Author | Lightnews

Sue Poncin @sueponcin.com · 23h

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.

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Sue Poncin @sueponcin.com · 1d

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

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Reposted by Sue Poncin

Julia MV @julialmv.bsky.social · 2d

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...

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LoCITT-T - Long COVID Treatment Trial

longcovid.scripps.edu

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Sue Poncin @sueponcin.com · 1d

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.

Dr David Joffe MB BS(Hons), PhD, FRACP @davidjoffe64.bsky.social · 2d

🧠 Daily Feed of Brain Damage 🧠

www.nature.com/articles/s41...

Alterations of the amygdala in post-COVID olfactory dysfunction - Scientific Reports

Scientific Reports - Alterations of the amygdala in post-COVID olfactory dysfunction

www.nature.com

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Sue Poncin @sueponcin.com · 2d

“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 🌈🌈

Billy Hanlon @bhanlon15.bsky.social · 3d

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/...

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

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Sue Poncin @sueponcin.com · 2d

I’ve been waiting for Long Covid to be a checkbox on medical forms.

This is a start 🙌🙌🙌🙌

Kristin Houlihan, Writer @kristinwrites.bsky.social · 2d

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.

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Sue Poncin @sueponcin.com · 2d

Broadcast wide and far:
Long Covid declaration

Educate doctors, lawmakers, insurance companies, friends & family.

longcovidriseup.eu/lc-declarati...

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Sue Poncin @sueponcin.com · 2d

Stop the Stigma of Chronic Illness
by sharing your story.

I was greatly affected first 2 years of Long Covid & most was self-inflicted because I grew up with:
“They” should try harder
“They” are faking
“They” are milking the system.

“They” is me.

And no, I’m not.
Disability can happen to anyone.

Billy Hanlon @bhanlon15.bsky.social · 3d

Univ. of Alberta: 'Stigma slows long COVID recovery: study'

'Univ. of Alberta research study reports that long COVID patients..face persistent stigma also experience worsening symptoms..poor quality of life..increased risk of not being able to rejoin the workforce'

www.ualberta.ca/en/news/spot...

Stigma slows long COVID recovery: study

A U of A research team followed 99 patients diagnosed with long COVID and found that those who faced more stigma also had worse symptoms, poorer quality of life, and higher risk for depression and an ...

www.ualberta.ca

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Sue Poncin @sueponcin.com · 4d

“Findings link intestinal dysbiosis with variant-specific pathogenicity and highlight monitoring gut microbial changes”

Research stops the stigma, informs doctors ➡️ insurance covering gut microbiome tests, analysis & treatment.

Recovery is hard if you can’t eat or continuously shit your pants.

Dr David Joffe MB BS(Hons), PhD, FRACP @davidjoffe64.bsky.social · 4d

Cøvid related gut dysbiosis ...

Most definitely not your friend ☠️

www.nature.com/articles/s44...

Gut infection and dysbiosis are hallmarks of severe SARS-CoV-2 variants - npj Viruses

npj Viruses - Gut infection and dysbiosis are hallmarks of severe SARS-CoV-2 variants

www.nature.com

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Reposted by Sue Poncin

Dr Noor Bari @njbbari3.bsky.social · 4d

I just want to make this *abundantly clear*.

When “experts” say COVID-19 is mild for kids…

THEY HAD, AND HAVE NO IDEA WHAT TEN YEARS WORTH OF INFECTIONS WILL CAUSE.

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Sue Poncin @sueponcin.com · 4d

The IACC Case Competition is happening this Friday! Here is the link to sign up to and virtually. I cannot wait to hear what University of Michigan students came up with to help those who suffer from chronic illness and Long Covid.

www.bus.umich.edu/Conferences/...

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Sue Poncin @sueponcin.com · 4d

Sharing our Long Covid stories works!

It seems repetitive and tiresome but absolutely necessary. Realizing symptoms have real impacts on people and their families leads to empathy and understanding.

Spreading awareness eventually travels up.

My story: a.co/d/818zr0q

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Sue Poncin @sueponcin.com · 4d

“It’s almost like Kennedy joined the fight against chronic diseases, but is on the side of the diseases.”
@effies.bsky.social on point!

Together we can stop the pull yourself up by your bootstraps mentality of healing.

“The time for action is now.”

Effie Seiberg @effies.bsky.social · 5d

I wrote about how RFK Jr is making health worse for millions of Americans. He's slashed research and healthcare, and replaced them with "hAvE yOu TrIeD YoGa?"

Link & free link in thread. There are impeachment/removal proposals in both the House and Senate. Tell your electeds to boot this guy out!

Billy Hanlon @bhanlon15.bsky.social · 5d

San Francisco Chronicle: 'RFK Jr. has betrayed millions of Americans like me who suffer from chronic illness'

'Like millions of Americans, I live with a virally triggered chronic illness called myalgic encephalomyelitis...'

By Effie Seiberg

www.sfchronicle.com/opinion/open...

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Sue Poncin @sueponcin.com · 5d

“Long COVID is real. It’s wrecking lives. And it’s not going to stay hidden forever.
We deny. We look away. But eventually, the truth gets loud enough.
If you’re sick, hold on. The tide is turning. The world will eventually see what you’ve been enduring all along.”

Keep sharing your stories!

Christophe Veltsos @drinfosec.bsky.social · 8d

Latest🧵by @david.notesforfriends.com on Twitter:

"Long Covid & My Brother-in-Law
I was talking to my brother-in-law the other day about something completely unrelated. Long COVID came up. He’d heard the term, but didn’t really know what it meant..."

Full 🧵
threadreaderapp.com/thread/19816...

Long Covid & My Brother-in-Law

I was talking to my brother-in-law the other day about something completely unrelated. Long COVID came up. He’d heard the term, but didn’t really know what it meant. I gave him a short version of what I’ve been writing about. He blinked and said, “Gosh, I haven’t thought about COVID in a long time.”

There it is.

Most people outside these online bubbles haven’t. COVID’s not part of their daily landscape anymore. Not really. If they’re not sick, it’s gone. Or it might as well be.

We kept talking, and I could tell I’d hit the limit. His nervous system gave me the cue. You learn to stop right before the walls come up. That’s not manipulation. That’s emotional self-preservation.

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Sue Poncin @sueponcin.com · 8d

Insurance disregarding doctors expertise should concern us all. I understand the need for checks and balances but “playing chicken” with someone’s life has gone too far.

www.nbcnews.com/health/cance...

A liver transplant might save him — if he can get the drug he needs to stay alive long enough

A health insurance dispute is preventing a North Carolina man from getting a cancer drug his doctors say is necessary.

www.nbcnews.com

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Sue Poncin @sueponcin.com · 9d

This is one of my concerns with Long Covid treatments. It is a challenge when you are not well to weather the time it takes to adjust. When I started Amantadine, it took me 4 weeks to get back to where I started. When I started the clinical trial, it took 8 weeks. Both were worth the gains.

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Sue Poncin @sueponcin.com · 9d

Stigma keeps people quiet.
When you repeatedly hear….

Chronic illness means you’re weak
Chronic fatigue means you’re lazy
Dynamically disabled means you’re faking
Financial support means you’re milking the system

you hesitate to share your story.

Time to fight back & speak up.

a.co/d/cqEi5Rd

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Sue Poncin @sueponcin.com · 10d

I often wonder if I would have sought care earlier if I could have avoided Long Covid. But in 2021, there was no care unless you had blood clots or lung issues.

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Sue Poncin @sueponcin.com · 11d

“Pharmacists can “really try to get the message as much as possible to anybody that long COVID exists, that it can look different than in adults, and that you should talk to your pediatrician” to consider evaluation.”

Spreading awareness on all fronts!

Billy Hanlon @bhanlon15.bsky.social · 11d

Pharmacy Times: “In the Fragmented Landscape of Long COVID Care, Pharmacists Are Essential”

‘The expert panel included…Michael Peluso, MD..UCSF’

“Please do not let millions of us suffer with long COVID,” Cerda pleaded. “We do not want to lose hope…”

www.pharmacytimes.com/view/in-the-...

In the Fragmented Landscape of Long COVID Care, Pharmacists Are Essential | Pharmacy Times

While long COVID remains a complex disease, pharmacists are critical team members for patient symptom validation, managing polypharmacy, and navigating therapy access.

www.pharmacytimes.com

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Sue Poncin @sueponcin.com · 11d

The “transdiagnostic genetic vulnerability that reaches far beyond FM affecting core neurobiological systems:
central nervous system excitability, dopaminergic/serotonergic signaling, neuroimmune stress

It is found in ME/CFS, chronic pain conditions, IBS, PTSD, depression”

Identifiers ➡️treatment

Becky Ancira Robertson @ancirabecky.bsky.social · 11d

www.healthrising.org/blog/2025/10...

The Brain Disease: Huge Fibromyalgia Genetic Study Highlights the Brain and Offers New Treatment Possibilities - Health Rising

Just months after the publication of the first large ME/CFS GWAS study comes an enormous FM GWAS study. Notice how these two diseases seem to be marching hand in hand. Both are greatly underfunded, bo...

www.healthrising.org

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Sue Poncin @sueponcin.com · 12d

Change the cultural attitude of success over health.

“Perfectionist mentality has a negative side.
Inner critic was so strong.
Deal with whatever misery until you accomplish the goal.”

Jonathan Toews sounds others who’ve been sidelined by Long Covid.

youtu.be/eH3EgEsTwXA?...

Jonathan Toews' Unbelievable Journey Back To The NHL

YouTube video by SPORTSNET

youtu.be

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Sue Poncin @sueponcin.com · 12d

“And every single step, I do alone.
Because most of my colleagues still don’t believe in Long COVID or ME/CFS. Because there are
- no dedicated clinics. - no institutional support. - these patients are invisible to the system.

This is a collective problem. It requires a collective solution.“

Danilo Buonsenso @buonsenso.bsky.social · 13d

“We Can’t Do This Alone”: A Doctor’s Plea for Support in Caring for Long COVID and ME/CFS Patients

danilobuonsenso.substack.com/p/we-cant-do...

“We Can’t Do This Alone”: A Doctor’s Plea for Support in Caring for Long COVID and ME/CFS Patients

As a pediatrician and infectious disease specialist, my days are full.

danilobuonsenso.substack.com

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Sue Poncin @sueponcin.com · 12d

One infection = Disabled for 4.5 years

Speech therapist used Parkinson’s exercises
Physical therapist used stroke & Parkinson’s exercises
Clinical trial for rheumatoid arthritis med

I share my stories to spread awareness & let others know they are not alone.

a.co/d/fWcmMnk

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Sue Poncin @sueponcin.com · 12d

One infection = Disabled for 4.5 years

Speech therapist used Parkinson’s exercises
Physical therapist used stroke & Parkinson’s exercises
Clinical trial for rheumatoid arthritis med

I share my stories to spread awareness & let others know they are not alone.

a.co/d/fWcmMnk

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Sue Poncin @sueponcin.com · 12d

Thank you @longcovidcan-co.bsky.social for spreading awareness.

The more you know……

Long COVID Canada - Collaborative @longcovidcan-co.bsky.social · 13d

Long COVID isn’t rare. It’s a complex, chronic condition affecting millions worldwide, often for months or years after infection. Our latest article breaks down 7 key facts everyone should know about long COVID — from how common it is, to why prevention still matters.

whn.global/seven-things...

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