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Aug 25, 2022 29 tweets 19 min read Read on X
1/🧵 The Haunting Brain Science of Long COVID 🧠

@washingtonpost Aug 25

📍Brain shrinking
📍Corona ghosts
📍Autoimmunity
📍Clinical clusters

“The good news is that in some pts #LongCovid #BrainFog may not be permanent.”

Link👇 but paywall so see 🧵

wapo.st/3wvPBlF
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2/ Mild Covid is biologically dangerous long after initial viral infection.

81 mild COVID pts:

Study revealed:
✔️Astrocytes (🧠 support cells for neurons) get infected
✔️Neurotransmitters are altered
✔️Neurons die indirectly
✔️Then we lose brain power

bit.ly/3pcqbFV
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3/ Epidemiology💥

Long COVID is tightening its grip on society.
 
We’re still losing >600 people a day to death from COVID in US alone

Over 100,000 new infections per day (Johns Hopkins data).
 
This is an epic global 🌍#PublicHealth catastrophe.

wb.md/3SKjGrh
4/ New @TheLancet study says 12.5% of those infected get LongCOVID:


Yet they didn’t ask about brainfog or mental health, which 1 in 3 pts have.

CDC study of 63M says 20% have LC:


So…

~15% x 600M = 90 MILLION

SO what is LCovid? bit.ly/3Aiyi9W
bit.ly/3AmPHhM

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5/ Fascinating new study from @VirusesImmunity team on LongCOVID…

🔸Other dormant viruses like VZV and EBV are reactivated
🔸Also, low cortisol is a Biomarker of severity
🔸It’s an example of how our body is taken advantage of by our own immune system

bit.ly/3QUgebZ
6/ CoronaVirus Ghosts: 👻

Antibody patterns over time indicate prolonged antigenic stimulation long after COVID infection.

We find virus in the GI system of some patients mos later.

One theory about #LongCOVID is that COVID has figured out how to…

go.nature.com/3w1jnhZ
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7/…#COVID virus rents space in our gut mucosa wreaking havoc on some people’s immune system.

📌N=113. Ongoing viral “ghosts” (& not friendly Casper)
📌Fecal shedding in 50% initially & still present in 12.5% pts at 4 mos
📌GI symptoms 1 yr later
📌Ugh
 
bit.ly/3BYVThj

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8/ This study of 46 patients with Inflammatory Bowel Disease (IBD) >200 dys after COVID showed viral RNA in a whopping 70% of them 7 months later.

Most patients w ongoing COVID antigen persistence got #LongCOVID.

That’s not proof of cause & effect…yet.

bit.ly/3vT7dYz

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9/ We learned in @Nature that patterns of B cell response (antibody production) continued to evolve 6 mos after initial infection.

This supports that ongoing Ag stimulation of our immune systems by COVID ghosts in GI tract is a source of Long COVID.

go.nature.com/3bQgHNo

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10/ Ongoing inflammation is also supported by this study of N=2,320 pts in which systemic high levels of IL-6 & LC symptoms support ongoing tissue damage that translated into disability & low quality of life 1 year later.
 
bit.ly/3LUsHu9



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11/ Three different profiles of #LongCOVID were found in N=1,500 patients:

🧨 brain predominant
🧨 heart/lung predominant
🧨 multi-system (including joints & GI).

Which profile do you or your loved ones suffer?
 
bit.ly/3QjM5mq



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12/ It is estimated by large datasets using ICD-10 codes that ~75% of #longCOVID patients were never hospitalized.

📍third <50 y/o (4% kids <12)
📍third between 51-66 y/o
📍third >65 y/o
 
bit.ly/3djfkqN

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13/ BRAIN FOG: Early autopsy studies of COVID pts showed lack of virus in neurons & made us think the brain wasn’t involved.

We know lots more now...

UK Biobank MRI study N=401 pts(most mild COVID) found ⬇️ brain SIZE vs 384 controls & slower brains 😩

go.nature.com/3ILTN4Z


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14/ Other neuroimaging, PET & cognitive testing data support abnormalities in the hippocampus & frontal cortex.

PET studies showing metabolic slowing help explain profound anxiety, loss of memory & neurocognitive deficits in long COVID pts.
 
bit.ly/3axWlaN

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15/ The virus infects not only endothelial cells but also astrocytes, both of which indirectly affect longevity and overall health of our neurons.

Glial cells are the glue that holds the brain together and provide the environment for neurons to thrive.
 
bit.ly/3SIWiKC


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16/👇Frere showed glial cells are activated by COVID & sustain inflammation, which in turn, sadly sets into motion a pathway toward overall brain atrophy (shrinking), long-term cognitive disability & mental health disorders seen in your friends w LC.
 
bit.ly/3zB7gLk


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17/ We have solid data across mammals (e.g. humans and mice) that COVID infection causes increases of neurotoxins and neuronal cell death similar to that seen in the brains of patients with cancer after receiving chemotherapy.
 
bit.ly/3JM0fdE

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18/ Neuropsychological testing we do as part of our @CIBScenter’s NIH studies indicates many of our long COVID patients have deficits equivalent to acquired dementia.

Clinical trials are being designed, including therapies to prevent/heal dementia.
 
go.nature.com/3Qx6XXe
19/ Science makes it so clear that #Covid turns on inflammation & alters our nervous system even when the virus seems long gone.

Listen & validate your friends & patients.

It helps them simply to know they are heard.

TY @VirusesImmunity👇
 
go.nature.com/3zQqVFB


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20/ LC pts describe over 200 symptoms‼️

Yet we have no cures…yet

At times, I must have seemed upset & perhaps sent the message to patients they’re a burden.

If I have, I am sorry.

It is in no small part because I'm grappling for answers, too.

bit.ly/3JLGNO5
21/ I remind myself that patients are not difficult. It’s the situation that is difficult.
 
New data in 1.28M COVID pts found mood & anxiety disorders improved BUT Acquired #BrainFog (dementia), psychosis & seizures persist at 2 YEARS.

 bit.ly/3PBsOvw
22/ Too many people are losing #hope.

A study of 150,000 COVID survivors, both hospitalized & not, showed they had 10-15 times ⬆️ risk of considering suicide at 1 year versus 11M control patients.

Our daily zoom support groups are part of recovery ❤️‍🩹
 
bit.ly/3HnHZpB

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23/ In 20 years of studying long-term ICU outcomes, we’ve learned that acquired dementia is often partially correctable.
 
#PICS patients can benefit from brain exercises even years after ICU care.

There will be overlap w #LongCOVID & we must study this.

bit.ly/3vCMTtc
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24/ Patients with cancer who suffer #ChemoBrain may benefit from cognitive rehabilitation.

Some use sudoku, wordle & online games to help. The brain wants exercise & can often rebuild and sharpen.

We are conducting more clinical trials.

H/T @tmprowell

bit.ly/3KimRCG
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25/fin
#LongCOVID patients, please don’t lose hope. Your brain is packed w powers of neuroplasticity.
 
Caregivers serving patients during difficult times, harness empathy & compassion to aid patients’ recovery.
 
Neuroscience is real & patients must be heard to start healing ❤️‍🩹 Image
26/ Here is the link w easy to tap image from @washingtonpost and since it’s behind the paywall the next tweet is a screenshot of the piece…hyperlinks are fleshed out in the 🧵…

wapo.st/3wvPBlF
27/fin
Haunting Brain Science of Long COVID -

It’s astonishing what we are learning.

Here you go for full text screen shots of the entire OpEd 💥
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Long COVID Brain science data

Gifted link

(no paywall) 😘wapo.st/3Tf0WQR

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More from @WesElyMD

Aug 1
1/🧵Long-COVID Defined

🔸Let’s Unpack @NEJM
🔸Hear from patients
🔸We call LC a disease state
🔸It’s a clinical definition
🔸Adding Inclusion/Exclusion Criteria to our @theNASEM definition fosters great research definitions
🔸 I admit my early mistake…

bit.ly/3Ys30u0
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2/ NASEM 2024 Long Covid Definition:

“Long Covid is an IACC occurring after SARS-CoV-2 infection & present >=3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.”

Read caveats in text box… Image
3/ Patients describing Long COVID – read text box

“My long Covid life remains terrifying. Last weekend I washed my car, dried it, put it back in the garage. Then I got violently sick and could hardly get up to get food. I was unable to read or even call my mom. I’m a shell of myself. But my physical issues aren’t half as bad as my brain problems. It’s hard to describe. You can say brain fog, but that doesn’t come close to doing it justice.”
“At work my brain is just begging for rest. I struggle with finding words and completing tasks in a timely manner. … I’ll be in a meeting and know exactly what I want to say before I say it. …I’ll get to a word, and I just cannot think of the word. I’ll just be like, ‘Give me a moment,’ and I’ll go through my brain cycling through words. This week the word was “consistent.” I couldn’t think of the word consistent. I kept thinking it was coincident or concentric or constant. I used to build prototypes multiple days a week, and now if I do anything in the lab, I’m pretty much wiped out for a week. …I mean, I’ve had to dig real deep. How much longer will I feel like this? I’m scared.”Image
Read 14 tweets
Oct 17, 2023
1/🧵 Long COVID Disease State
 
COVID infects us & Interferon causes 3 dastardly plots:
📌 We absorb ⬇️ tryptophan & convert ⬇️ Serotonin
📌 Platelet pathology ⬇️ stores of Serotonin
📌 Vagal nerve signals peripherally ⬆️ impairs brain function & memory

bit.ly/3M5F9ZV
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2/ Tryptophan is an essential amino acid - we don’t make it.

So if we’re “programmed” to absorb ⬇️ from our diet, we sleep poorly, think worse, and all sorts of other bodily functions go awry.

Will SSRI & SNRI meds help, or anti-virals, or immuno-modulators?

Trials will tell. Image
3/fin
This study by @maayanLevy_lab is a marvel of dozens of avenues of science that all point to a greater understanding of the realities of #LongCOVID as a chronic disease state.

Through work like this, we legitimize not only LC, but also #MECFS #LongLyme etc & take one step closer to finding medical solutions for past & future post-infectious states + syndromes like #PICS

TY @cooney_liz for this @statnews piece!

Read 4 tweets
Oct 10, 2023
1/🧵Catatonia - shocking & hopeful insights into a mysterious neurological disorder 💥

Did Oliver Sacks’s Catatonic “Awakening” Patients have a treatable Autoimmune Disease?
 
Here I unpack story & science from a stunningly well-done @WashingtonPost article Image
2/ Amazing Discoveries of Autoimmune Disease causing Decades of Catatonia, Schizophrenia
 
Autoantibodies and treatment with immunosuppressive medications are waking some patients up with crazy cool results. Here’s the article and my highlighted excerpts:
 
3/ “The first conclusive evidence was in her bloodwork: It showed that her immune system was producing copious amounts and types of antibodies that were attacking her body. Brain scans showed evidence that these antibodies were damaging her brain’s temporal lobes, brain areas that are implicated in schizophrenia and psychosis.”
Read 25 tweets
Sep 27, 2023
1/🧵 Post-Infectious Syndromes

…a Doctor’s admission
 
📌 I didn’t think #MECFS was real till #LongCOVID opened my eyes
📌 It’s “mysterious” & we weren’t taught it in med school
📌 Yet 1,000s are suffering a disease traditional medicine doesn’t understand
 📌 Let’s find answers Image
2/ Long COVID is estimated at 6% of US Population… @CDCgov
 
“Prevalence of #longCOVID among U.S. adults ≥18 ⬇️ from 7.5% during June 2022 to 6.0% during June 2023.”

More than 1 in 4 w LC have activity limitations, ie, it’s a LIFE altering disability.
 
bit.ly/3sZH8s2
3/ What is #LongCOVID?

Well, it’s not new…update👇
 
Acute Covid triggers #MECFS as do other infectious agents.
 
“Triggers” means temporal association not “cause” in a mechanistic sense.”

Think also #LongLyme #Fibromyalgia & more

bit.ly/3RyMJ34
Read 8 tweets
Sep 6, 2023
1/🧵 Long COVID - new @TheLancet data

📌A picture is emerging
📌It’s not pretty
📌Most pts w months-long symptoms aren’t recovered @ 2-yrs
📌The cluster including neurocognitive & cardiovasc symptoms is ominous
📌These data fuel trial design

Thoughts…

bit.ly/3sHrwt9

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2/ This Lancet investigation of just over 500 patients is not particularly large but is well done. The methodology used LC patients from Catalonia Spain from 3/2020 to 2/2022.

They included people who were unable to obtain Covid test but who had an acute onset of symptoms extremely consistent with the syndrome and who developed the same long-term definition of long Covid.

Some may argue about this point but the longCovid community has taught me how important these patients are to include in such research.
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3/ Looking at this figure you can see the heat map emphasizing symptoms in clusters B & C that the authors are most confident indicate persistence.

💥 fatigue, headache, neurocognitive, dyspnea, arthralgia, chest pain and tachycardia 💥 Image
Read 8 tweets
Aug 24, 2023
1/🧵This weeks 2 important studies on Long COVID
 
📌Include ~340k COVID patients vs ~7M controls out to 2 yrs
 📌Organ dysfunction persists in 33%
 📌Levels of disability from #LongCOVID exceed those of cancer & heart disease‼️
 
Links at end of this thread
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2/ Remember that these data complement the 8 or so other studies showing similar findings, and EXTEND the information using VERY large control groups w censoring if those controls got COVID.
3/ CAVEATS:
First, these are US Military Veterans

✏️Thus, older and more white than the average #LongCOVID person
✏️They also do NOT help us with Delta and Omicron variant COVID
✏️These findings are robust and statistically sound and published by very astute and qualified investigators
✏️But they must be extended scientifically in cohorts that include a high number of younger women, people of color and lower SEC as well as newer COVID variants.
Read 6 tweets

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