w/LC, to say why this is needed!

More info:
Sign the Petition
Advocate for Maryland HB 0027 for Long COVID R&D
www.change.org
January 30, 2026 at 8:21 PM
Reposted by Sue Poncin
betsyladyzhets.bsky.social
Today @thesicktimes.org: RECOVER-TLC is launching the biggest Long COVID pediatric trial so far. @spichaksimon.bsky.social examines that trial, and two other pediatric trials in progress. thesicktimes.org/2026/02/03/l...
Long COVID affects millions of children. The largest pediatric trial so far launches this year. - The Sick Times
One NIH study will test low-dose naltrexone, while other upcoming trials will test larozitide and taurine.
thesicktimes.org
February 3, 2026 at 7:07 PM
sueponcin.com
Sharing images and videos of our Long Covid experiences help make our world a reality for others and spreads awareness.

Some of my favorites:
My daughter’s recognition night - she’s in a red cap and gown hugging me in my wheel chair. My daughter’s gymnastics meet - she’s in a black and blue Leo hugging me in sitting in my zero gravity chair propped up with a blanket under my arm and pillow behind my head Me reclined in the passenger seat with a clenched fist after a cheer competition. Me lying in the backseat of the car with my head propped on a blanket, scarf over my eyes, and hands clenched on our way home from a gymnastics meet
February 4, 2026 at 3:01 AM
sueponcin.com
A gorgeous essay putting into words how so many of us with Long Covid feel being embraced by the ME/CFS community that has been lifting each other up for years.

centerleftstack.substack.com/p/those-who-...
February 4, 2026 at 2:52 AM
sueponcin.com
Putting a human face to the unknown was one of the driving forces behind sharing my story. Long Covid is very real, it can happen to anyone and it can destroy your life.

a.co/d/3ffYy6E
February 2, 2026 at 1:52 AM
Reposted by Sue Poncin
sararobitaille.bsky.social
New children’s books about living with Long COVID are here!
Long COVID Transformed My Mommy
Long COVID Transformed My Sister into a Turtle
Written by a mom living with disabling Long COVID.
Order at: www.dottieloni.com
Share these books to help families be seen & understood. #LongCOVID, #MECFS
Cover art and a few pages of Long COVID Transformed My Mommy and Long COVID Transformed My Sister into a Turtle. Includes illustrations of a green turtle with headphones and sunglasses, A rainbow striped scared Zebra and the eyes of a lion, two brown-skinned, brown-haired kids playing a game of memory, a rainbow unicorn.
January 29, 2026 at 6:15 PM
sueponcin.com
One infection = 5 years disabled

This is a majority group I wish I could be excluded from.
thesicktimes.org The Sick Times @thesicktimes.org · 14d
😷 A study found that a majority of people with Long COVID did not recover

💰 Some researchers in Australia are getting a small boost in Long COVID funding

💊 The biotech company Invivyd is advancing research of a COVID-19 monoclonal antibody

#LongCOVID research updates: bit.ly/49QCdNm
A photo of the Opera House in Sydney, Australia. The building, which resembles white sails, its lit by orange sunlight and contrasted with a blue sky. Two people in the distance take photos of the building. The text reads, “The Sick Times. Long COVID research updates. A large prospective cohort study found that a majority of people with Long COVID did not recover. Some researchers in Australia are getting a small boost in Long COVID funding. The biotech company Invivyd is advancing research of a COVID-19 monoclonal antibody called VYD2311.” T A large prospective cohort study published in Infectious Diseases found that a majority of people with Long COVID did not recover. Of the 3,590 individuals with Long COVID included in the U.K. study, only around 33% achieved “satisfactory recovery.” Still, the study did not account for reinfections, and other studies have found an even slimmer recovery rate of only 6–9% in the first 2–3 years. The authors concluded that people with Long COVID in their cohort had significant and prolonged functional impairment, and that a majority are “of working age.” Some researchers in Australia are getting a small boost in Long COVID funding. Three projects at the University of New South Wales won grants totalling $4.7 million AUD ($3.3 million USD) to study the disease and improve patient care. One of those projects is the SAGE Trial, which aims to educate primary care providers about Long COVID, while other funding will support diagnostic and clinical research. In addition, a professor at Melbourne’s La Trobe University received $1 million AUD ($697,000 USD) in funding for the CRISP Project to study biomarkers for the disease linked to “food and drink sensitivity.” The biotech company Invivyd is advancing research of a COVID-19 monoclonal antibody called VYD2311, designed to improve upon the currently-available Pemgarda. A phase three clinical trial testing the product’s ability to prevent acute COVID-19 is currently recruiting in 20 locations across 16 states. And the company announced last week that it has planned a phase two trial of the drug for treating Long COVID and Post-COVID Vaccine Syndrome, expected to start “by mid-2026.” Researchers previously discussed this potential trial at a National Institutes of Health workshop last fall, but it is proceeding without NIH funding.
January 30, 2026 at 1:45 AM
sueponcin.com
For all the dynamically disabled people out there…….

youtube.com/watch?v=cG2u...
Shrinking — Michael J. Fox on the Truth About Parkinson's | Behind the Scenes | Apple TV
YouTube video by Apple TV
youtube.com
January 29, 2026 at 6:42 PM
sueponcin.com
Reverse-LC clinical trial for Long Covid is expanding to more enrollment sites!

Per the interest form, you have 17 options, up from the original 5. Great news for those not well enough to travel.

redcap.vumc.org/surveys/?s=3...
Screenshot of the interest form listing enrollment sites. Two purple pills from the trial in my hand.
January 26, 2026 at 3:08 PM
sueponcin.com
One infection = 5 yrs of brain damage

Being dynamically disabled by Long Covid looks like……
January 25, 2026 at 11:55 PM
Reposted by Sue Poncin
chronicillness.bsky.social
when u fell like you're dying, find 2 friends who also feel like they're dying and form a die-angle mybodyistryingtokillme.com
January 24, 2026 at 10:45 PM
sueponcin.com
“Nearly 2% of the adult workforce in the U.S. is unable to work because of ME/CFS or long COVID, costing the economy between $30-50 billion annually in lost productivity and health care costs.”

🙋‍♀️

Me. Right here. Lost productivity.

And no, I had no prior history.

And no, I can’t try harder.
The effects of long COVID - Illinois Times, the capital city's weekly source of news, politics, arts, entertainment, culture
Though COVID deniers still exist, the COVID-19 pandemic wreaked havoc in our communities in 2020 and beyond. Those unfortunate enough to catch the original strain were more likely to die or be serious...
www.illinoistimes.com
January 23, 2026 at 4:46 AM
sueponcin.com
Not a fun party conversation but…

Long Covid f-ed up my brain and maybe it can be used for good.

“Data shows neurologic disorders cause more death, sickness, and disability than any other kind of illness or disease. The need for brain donation hasn’t been clearer, more urgent, or dire.”
New Year: New Hope - Brain Donor Project
World Mental Health Day–October 10—is an important reminder of just how many lives are touched by mental illness. While conversations about treatment, stigma, and support are necessary, it’s critical ...
braindonorproject.org
January 23, 2026 at 4:41 AM
Reposted by Sue Poncin
daniellebeckman.bsky.social
The 1968 flu pandemic occurred between 1968 and 1970 and killed up to 4 million people globally.
It is among the deadliest pandemics in history. Apparently, we didn't learn much because viral pandemics keep happening again and again and again...
#Airborne #Cleantheair
drpopcultureusa.bsky.social Dr Pop Culture USA @drpopcultureusa.bsky.social · 23d
Newsweek (January 20, 1969)
January 21, 2026 at 3:44 AM
sueponcin.com
In honor of my five year Long Covid anniversary, please help spread awareness by sharing my story far and wide. Too many people still don’t know about Long Covid and dynamic disabilities.

Book: a.co/d/5Gr1mGS

Blog: www.sueponcin.com

T-shirt: dynamically-disabled.printify.me
My book - In the Space Between: finding rays of hope through long covid The title is written at the top of picture my brother in law took in his backyard of a double rainbow in the Sonoran desert. Front of a royal blue tee with a baseball-ish type logo Dynamically Disabled in all caps A tail off the last letter with the chronic condition - this version is “ME/CFS” The back of each Dynamically Disabled tee Stop the Stigma of Chromic Illness “They” need to try harder “They” are faking “They” want a handout “They” is “ME”
January 19, 2026 at 3:17 PM
Reposted by Sue Poncin
longcovidsupport.bsky.social
Today we’re launching #ForThoseWhoCant, our new fundraising campaign.

It’s about making fundraising more accessible, with ideas and guidance for friends, family, and loved ones who want to support our work.

Email [email protected] or click here for more: www.longcovid.org/get-involved...
January 16, 2026 at 11:01 AM
sueponcin.com
My psyche feels like it’s gone rounds with Mike Tyson because of uneven recovery and setbacks.

Cue Chumbawamba singing
“I get knocked down”

My Long Covid dynamic disablity stop me from joining:

“He drinks a whiskey drink
He drinks a Vodka drink
He drinks a Lager drink
He drinks a cider drink”
chicago.suntimes.com Chicago Sun-Times @chicago.suntimes.com · 27d
Researchers at Northwestern University used a smartphone app to follow patients with neurological symptoms stemming from long COVID. They found that even those whose symptoms have improved suffer setbacks and an uneven recovery.
Northwestern study of long COVID patients shows how an app can track recovery
chicago.suntimes.com
January 17, 2026 at 5:31 AM
sueponcin.com
Truth ⬇️
ancirabecky.bsky.social Becky Ancira Robertson @ancirabecky.bsky.social · 27d
There is a 3rd category- Those who don't know what ails them is long covid. Chronically ill, tachycardia, vasculitis, brain damage, vision/hearing impairment, POTS/PEM.. symptoms miscategorized as something else.
drinfosec.bsky.social Christophe Veltsos @drinfosec.bsky.social · 27d
🎯post by @putrinolab.bsky.social on XTwitter, commenting on one of @1goodtern.bsky.social's short 🧵

"Separating the world into 'people who have #LongCovid' and 'people who don't have LC YET' is a sobering but necessary framing for anyone..."

The underlying 🧵
threadreaderapp.com/thread/20119...
January 17, 2026 at 5:19 AM
sueponcin.com
One infection = Five years disabled

Long Covid ripped out of my life and it took me 4+ years and much therapy to accept my dynamic disability and unknown timeline and find a way to live in this new reality.
thesicktimes.org The Sick Times @thesicktimes.org · 27d
"Like so many people who have had Long COVID, [I’ve had] this sort of slow realization... unsure if something is temporary or permanent… It took me a long time to feel comfortable saying that [I am disabled]."

Read @betsyladyzhets.bsky.social's Q&A with @daveruder.bsky.social bit.ly/4pO6Kjr
Dave Ruder, a man wearing a respirator and glasses, with shoulder-length hair, is surrounded by cartoon images of a red footed duck, James Worthy, a can of seltzer and a bee, and a sign that says “Don’t touch me.” There’s a music player with his album imposed on top of the other images. The text reads, “The Sick Times. Composing the “Long COVID album”: An interview with Dave Ruder. By Betsy Ladyzhets.” "There’s a way that, I think, particularly for sick artists, for disabled artists, having that feeling of someone taking you seriously and not being alone in your illness and in your ailment is one of the best things that we can provide." - Dave Ruder, Composing the “Long COVID album”: An interview with Dave Ruder
January 17, 2026 at 1:05 AM
sueponcin.com
Perhaps I should add “clock drawing” to my Long Covid therapy to track my long term neurocognitive demise.
A screenshot of three clocks - one drawn by a healthy patient, Alzheimer’s patient, and Parkinson’s patient.
January 15, 2026 at 2:23 PM
sueponcin.com
“Medicine has transformed radically since Hippocrates.” (337 BC)

But not nearly enough.

“There remains reticence to embrace the ways in which viral infections fuel long-term neurological and systemic disorders that can radically transform someone’s health.”

1 infection = 5 years disabled
January 9, 2026 at 4:48 AM
sueponcin.com
Dynamically disabled by Long Covid:

“Many disabilities are not predictable in their specific impact on mobility from day to day. And the airport experience itself is not predictable in mobility barriers or obstacles”

I spread awareness as I travel:
dynamically-disabled.printify.me/category/all/1
Front of a royal blue tee with a baseball-ish type logo Dynamically Disabled in all caps A tail off the last letter with the chronic condition - this version is “ME/CFS” The back of each Dynamically Disabled tee Stop the Stigma of Chromic Illness “They” need to try harder “They” are faking “They” want a handout “They” is “ME” Me wearing a mask and a light purple tee with a baseball-ish type logo Dynamically Disabled in all caps A tail off the last letter with the chronic condition - this version is “Long Covid”
January 7, 2026 at 3:55 AM