Sue Poncin
@sueponcin.com
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
Before Jan 2021: overachiever, #MathSky Calculus teacher, Mom Uber driver
www.sueponcin.com
In The Space Between: https://a.co/d/0fkSZMd
Pinned
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
#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
Keeping eyes and ears open for a Midwest version. Anything to help scientists and researchers find answers to the Long Covid mystery.
7) Another pilot study collects postmortem tissue. It created the logistics for rapid autopsies of individuals who are being followed with long COVID in the Washington-Maryland-Virginia area.
Link:
Link:
Development of a long Covid postmortem tissue bank with pathological & molecular analyses - PolyBio Research Foundation
Project summary:A pilot study to develop the logistics for rapid autopsy of individuals who are being followed with long COVID in...
polybio.org
November 24, 2025 at 12:43 AM
Keeping eyes and ears open for a Midwest version. Anything to help scientists and researchers find answers to the Long Covid mystery.
Is it just me or do other Long Covid suffers read headlines like this one and think:
“No shit Sherlock! Welcome to the party. We’ve been telling you this for yearsssss.”
Followed immediately by gratitude for scientists investigating Long Covid to someday lead to treatments.
“No shit Sherlock! Welcome to the party. We’ve been telling you this for yearsssss.”
Followed immediately by gratitude for scientists investigating Long Covid to someday lead to treatments.
November 22, 2025 at 4:03 AM
Is it just me or do other Long Covid suffers read headlines like this one and think:
“No shit Sherlock! Welcome to the party. We’ve been telling you this for yearsssss.”
Followed immediately by gratitude for scientists investigating Long Covid to someday lead to treatments.
“No shit Sherlock! Welcome to the party. We’ve been telling you this for yearsssss.”
Followed immediately by gratitude for scientists investigating Long Covid to someday lead to treatments.
Long Covid and Neurofeedback - an essay on my blog describing my last year of therapy.
#NeuroCovid #LongCovid
www.sueponcin.com/blog/neurofe...
#NeuroCovid #LongCovid
www.sueponcin.com/blog/neurofe...
November 22, 2025 at 12:37 AM
Long Covid and Neurofeedback - an essay on my blog describing my last year of therapy.
#NeuroCovid #LongCovid
www.sueponcin.com/blog/neurofe...
#NeuroCovid #LongCovid
www.sueponcin.com/blog/neurofe...
Anyone whose handle is @sfdirewolf.bsky.social is a BAMF.
I’m proud to have followed this disabled oracle and thankful for the reminder to keep sharing our stories.
I’m proud to have followed this disabled oracle and thankful for the reminder to keep sharing our stories.
“Don’t let the bastards grind you down. I love you all.”
November 15, 2025 at 3:28 PM
Anyone whose handle is @sfdirewolf.bsky.social is a BAMF.
I’m proud to have followed this disabled oracle and thankful for the reminder to keep sharing our stories.
I’m proud to have followed this disabled oracle and thankful for the reminder to keep sharing our stories.
My fellow chronic illness & Long Covid sufferers who don’t have the words to describe the mind numbing fatigue - listen to Lance’s description in Nevertheless, Persisting with Amy Blackstone. (starts at 7:15)
Normal words cannot be used for abnormal things.
open.spotify.com/episode/74CF...
Normal words cannot be used for abnormal things.
open.spotify.com/episode/74CF...
November 15, 2025 at 3:20 PM
My fellow chronic illness & Long Covid sufferers who don’t have the words to describe the mind numbing fatigue - listen to Lance’s description in Nevertheless, Persisting with Amy Blackstone. (starts at 7:15)
Normal words cannot be used for abnormal things.
open.spotify.com/episode/74CF...
Normal words cannot be used for abnormal things.
open.spotify.com/episode/74CF...
Patricia Lockwood wondered if her Long Covid book was “the book that no one wants to read. This is the time no one wants to read about.”
Her friend replied, “Sometimes someone has to come along and put a wreath on the tomb of the time.”
Here’s my wreath.
To raise awareness.
You don’t want LC.
Her friend replied, “Sometimes someone has to come along and put a wreath on the tomb of the time.”
Here’s my wreath.
To raise awareness.
You don’t want LC.
In The Space Between: Finding Rays Of Hope Through Long COVID.: Poncin, Sue: 9798990085206: Amazon.com: Books
In The Space Between: Finding Rays Of Hope Through Long COVID. [Poncin, Sue] on Amazon.com. *FREE* shipping on qualifying offers. In The Space Between: Finding Rays Of Hope Through Long COVID.
a.co
November 15, 2025 at 3:39 AM
Patricia Lockwood wondered if her Long Covid book was “the book that no one wants to read. This is the time no one wants to read about.”
Her friend replied, “Sometimes someone has to come along and put a wreath on the tomb of the time.”
Here’s my wreath.
To raise awareness.
You don’t want LC.
Her friend replied, “Sometimes someone has to come along and put a wreath on the tomb of the time.”
Here’s my wreath.
To raise awareness.
You don’t want LC.
More hope for Long Covid🌈 from Stellenbosch University;
“identified the most predictive biomarker combinations, enhancing diagnostic reliability and paving the way for personalized medicine approaches.
www.su.ac.za/en/faculties...
“identified the most predictive biomarker combinations, enhancing diagnostic reliability and paving the way for personalized medicine approaches.
www.su.ac.za/en/faculties...
Scientists reveal another piece in Long COVID puzzle
New study reveals a structural association between circulating microclots and neutrophil extracellular traps (NETs) in patients with Long COVID. When dysregulated, this interaction may become pathogen...
www.su.ac.za
November 15, 2025 at 1:46 AM
More hope for Long Covid🌈 from Stellenbosch University;
“identified the most predictive biomarker combinations, enhancing diagnostic reliability and paving the way for personalized medicine approaches.
www.su.ac.za/en/faculties...
“identified the most predictive biomarker combinations, enhancing diagnostic reliability and paving the way for personalized medicine approaches.
www.su.ac.za/en/faculties...
Internet Gold!
Take this man to Chez Paul. He and his brother would like to dine.
Take this man to Chez Paul. He and his brother would like to dine.
What's from Chicago, hates Illinois Nazis, and is holy as fuck?
It's the Pope in 1982.
It's the Pope in 1982.
November 13, 2025 at 2:17 AM
Internet Gold!
Take this man to Chez Paul. He and his brother would like to dine.
Take this man to Chez Paul. He and his brother would like to dine.
Reverse-LC trial at Univ. Of Minnesota four month visit ☑️
Happy to report as of today there are 110 Long Covid participants over four sites. The goal is 550.
The trial coordinator I met with said there is talk of adding 13 more sites for accessibility.
Hope 🌈🌈🌈
Happy to report as of today there are 110 Long Covid participants over four sites. The goal is 550.
The trial coordinator I met with said there is talk of adding 13 more sites for accessibility.
Hope 🌈🌈🌈
November 11, 2025 at 8:56 PM
Reverse-LC trial at Univ. Of Minnesota four month visit ☑️
Happy to report as of today there are 110 Long Covid participants over four sites. The goal is 550.
The trial coordinator I met with said there is talk of adding 13 more sites for accessibility.
Hope 🌈🌈🌈
Happy to report as of today there are 110 Long Covid participants over four sites. The goal is 550.
The trial coordinator I met with said there is talk of adding 13 more sites for accessibility.
Hope 🌈🌈🌈
My conundrum single day with Long Covid ⬇️
“In an attempt to get fit I could do long term damage to my body, and in an attempt to avoid that I could do long term damage to my body.”
“In an attempt to get fit I could do long term damage to my body, and in an attempt to avoid that I could do long term damage to my body.”
On Hello Computer newsletter this week: "How am I doing after 18 months of Long Covid or ME/CFS?"
Read and sign up: pete.news/hellocompute...
#HelloComputer #MECFS
Read and sign up: pete.news/hellocompute...
#HelloComputer #MECFS
ME/CFS Update
How am I doing after 18 months of Long Covid or ME/CFS?
pete.news
November 10, 2025 at 1:23 PM
My conundrum single day with Long Covid ⬇️
“In an attempt to get fit I could do long term damage to my body, and in an attempt to avoid that I could do long term damage to my body.”
“In an attempt to get fit I could do long term damage to my body, and in an attempt to avoid that I could do long term damage to my body.”
“This is the book that no one wants to read, right? This is the time no one wants to read about. This is the thing we were all warned against.
And Sally said ‘Sometimes someone has to come along and put a wreath on the tomb of the time.’”
@tricialockwood.bsky.social
Thank you!
And Sally said ‘Sometimes someone has to come along and put a wreath on the tomb of the time.’”
@tricialockwood.bsky.social
Thank you!
November 9, 2025 at 9:47 PM
“This is the book that no one wants to read, right? This is the time no one wants to read about. This is the thing we were all warned against.
And Sally said ‘Sometimes someone has to come along and put a wreath on the tomb of the time.’”
@tricialockwood.bsky.social
Thank you!
And Sally said ‘Sometimes someone has to come along and put a wreath on the tomb of the time.’”
@tricialockwood.bsky.social
Thank you!
Reposted by Sue Poncin
Long Covid is common - ~1 in 5 people have it, and it's on the rise. Reinfections add to the burden. It's the most common chronic condition in children.
Actual coverage on this at last from CBC
Actual coverage on this at last from CBC
November 8, 2025 at 4:44 PM
Long Covid is common - ~1 in 5 people have it, and it's on the rise. Reinfections add to the burden. It's the most common chronic condition in children.
Actual coverage on this at last from CBC
Actual coverage on this at last from CBC
Perhaps my state & city as well as and our National departments of health will follow Durham County’s lead on educating & spreading awareness of Long Covid.
@idph.bsky.social
@cdph.bsky.social
@hhsofficial.bsky.social @alt-hhs.altgov.info
@idph.bsky.social
@cdph.bsky.social
@hhsofficial.bsky.social @alt-hhs.altgov.info
Long COVID includes a wide range of symptoms and can affect anyone, no matter your age or other health conditions. Learn more, and prevent #LongCOVID by preventing COVID-19!
November 8, 2025 at 7:06 PM
Perhaps my state & city as well as and our National departments of health will follow Durham County’s lead on educating & spreading awareness of Long Covid.
@idph.bsky.social
@cdph.bsky.social
@hhsofficial.bsky.social @alt-hhs.altgov.info
@idph.bsky.social
@cdph.bsky.social
@hhsofficial.bsky.social @alt-hhs.altgov.info
My Long Covid rehab doc predicted it would take 10 years to have answers.
That was five yrs ago.
Hope is studies likes this 🌈
“These findings may help explain why females are more susceptible to LC and offer insights into biological pathways that could be targeted in future interventions.”
That was five yrs ago.
Hope is studies likes this 🌈
“These findings may help explain why females are more susceptible to LC and offer insights into biological pathways that could be targeted in future interventions.”
Integrated immune, hormonal, and transcriptomic profiling reveals sex-specific dysregulation in long COVID patients with ME/CFS
Shahbaz et al. find that female long COVID patients with ME/CFS exhibit heightened
inflammation, altered hematopoiesis, disrupted hormone levels, and neuroinflammatory
gene signatures. In parallel, ou...
www.cell.com
November 8, 2025 at 10:31 AM
My Long Covid rehab doc predicted it would take 10 years to have answers.
That was five yrs ago.
Hope is studies likes this 🌈
“These findings may help explain why females are more susceptible to LC and offer insights into biological pathways that could be targeted in future interventions.”
That was five yrs ago.
Hope is studies likes this 🌈
“These findings may help explain why females are more susceptible to LC and offer insights into biological pathways that could be targeted in future interventions.”
It still surprises me when someone says “What’s Long Covid?”
And it motivates me to keep sharing my story. The more we can put a personal face to the unknown, the more awareness we can raise.
Awareness ➡️ research ➡️ treatment
a.co/d/gpSIegA
And it motivates me to keep sharing my story. The more we can put a personal face to the unknown, the more awareness we can raise.
Awareness ➡️ research ➡️ treatment
a.co/d/gpSIegA
November 6, 2025 at 11:15 PM
It still surprises me when someone says “What’s Long Covid?”
And it motivates me to keep sharing my story. The more we can put a personal face to the unknown, the more awareness we can raise.
Awareness ➡️ research ➡️ treatment
a.co/d/gpSIegA
And it motivates me to keep sharing my story. The more we can put a personal face to the unknown, the more awareness we can raise.
Awareness ➡️ research ➡️ treatment
a.co/d/gpSIegA
University of Otago said participants told the researchers: 'I've tried over 20 different forms of treatment and therapy'; and 'I almost wish I'd been in a car accident because then at least I would have some support'.”
Impossible situation for Long Covid patients when doctors are at loss.
Impossible situation for Long Covid patients when doctors are at loss.
I thought I'd signed off for the night, but this piece from New Zealand on how the healthcare system is failing persons w/ #LongCovid is outstanding.
Once more for the cheap seats: ANYONE who's had Covid can get Long Covid.
www.rnz.co.nz/news/nationa...
Once more for the cheap seats: ANYONE who's had Covid can get Long Covid.
www.rnz.co.nz/news/nationa...
Researchers say healthcare system failing long Covid patients
A researcher is calling on the government to provide dedicated funding for long Covid.
www.rnz.co.nz
November 6, 2025 at 3:44 AM
University of Otago said participants told the researchers: 'I've tried over 20 different forms of treatment and therapy'; and 'I almost wish I'd been in a car accident because then at least I would have some support'.”
Impossible situation for Long Covid patients when doctors are at loss.
Impossible situation for Long Covid patients when doctors are at loss.
Chills.
November 5, 2025 at 3:08 PM
Chills.
This ⬇️
Reason #9,306 to Stop the Stigma of chronic illness.
It is not in your head.
You are not making it up.
Your symptoms are real and valid.
Reason #9,306 to Stop the Stigma of chronic illness.
It is not in your head.
You are not making it up.
Your symptoms are real and valid.
Just because we don't currently know the cause(s) for certain conditions or symptoms, it doesn't mean that there isn't one.
It just means we haven't found it yet... And we may never do so given how complex bodies are.
It just means we haven't found it yet... And we may never do so given how complex bodies are.
November 5, 2025 at 2:58 PM
This ⬇️
Reason #9,306 to Stop the Stigma of chronic illness.
It is not in your head.
You are not making it up.
Your symptoms are real and valid.
Reason #9,306 to Stop the Stigma of chronic illness.
It is not in your head.
You are not making it up.
Your symptoms are real and valid.
A mask can save you from a lifetime of disability.
One infection = five years disabled.
You don’t want Long Covid.
Let me be your cautionary tale.
a.co/d/8N3adEJ
One infection = five years disabled.
You don’t want Long Covid.
Let me be your cautionary tale.
a.co/d/8N3adEJ
Tom Hanks explains to Stephen Colbert why he masks on the subway:
"I'm doing a play right now so I cannot get sick... I've had COVID enough in my life, I don't need to do that again. So I'm wearing this for health reasons."
Thank you Tom! Masks are still a key part of public health.
"I'm doing a play right now so I cannot get sick... I've had COVID enough in my life, I don't need to do that again. So I'm wearing this for health reasons."
Thank you Tom! Masks are still a key part of public health.
November 4, 2025 at 11:18 PM
A mask can save you from a lifetime of disability.
One infection = five years disabled.
You don’t want Long Covid.
Let me be your cautionary tale.
a.co/d/8N3adEJ
One infection = five years disabled.
You don’t want Long Covid.
Let me be your cautionary tale.
a.co/d/8N3adEJ
Reposted by Sue Poncin
The World Health Network (WHN) is gathering stories to raise awareness about Long COVID. We want to hear from those with lived experience — patients, caregivers, clinicians, and advocates — so we can share your stories and help others understand the impact of Long COVID.
November 4, 2025 at 3:57 PM
The World Health Network (WHN) is gathering stories to raise awareness about Long COVID. We want to hear from those with lived experience — patients, caregivers, clinicians, and advocates — so we can share your stories and help others understand the impact of Long COVID.
“It’s not all in their heads” was then, and is still now, a dangerous tagline.
We who suffer from Long Covid are still fighting to Stop the Stigma with the public and the medical community.
We cannot try harder.
We are not faking.
We are not abusing the system.
1 infection = 5 yrs disabled
We who suffer from Long Covid are still fighting to Stop the Stigma with the public and the medical community.
We cannot try harder.
We are not faking.
We are not abusing the system.
1 infection = 5 yrs disabled
On this day in COVID history, November 4, 2021:
Is long Covid all in your head? Maybe. But that's what makes it real.
Source: NBC News
https://www.nbcnews.com/health/health-news/covid-invades-brain-dealing-long-term-coronavirus-rcna4414
Is long Covid all in your head? Maybe. But that's what makes it real.
Source: NBC News
https://www.nbcnews.com/health/health-news/covid-invades-brain-dealing-long-term-coronavirus-rcna4414
November 4, 2025 at 9:28 PM
“It’s not all in their heads” was then, and is still now, a dangerous tagline.
We who suffer from Long Covid are still fighting to Stop the Stigma with the public and the medical community.
We cannot try harder.
We are not faking.
We are not abusing the system.
1 infection = 5 yrs disabled
We who suffer from Long Covid are still fighting to Stop the Stigma with the public and the medical community.
We cannot try harder.
We are not faking.
We are not abusing the system.
1 infection = 5 yrs disabled
“These images clearly portray adaptation, despair, persistence, & quiet revolt of these participants.
A rare outing in someone’s new wheelchair.
A medical journal documenting continuous pain for dismissive doctors.”
Sharing Long Covid stories: awareness & empathy
➡️
research & treatment.
A rare outing in someone’s new wheelchair.
A medical journal documenting continuous pain for dismissive doctors.”
Sharing Long Covid stories: awareness & empathy
➡️
research & treatment.
The Peak: 'What we must confront: Living with Long COVID'
'This photography exhibition by long-haulers is a refusal to let suffering be forgotten'
'Long COVID affects one in nine Canadians'
the-peak.ca/2025/11/what...
'This photography exhibition by long-haulers is a refusal to let suffering be forgotten'
'Long COVID affects one in nine Canadians'
the-peak.ca/2025/11/what...
What we must confront: Living with Long COVID
By: Ashima Shukla, Staff Writer The first winter of the pandemic, I was in Shanghai visiting my family when the first news reports began circulating — something about a new pneumonia, a city in l…
the-peak.ca
November 4, 2025 at 9:39 AM
“These images clearly portray adaptation, despair, persistence, & quiet revolt of these participants.
A rare outing in someone’s new wheelchair.
A medical journal documenting continuous pain for dismissive doctors.”
Sharing Long Covid stories: awareness & empathy
➡️
research & treatment.
A rare outing in someone’s new wheelchair.
A medical journal documenting continuous pain for dismissive doctors.”
Sharing Long Covid stories: awareness & empathy
➡️
research & treatment.
LFG! 🌈🌈🌈🌈
Scripps Research has launched an at-home #LongCOVID clinical trial to test the drug tirzepatide. Co-lead @julialmv.bsky.social writes that these types of decentralized trials will accelerate research and make clinical trials more accessible. bit.ly/4nA02wc
November 3, 2025 at 10:53 PM
LFG! 🌈🌈🌈🌈
We shouldn’t need a blood test to Stop the Stigma of chronic illness, but I’m grateful one has been discovered.
Science is catching up to what those who’s suffer have long known:
We can’t try harder.
We aren’t faking.
We aren’t gaming the system.
ME/CFS & Long Covid are real & debilitating.
Science is catching up to what those who’s suffer have long known:
We can’t try harder.
We aren’t faking.
We aren’t gaming the system.
ME/CFS & Long Covid are real & debilitating.
Well, this is some good news.
Breakthrough blood test finally confirms Chronic Fatigue Syndrome www.sciencedaily.com/releases/202...
Breakthrough blood test finally confirms Chronic Fatigue Syndrome www.sciencedaily.com/releases/202...
Breakthrough blood test finally confirms Chronic Fatigue Syndrome
A team of scientists has developed a highly accurate blood test for Chronic Fatigue Syndrome. The test reads tiny DNA patterns that reveal the biological signature of the illness. For millions who’ve ...
www.sciencedaily.com
November 3, 2025 at 10:38 PM
We shouldn’t need a blood test to Stop the Stigma of chronic illness, but I’m grateful one has been discovered.
Science is catching up to what those who’s suffer have long known:
We can’t try harder.
We aren’t faking.
We aren’t gaming the system.
ME/CFS & Long Covid are real & debilitating.
Science is catching up to what those who’s suffer have long known:
We can’t try harder.
We aren’t faking.
We aren’t gaming the system.
ME/CFS & Long Covid are real & debilitating.
Hope is a verb 🌈🌈🌈
“Understanding the biological pathways opens the door to developing targeted treatments and identifying which patients might benefit most from specific therapies.”
“Understanding the biological pathways opens the door to developing targeted treatments and identifying which patients might benefit most from specific therapies.”
Well, this is some good news.
Breakthrough blood test finally confirms Chronic Fatigue Syndrome www.sciencedaily.com/releases/202...
Breakthrough blood test finally confirms Chronic Fatigue Syndrome www.sciencedaily.com/releases/202...
Breakthrough blood test finally confirms Chronic Fatigue Syndrome
A team of scientists has developed a highly accurate blood test for Chronic Fatigue Syndrome. The test reads tiny DNA patterns that reveal the biological signature of the illness. For millions who’ve ...
www.sciencedaily.com
November 3, 2025 at 10:34 PM
Hope is a verb 🌈🌈🌈
“Understanding the biological pathways opens the door to developing targeted treatments and identifying which patients might benefit most from specific therapies.”
“Understanding the biological pathways opens the door to developing targeted treatments and identifying which patients might benefit most from specific therapies.”