Author | Lightnews

Sue Poncin @sueponcin.com · 6h

Thank you for doing your part to advance science and help all of us who suffer! I know it’s not easy to use the energy you have for trial appointments and tests. Wishing you and the study team well 💜

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Sue Poncin @sueponcin.com · 6h

Wow! Not surprised but I’m excited scientists investigated.

Sue Poncin @sueponcin.com · 7h

Congrats! Thank you for helping others know they are not alone. Looking forward to reading and sharing 💜

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Sue Poncin @sueponcin.com · 9h

LFG! 🌈🌈🌈🌈

The Sick Times @thesicktimes.org · 15h

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

A graphic featuring a photo of the Long COVID Treatment Trial testing kit: a package, colored teal on the inside, that includes a Garmin device, smart scale, and other supplies for the trial, along with instructions. The kit is shown three times, with a background that is light orange with white spots. The text reads, “The Sick Times. We need more at-home clinical trials for Long COVID. Here’s how we designed the largest one yet. Written by Julia Moore Vogel.”

"The healthcare system is designed to optimize profits, while we put our health at risk to receive even basic care. Clinical trials often reflect that system." - Julia Moore Vogel

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Sue Poncin @sueponcin.com · 9h

It’s the worst! Taking away from every possible thing that can bring joy.

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Sue Poncin @sueponcin.com · 9h

I’m going to steal “my legs have the flu”! A perfect description for how they feel.

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Sue Poncin @sueponcin.com · 9h

Which study are you in if you don’t mind me asking?

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Sue Poncin @sueponcin.com · 10h

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.

Data Report @datareport.bsky.social · 16h

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

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

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Sue Poncin @sueponcin.com · 10h

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.”

Data Report @datareport.bsky.social · 16h

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

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

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Sue Poncin @sueponcin.com · 10h

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

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Sue Poncin @sueponcin.com · 19h

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

Cover of The River’s Daughter by Bridget Crocker on the shelf at Milkweed Editions bookstore in Minneapolis.

A page in the book at the start of Chapter 11 where the author describes driving through central California on highway 178 on her way to be a rafting guide on the Kern river.

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Sue Poncin @sueponcin.com · 1d

“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.”

Denis - The COVID Info Guy @thecovidinfoguy.bsky.social · 1d

"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

Screenshot of an article from The Hamilton Spectator titled “Opinion | Minimizing COVID-19 is maximizing social harm.” The subheading reads, “Governments, in the interest of maintaining the status quo, seem to be misleading people and hoping for the best.” Published October 30, 2025. Below the headline is a photo showing people walking indoors — some wearing face masks, others unmasked — highlighting differing attitudes toward COVID-19 precautions.

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Sue Poncin @sueponcin.com · 3d

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 · 3d

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 · 4d

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 · 4d

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 · 4d

🧠 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 · 5d

“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 · 5d

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 · 5d

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

This is a start 🙌🙌🙌🙌

Kristin Houlihan, Writer @kristinwrites.bsky.social · 5d

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 · 5d

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 · 5d

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 · 5d

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 · 6d

“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 · 6d

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 · 6d

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 · 7d

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 · 7d

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 · 7d

“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 · 7d

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 · 7d

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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