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
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.”
If my story could be used as a Long Covid cautionary tale, at least something good would come from five long years.
I tried to write about energy limitations in such a way that the reader feels the impact and would hopefully say “I never want to be her” and stop rolling the dice.
a.co/d/i2cxQcw
I tried to write about energy limitations in such a way that the reader feels the impact and would hopefully say “I never want to be her” and stop rolling the dice.
a.co/d/i2cxQcw
November 3, 2025 at 10:16 PM
If my story could be used as a Long Covid cautionary tale, at least something good would come from five long years.
I tried to write about energy limitations in such a way that the reader feels the impact and would hopefully say “I never want to be her” and stop rolling the dice.
a.co/d/i2cxQcw
I tried to write about energy limitations in such a way that the reader feels the impact and would hopefully say “I never want to be her” and stop rolling the dice.
a.co/d/i2cxQcw
Nothing better than randomly picking up @bridgetcrocker.bsky.social book
@milkweededitions.bsky.social while visiting Univ of Minn for a Long Covid study and reading our lives intersected in CA.
Hubby & I saw the same sign when we rafted here with his buddies while at Edwards AFB.
#BookSky
@milkweededitions.bsky.social while visiting Univ of Minn for a Long Covid study and reading our lives intersected in CA.
Hubby & I saw the same sign when we rafted here with his buddies while at Edwards AFB.
#BookSky
November 3, 2025 at 1:20 PM
Nothing better than randomly picking up @bridgetcrocker.bsky.social book
@milkweededitions.bsky.social while visiting Univ of Minn for a Long Covid study and reading our lives intersected in CA.
Hubby & I saw the same sign when we rafted here with his buddies while at Edwards AFB.
#BookSky
@milkweededitions.bsky.social while visiting Univ of Minn for a Long Covid study and reading our lives intersected in CA.
Hubby & I saw the same sign when we rafted here with his buddies while at Edwards AFB.
#BookSky
“A sound democratic government owes people the truth about the potential long-term harms of COVID-19. Minimizing COVID-19 is not equitable or inclusive, it’s not democracy and it’s a violation of the centuries old social contract and a reversal of the decades of public health progress.”
"Minimizing COVID-19 is maximizing social harm"
"Governments, in the interest of maintaining the status quo, seem to be misleading people and hoping for the best."
Source: archive.li/aKlzJ
"Governments, in the interest of maintaining the status quo, seem to be misleading people and hoping for the best."
Source: archive.li/aKlzJ
November 3, 2025 at 3:39 AM
“A sound democratic government owes people the truth about the potential long-term harms of COVID-19. Minimizing COVID-19 is not equitable or inclusive, it’s not democracy and it’s a violation of the centuries old social contract and a reversal of the decades of public health progress.”
Dr. James C. Jackson of Vanderbilt University takeaway from today’s IACC Expert Panel on Long Covid and other chronic conditions:
Brain fog is not an accurate term. It needs to be referred to as brain damage.
Yup.
Brain fog is not an accurate term. It needs to be referred to as brain damage.
Yup.
October 31, 2025 at 9:23 PM
Dr. James C. Jackson of Vanderbilt University takeaway from today’s IACC Expert Panel on Long Covid and other chronic conditions:
Brain fog is not an accurate term. It needs to be referred to as brain damage.
Yup.
Brain fog is not an accurate term. It needs to be referred to as brain damage.
Yup.
Long Covid and Infection Associate Chronic Conditions hope looks like the expert panel at today’s case competition at University of Michigan 🌈🌈🌈
Exciting to hear the great minds committed to researching diagnosis, identification, and treatments
Exciting to hear the great minds committed to researching diagnosis, identification, and treatments
October 31, 2025 at 2:02 PM
Long Covid and Infection Associate Chronic Conditions hope looks like the expert panel at today’s case competition at University of Michigan 🌈🌈🌈
Exciting to hear the great minds committed to researching diagnosis, identification, and treatments
Exciting to hear the great minds committed to researching diagnosis, identification, and treatments
Reposted by Sue Poncin
The Long COVID Treatment Trial – Tirzepatide (LoCITT-T) is officially open for enrollment for people with Long COVID in:
Alabama, Alaska, California, Florida, Illinois, Indiana, Michigan, Ohio, Pennsylvania, Texas, Utah
longcovid.scripps.edu/locitt-t/?ut...
1/16
Alabama, Alaska, California, Florida, Illinois, Indiana, Michigan, Ohio, Pennsylvania, Texas, Utah
longcovid.scripps.edu/locitt-t/?ut...
1/16
LoCITT-T - Long COVID Treatment Trial
longcovid.scripps.edu
October 30, 2025 at 6:24 PM
The Long COVID Treatment Trial – Tirzepatide (LoCITT-T) is officially open for enrollment for people with Long COVID in:
Alabama, Alaska, California, Florida, Illinois, Indiana, Michigan, Ohio, Pennsylvania, Texas, Utah
longcovid.scripps.edu/locitt-t/?ut...
1/16
Alabama, Alaska, California, Florida, Illinois, Indiana, Michigan, Ohio, Pennsylvania, Texas, Utah
longcovid.scripps.edu/locitt-t/?ut...
1/16
Covid is not harmless.
My Long Covid symptoms mimic
Autism - sensitivity to stimuli
Stroke - speech & motor delay
Both conditions that involve the amygdala.
My dedication to awareness in hopes of preventing others from suffering is greater than my embarrassment of the brain damage I’ve incurred.
My Long Covid symptoms mimic
Autism - sensitivity to stimuli
Stroke - speech & motor delay
Both conditions that involve the amygdala.
My dedication to awareness in hopes of preventing others from suffering is greater than my embarrassment of the brain damage I’ve incurred.
October 31, 2025 at 12:43 AM
Covid is not harmless.
My Long Covid symptoms mimic
Autism - sensitivity to stimuli
Stroke - speech & motor delay
Both conditions that involve the amygdala.
My dedication to awareness in hopes of preventing others from suffering is greater than my embarrassment of the brain damage I’ve incurred.
My Long Covid symptoms mimic
Autism - sensitivity to stimuli
Stroke - speech & motor delay
Both conditions that involve the amygdala.
My dedication to awareness in hopes of preventing others from suffering is greater than my embarrassment of the brain damage I’ve incurred.
“We need to bring awareness. I think that’s the biggest thing,” says Dr. Catherine Clark.
Educating others about Long Covid involves more than sharing information. For the message to be effective and bring about real change, it’s important to create a personal connection.
Share your stories 🌈🌈
Educating others about Long Covid involves more than sharing information. For the message to be effective and bring about real change, it’s important to create a personal connection.
Share your stories 🌈🌈
CBC: 'Long COVID is underdiagnosed, researchers say, and there’s work to be done to change that'
'St. John’s hosted the 2025 Canadian Symposium on Long COVID earlier this month, a gathering of top researchers, clinicians, and people living with long COVID.'
www.cbc.ca/player/play/...
'St. John’s hosted the 2025 Canadian Symposium on Long COVID earlier this month, a gathering of top researchers, clinicians, and people living with long COVID.'
www.cbc.ca/player/play/...
Long COVID is underdiagnosed, researchers say, and there’s work to be done to change that
St. John’s hosted the 2025 Canadian Symposium on Long COVID earlier this month, a gathering of top researchers, clinicians, and people living with long COVID. As the CBC’s Adam Walsh reports, those on...
www.cbc.ca
October 30, 2025 at 1:08 AM
“We need to bring awareness. I think that’s the biggest thing,” says Dr. Catherine Clark.
Educating others about Long Covid involves more than sharing information. For the message to be effective and bring about real change, it’s important to create a personal connection.
Share your stories 🌈🌈
Educating others about Long Covid involves more than sharing information. For the message to be effective and bring about real change, it’s important to create a personal connection.
Share your stories 🌈🌈
I’ve been waiting for Long Covid to be a checkbox on medical forms.
This is a start 🙌🙌🙌🙌
This is a start 🙌🙌🙌🙌
Dermatologist check in new patient forms today had a checkbox for longcovid only they called it “illness after 2019 n-COVID” or something very similar. It was obv what they meant. Found it interesting.
October 29, 2025 at 10:54 PM
I’ve been waiting for Long Covid to be a checkbox on medical forms.
This is a start 🙌🙌🙌🙌
This is a start 🙌🙌🙌🙌