Sue Poncin

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.

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

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

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.

“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 🌈🌈

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

This is a start 🙌🙌🙌🙌

Broadcast wide and far:
Long Covid declaration

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

longcovidriseup.eu/lc-declarati...

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.

“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.

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.

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/...

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

“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.”

“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!

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.

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...

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.

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

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.

“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!

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

YouTube video by SPORTSNET Jonathan Toews' Unbelievable Journey Back To The NHL

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?...

“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.“

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

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

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

The more you know……

“It’s designed for parents who are just starting to piece things together and need a clear, calm path forward. You’ll find language to describe symptoms, practical next steps, and links to trusted medical and educational resources.”

A screen shot of the cover of the step by step guide for families.

Start Here: If you think your child may have Long Covid
From @longcovidfam.bsky.social

This is where to begin. Our Start Here guide walks you through what to look for, what questions to ask, and how to talk with your child’s clinician or school.

hubs.ly/Q03P6mLp0

Thank you for writing this article! Well done!!!
My mission is to share our Long Covid stories to help others understand what it is like to be ripped out of your life by an illness, increase awareness to drive funding and research, and to help others who suffer know they are not alone.

Which one?

According to a headline
“Long COVID Brain Fog
Isn’t ‘All in Your Head.’
Scientists Now Know the Cause,”
and while it’s important to note
that brain fog isn’t
all in your head,
it’s also important to remember
that Covid’s lasting harms
are not limited to your head.