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Sep 13, 2022 22 tweets 16 min read Read on X
1/🧵 Land Mines in Long COVID - @BostonGlobe

Alex was training for 2024 Olympic Trials 🥇

That dream exploded 💣
 
New #LongCOVID science
📌Viral reservoirs at 1 year
📌Cardiac edema at 1 year
📌Dementia at 2 years
📌Hijacked mitochondria

ScreenShot👇
bit.ly/3U77u4r
2/ It’s one thing to concede that Long COVID exists as a societal problem for those w vulnerabilities like advanced age, pre-existing health conditions, or nearly dying in ICU.

What about nationally ranked D-1 long-distance runners⁉️

Paywall so read 🧵
bit.ly/3U77u4r
3/ Alex Schell is 21 & based his life decisions on making the 2024 Olympic trials.
 
“Not only can I not run due to #LongCOVID, I’ve also lost everything I hoped for. Who I envisioned myself to be is a past idea. It’s a monumental loss.” (story w perm)
 
What causes LongCOVID?
4/A cutting-edge explanation of what implants volatile “land mines” of long COVID throughout some patients’ bodies, after even mild COVID, is that people suffering long COVID end up w reservoirs of active SARS-CoV-2 virus in the lungs, brain & GI tract.
 
bit.ly/3Qw8Q5N
5/ This produces ongoing levels of viral spike protein in our blood sometimes as high at 1-year as we had during early infection.

This theory was corroborated in the majority of 37 patients w #LongCOVID & in NONE of 26 control patients.
 
WSJ: on.wsj.com/3DcJzKV
6/ Cardiac Edema:
A new investigation of a selected group of 346 patients with documented mild COVID found diffuse swelling of heart muscle on cardiac MRI at 3 & 12 months after infection vs 95 controls without COVID.
 
go.nature.com/3RRF2lm
7/ None of these people w heart muscle swelling at 3 & 12 months had any pre-existing cardiac conditions & none was even hospitalized for their COVID, yet 73% had shortness of breath, palpitations & chest pain at 3 months with 57% still had these symptoms at 1 year.
8/ In the thread below, I unpack the science of #BrainFog & #Dementia in Long COVID. Basically, our astrocytes & other glial cells are directly infected, which leads to indirect neuronal death & brain shrinking even after mild COVID.

Dastardly 😤
9/ Brain Science 🧠

…of Long COVID is summarized in this recent @WashingtonPost Op-Ed (screenshot below):
wapo.st/3Tf0WQR

Thank you, @EricTopol, for your highlighting:
10/ In case you missed it, here is @EricTopol’s recent 5 STAR review in @latimes that places new data in context for us.
 
He points out the urgent need for new trials & emphasizes that our best approach to avoid Long COVID is prevention.
 
Ask your doctor about the #BA5 #booster
11/ COVID hijacks mitochondria in both heart muscle & brain cells, which may provide a link to the neck-up & neck-down disease plaguing Long COVID patients.

#Mitochondria allow us to use food & oxygen to harness energy for everything we do in life.
 
bit.ly/3x70vP1
12/ Mitochondria inside Neurons & Astrocytes in the brain are hijacked.
 
This study used biomarkers from an array of patients to show mitochondrial health was sacrificed in long COVID patients, helping explain widespread neuropsychological disability.
 
bit.ly/3D8PCjK
13/ COVID is a form of viral sepsis, and we know that there is an association between recovery from sepsis & mitochondrial dysfunction.
 
@TheLancet - bit.ly/3QEe1AY
14/ People often compare Long COVID to #MECFS, which some posit is often driven by diseased mitochondria.

Unfortunately, we’re still early in this line of research w much to learn before specific therapies are available.
 
bit.ly/3ezusB2
15/ HOPE = Hang On Pain Ends
 
I see 3 paths forward:
☑️ Research
☑️ Prevention
☑️ Empathy & Validation

1st, we must have better trials. The NIH & other groups - eg @microbeminded2’s LCRI @research_long - offer great hope for answers on the near horizon.
16/ Second, prevention of infection.

Whether by masking or vaxx or both.
 
Remember that COVID-related deaths in 2022 are 5-times lower in vaccinated than in unvaccinated people.
 
Updated graphs available here: bit.ly/3BmgcV5
17/ In addition, vaccination lowers the risk of Long COVID by as much as 75% to 85%, and the new bivalent B5 booster vaccine is now available.

Read 🧵 w data: 👇@JAMA_current
18/ Third, we can work together as a community to be more empathetic, validate & advocate for those suffering #LongCOVID.

Too many are still silenced & made to feel their invisible injuries are fabricated.

As @edyong209 teaches, they are very real -

bit.ly/3ByYI8h
19/ When interviewing patients for #EDDB, they told me they wished their hand was cut off:

“At least then, Doc, people could see HOW I’m disabled.” Audun Huslid
 
Doesn’t that tear you up?

We must help more, better, faster

Real #People #Real Disease

👇 bit.ly/3tBDVLw
20/🎥👇The disability of Long COVID has kept many people at home for 2 years!
 
The reality of this #publichealth disaster was outlined well by CNN’s @DrSanjayGupta when he recently came to our @CIBSCenter:

See this powerful interview below.
21/ For this @BostonGlobe piece (tweet 1), Alex Schell told me:

“New research is happening. Maybe a medicine will come out, because I'm not ready to face the possibility that I don't get better. I mean, I just think back to the joys that I experienced through running…
22/fin
…I think of the joys I experienced before I had #LongCOVID. I think life can be that sweet again. There's no choice but to look up.” Alex Schell
 
Today I’m grateful for scientists @virusimmunity for advancing our understanding & hope -

bit.ly/3Buya8e

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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
Image
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
Image
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

Image
Image
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.
Image
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
Image
Image
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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