Sue Poncin
@poncin-sue.bsky.social
1.8K followers 2K following 720 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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poncin-sue.bsky.social
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.
poncin-sue.bsky.social
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 🌈
poncin-sue.bsky.social
Neurofeedback helped with my ability to read and noise sensitivity although it wasn’t a quick fix.
poncin-sue.bsky.social
Still true four years later.

Because of…..
Stigma. Deniers. Lack of knowledge.

Continue to share your Long Covid stories to help educate others.

My story: a.co/d/0Rz6Hjx
poncin-sue.bsky.social
Ultimately, we hope this work not only contributes both to a reliable diagnostic tool and a deeper understanding of ME/CFS but also continues to bring understanding of the biological problems that result in the lived experiences of these patients”

ME/CFS help = Long COVID help
bhanlon15.bsky.social
Discover Magazine: 'Newly Identified Biomarkers Could Help Diagnose Chronic Fatigue Syndrome'

"ME/CFS affects a lot of different parts of the body...analyzing plasma gives you access to what's going on in those different parts." - Maureen Hanson

www.discovermagazine.com/newly-identi...
Newly Identified Biomarkers Could Help Diagnose Chronic Fatigue Syndrome
Learn more about the tests researchers are developing with machine learning tools that could be key in diagnosing chronic fatigue syndrome.
www.discovermagazine.com
poncin-sue.bsky.social
“Co-payments, reduced working hours, and expensive treatments not fully covered by insurance. What begins as a manageable strain can escalate”

Each year, Long Covid exponentially hurts our financial situation. We didn’t know we needed a long term plan. No one predicted “long” meant 5+ yrs
poncin-sue.bsky.social
Chronic illness steals worth, love, & ability. It takes community, family, & therapy to rebuild a stripped away sense of self. Do not feel less than because you struggle when you’re ripped out of your life.

Share your story to let others know they are not alone navigating the unknown.

My story:
poncin-sue.bsky.social
💯💯💯💯💯💯
poncin-sue.bsky.social
We need to support each other through our transition from overachieving and always saying yes to taking care of ourselves. I’m 4.5 years in trying to reverse a lifetime of beliefs.

Repeat over and over…….
I am more than my accomplishments.
I am worthy of love for just being me.
poncin-sue.bsky.social
“Our findings clearly demonstrate that Long COVID brain fog should be recognized as a legitimate clinical condition. This could encourage the healthcare industry to accelerate the development of diagnostic and therapeutic approaches for this disorder”

Hope looks like identification and treatment 🌈
thecovidinfoguy.bsky.social
Scientists Finally Reveal Biological Basis of Long COVID Brain Fog.

Patients with brain fog may have disrupted AMPA receptor (AMPAR) expression—key molecules for memory and learning. Imaging of Long COVID patients showed elevated AMPAR density tied to more severe cognitive impairment.
Scientists Finally Reveal Biological Basis of Long COVID Brain Fog
Researchers employed a specialized brain imaging technique to identify a potential biomarker and therapeutic target for Long COVID. More than four years after the onset of the COVID-19 pandemic, scien...
scitechdaily.com
poncin-sue.bsky.social
Sharing our stories helps raise awareness. You never know who your story will reach or who it will help. Together, we cannot be ignored.

My story: a.co/d/datEOs4
Reposted by Sue Poncin
chicagotribune.com
Children are twice as likely to develop long COVID after two COVID-19 infections, compared with children who’ve only had COVID-19 once, according to a new study co-authored by a doctor at Lurie Children’s Hospital.
Risk of long COVID in children doubles after second COVID-19 infection, according to study by Lurie doctor
Risk of long COVID in children doubles after second COVID-19 infection, according to study co-authored by Lurie doctor.
trib.al
poncin-sue.bsky.social
Grateful researchers are looking for Long Covid identifiers, aka a needle in the haystack….

“testing for 7000 plasma proteins, a few dozen plasma proteins were identified that were expressed differentially in the plasma of adult patients with Neural Post-acute sequelae of COVID-19 (Neuro-PASC)”
atranscendedman.bsky.social
Northwestern University studied 48 people with neurological Long COVID.

Three blood proteins, C5a, TGFβ1, and Gliomedin, identified brain fog with 94% sensitivity and 86% specificity.

This points to a potential diagnostic test.

www.sciencedirect.com/science/arti...
Blood Diagnostic Biomarkers for neurologic manifestations of Long COVID.
SARS-CoV-2 responsible for COVID-19 caused a global pandemic, with billions of infections, millions of deaths and ongoing manifestations post COVID-19…
www.sciencedirect.com
Reposted by Sue Poncin
petermorley.bsky.social
To my Lupus, chronic illness, chronic pain, cancer survivors, rare diseases & disability communities:

NEVER FORGET: WE'RE NOT DATA, WE'RE FLESH & BLOOD! YOUR LIFE IS VALUED OFF THE CHARTS! 🙏💜
poncin-sue.bsky.social
Hope is a verb.

Jonathan Toews returning to the ice gives hope to all of us sidelined by Long Covid. 🌈🌈

I sobbed the night he last played in Chicago knowing how hard it is to walk away from the career you love. This faceoff comes after two years of never giving up to comeback!
wpgmurat.bsky.social
Jonathan Toews wins his first faceoff as a Winnipeg Jet
poncin-sue.bsky.social
I greatly appreciated “the team exposed the blood samples taken before and after exercise to elements” to make their findings as validation of what we know in our souls as we lie there, unable to move or communicate during PEM crash.

Validation something is wrong.
Validation of our disability.
poncin-sue.bsky.social
“While what gives rise to ME/CFS remains obscure, understanding the ways it disrupts the body’s various biological processes on the molecular level is revealing biomarkers for specific ME/CFS subtypes that may inform clinical research and lead to targeted interventions,” Lipkin says.
Overactive immune responses in ME/CFS
Scientists found signs of overactive immune responses in people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
www.nih.gov
poncin-sue.bsky.social
It was absolutely unbearable until I started HRT and had a uterine ablation. Long Covid left me with nothing left!
poncin-sue.bsky.social
Pyramidal neurons lost = Long Covid?

Pyramidal neurons functions:
- send signals down the spinal cord to control voluntary walking, running, and writing
- help consolidate new information and retrieve it later
- crucial for decision-making, planning, and attention

All signs point to yes. #disabled
daniellebeckman.bsky.social
For students: how can we quantify neurodegeneration using #microscopy? One way is to use a marker like 🟡 below (SMI32). It identifies a population of pyramidal neurons that is lost early in neurodegenerative diseases like Alzheimer and Parkinson. And after some viral infections 👀👀
#Neuroscience
Pyramidal neurons microscopy image
poncin-sue.bsky.social
I’m in the study! At Univ of Minnesota site. 🤞🤞🤞🤞🤞
Thank you for sharing your journey 💗
poncin-sue.bsky.social
Could the images be used for a public service announcement for why you don’t want Covid?

This is your brain.

This is your brain with Covid.

Thank you for the stunning visualization, as usual!
daniellebeckman.bsky.social
Microglia Megazord activated! Check these brain immune cells🔵 responding to #SARSCoV2 infection. Compare to the image on the right from a control.
Neurons: 🟠NeuN, Microglia: 🔵Iba

Do you know what caused this? COVID-19
Do you know what did not cause this? Vaccines.
#FluorescenceFriday #NeuroCovid
Confocal microscopy photo - infected olfactory cortex Confocal microscopy photo - control olfactory cortex
poncin-sue.bsky.social
I hope sharing my Long Covid story raises awareness of rampant ableism, including my own.

Prior to becoming part of the chronic illness and disabled communities, I bought into the prosperity ideal of “I’m a good person, a healthy person, it won’t happen to me.”

Lies.

My story: a.co/d/afxN0Qf