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WesElyMD Profile picture
@WesElyMD
May 30, 2023 • 19 tweets • 15 min read • Read on X
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2/ The heartbreak we see has scientists working to discover answers💔

Drs. @VirusesImmunity & @PutrinoLab explore hypotheses

📍viral persistence
📍vital reactivation
📍autoimmunity
📍inflammation

Testing antivirals, immune modulators, blood thinners. bit.ly/45E1F4v Image
3/ Data from 223 unvaxxed Mild/Mod COVID survivors

✔️ Show abnormal MRI 🧠 white matter inflammation at 9 mo vs matched controls
✔️Prolonged cellular changes occur & we don’t yet know the significance
✔️Clinical outcomes vary strikingly across studies

bit.ly/43f0vL2 ImageImage
4/ Brain inflammation in other types of #Dementia…

🔸Is often present YEARS before memory & executive dysfunction deficits appear
🔸Don’t be complacent or assume #LongCOVID is safe for peoples’ brains
🔸It’s precarious!
🔸 I covered this haunting brain science in 🧵👇
5/ Dr. @EricTopol tackles important new COVID-19 brain data beautifully

Topol warns us…⛔️
“Recall post-polio syndrome appears 15-30 YEARS after polio - a leading theory is viral persistence.

H/T fig @SutherlandPhD

Read his new substack here: bit.ly/3OMOzfi Image
6/ COVID survivors who died of non-covid causes (N=20)

📌 In autopsies, 60% had “enormous amounts of Spike Protein” in skull, meninges & brain - ✍🏻 author @erturklab
📌Not seen in controls
📌Similar findings in skull & brain of mice
📌 Vaxx not studied

bit.ly/3MZDINI ImageImage
7/ It is highly curious how these problems occurred in “neck-up” skull-meninges-brain structures 🤔

📎 Think again of long-term implications of this virus
📎 When >200 symptoms/signs occur in #LongCOVID after even mild infection
📎 Direct + indirect viral causes are at play Image
8/ We are sorting out risk factors for Long COVID

✔️ Eg: Obesity dampens the initial immune response to COVID
✔️ Pts w high BMI have less expression of IFN & TNF
✔️ “Leptin Resistance”👇
✔️ Could this allow ongoing viral replication & worse #LongCOVID?

bit.ly/43vvZfB ImageImage
9/ More direction come from >200k Medicare pts

🔹Using narrow and broad definitions of Long COVID
🔹Risk factors found = hypertension, chronic lung disease, obesity, diabetes & depression
🔹Time between initial COVID & LC was ~8 mos

bit.ly/3MCrvgt ImageImage
10/ How “Long” is Long COVID?

☑️ Swedish study found 85% of people w LC at 4 mos still had cognitive, muscle & fatigue problems at 2 yrs😔
☑️ Of those unable to work at 4 mo due to LC, ~50% unable to work at 2 yrs
☑️ Massive implications if plays out 🌎

bit.ly/3WG6Cp5 Image
11/ A new “Scorecard for PASC” @JAMA_current

✏️ This is meant #Research
✏️ Not validated for clinical diagnostic use
✏️ N=9,764 pts

Notable:
10% pts had PASC at 6 mo
⬆️ COVID Reinfections ⬆️LC risk!

bit.ly/45ztWsQ

TY @tthaweethai @LisaAMcCorkell @leorahorwitzmd ImageImage
12/ Each week ~25,000 people join >10M in US (>65M 🌎)

Suffering memory loss, heart problems, dizziness, extreme fatigue, sexual dysfunction+

Consistent data show ~10-12% of people develop LC after acute COVID

⬆️es w repeat infxns & unvaxxed

bit.ly/43azA2N Image
13/ How bad is Long COVID⁉️

⚠️ Study of N=536 Long COVID Wave 1 or 2 pts (87% never hospitalized)
⚠️ Found single & multiple organ impairment at 6 mo in 69% & 23% ⚠️ At 1-year it was basically the same w 59% & 27%

Crazy stuff not to be taken lightly

bit.ly/3qiOh5x ImageImage
14/ Long COVID is a public health disaster hiding in plain sight

People are losing hope Some of @POTUS’s $5B successor to Warp Speed, Project NextGen, should be earmarked to develop treatments for #longCOVID

bit.ly/3WEAxOu
15/ NIH-sponsored study of 825 pts in 44 centers
@JAMA_current

📍Found 56% of previously hospitalized COVID survivors struggled
📍To pay bills at 6 mos due to ongoing health problems
📍Even bathing & preparing meals was hard
📍Quality of Life deficits👇

bit.ly/3YGOM5k ImageImage
16/ Ongoing Brain problems are a plague in Pts with Long COVID

▪️Brain🔬reveals loss of supportive cells called glial cells & death of neurons
▪️Early dementia-like signs in too many #LongCOVID pts
▪️Even those who had mild symptoms during initial COVID

bit.ly/3ItiANv
17/ Society just doesn’t seem to care about Long COVID

🚫 The $1B earmarked for LC research has yielded precious little
🚫 Mental & bureaucratic wranglings have stalled study teams
🚫 LC communities are beyond frustrated by delays

H/T @rachelcohrs

bit.ly/3ql4N5a
18/ Science doesn’t validate injury

People do that, or they don’t

A recent @NEJM piece on “Facing the New COVID-19 Reality” did not even mention Long COVID 🤯

Government & policy makers operationalize actual relief…or they don’t 👎

bit.ly/3K1mIW4
19/ Vaccines - a few words please…

✔️ Importantly, there is an entity of vaccine-injury that looks very much like Long COVID
✔️ It’s real. It’s very rare compared to COVID-induced viral injury
✔️ And it’s heartbreaking
✔️ Still, the 20% in US who have a full series of shots… twitter.com/i/web/status/1…
🎥 20/fin - My Hopes

🚩 Pts living w LC are the experts – LISTEN to them
🚩 Let’s find answers through hard-core science
🚩 New AHRQ network👇 is a start to make it easier for pts to get treatment, disability services, support groups
H/T @pamelarbishop

bit.ly/429RbXr

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More from @WesElyMD

WesElyMD Profile picture
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
WesElyMD Profile picture
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
WesElyMD Profile picture
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
WesElyMD Profile picture
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
WesElyMD Profile picture
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
WesElyMD Profile picture
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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