WesElyMD Profile picture
Aug 3, 2021 9 tweets 7 min read Read on X
1/🧵🎥 Former ICU Nurse with #LongCOVID👇 describes disabling #POTS (Postural Orthostatic Tachycardia Syndrome)
 
“I'm an Ivy League grad & former ICU nurse who got COVID a year ago (before #vaccination). I had no medical problems & now suffering Long COVID so badly…”
2/ …”that I can’t work in the ICU and basically have a desk job. POTS & Long COVID gave me a racing heart, dizzy head & inability to function adequately in life. It’s horrible. My brain fog makes it impossible to execute tasks to care for patients. Life as I knew it seems over.”
3/ …she said, “It irks me to hear people downplay this disease when I'm suffering this badly a year later. I’ve been vaccinated myself now. We are surging again. People are scared. Let’s talk this out & find a way out of the €%£! pandemic.”
4/ Heart involvement in #COVID19
 
This study in 43 ICU pts showed 50% had heart injury on admission & 70% by 3 dys. This included disease of the pericardium sack, electrical rhythm, plus the heart muscle itself. What does all this mean? @CHESTCritCare

bit.ly/3bu87R3
5/ Studies show the heart muscle, electrical system & the area around our heart (sack + fluid) can all be involved early in #COVID19. The CHEST study👆found there was more right-sided 💔problems especially when there is lung destruction, which happens a ton in #COVID
6/ To understand POTS in #LongCOVID, we have to 🧐 about a crossover disease involving BOTH heart & nervous system. This paper proposes 4 mechanisms: hypovolemia, destroyed peripheral neurons, brainstem problems, and immune problems. Fascinating & Scary.

bit.ly/37ibTuh
7/ The type of 💔 failure this nurse has leaves the pumping fxn of the heart preserved, but the relaxation gets damaged. It leads to shortness of breath & “tachycardia” that disables her. This can help explain many pts #LongCOVID symptoms. She’s on two powerful meds to help.
8/ 🎥 Our nurse has ongoing ankle swelling, heart racing, anxiety, and her life is totally topsy-turvy because of #LongCOVID heart failure. It’s been ~1 YEAR & this has likely changed her life forever. She has chosen to share her story to help others. Listen to Jennifer!👇
9/fin
Please do not neglect your own health after #COVID19 or discount another person’s #LongCOVID symptoms just because they “look normal” on the outside. Remember what the boy said to the mole & the horse to the boy…@CharlieMackesy
@Dr2NisreenAlwan

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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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