1/🧵🎥 Hard-Won #Wisdom from the wife of a #LongCovid patient >140 days into hospitalization.
You need to hear her 2 messages: 1. “What I can tell you is I’ve never given up #hope. To make it to tomorrow, we have to make it through today first.”
HUMILITY ❤️🩹 IS HER MEDICINE
2/ When things are acute, like in this video of her husband when he was 1st in the ICU, we tend to think our task list is all technological. I’m guilty of this. And I’ve caused ⬆️ suffering because of my tunnel vision.
3/🎥 Point #2 from my pts wife:
“He’s not gonna get better next week or next month. #COVID takes a LONG time. Our lives are forever changed. Expect setbacks & be your loved one’s advocate!”
NOW she & he are convinced of the importance of #Vaccination & masking. Learn from them!
4/ She’s graciously sharing some of his complication to give you an idea of a typical long-term COVID pt’s plight:
COVID pneumonia/ARDS,
Septic Shock
A Fib w RVR
Air leaks and Chest tubes
Bleeding
Clotting
Strokes
Blindness
Kidney failure
Deafness
Ongoing severe brain fog 🧠
5/ Everyone must be involved in #Recovery. Family members & loved ones too often get paralyzed by fear of this illness. 😩 You need to remember that even when he’s sedated in a coma, YOUR voice in his ear sends reassurance that he’s not abandoned. You offer hope.
6/ To all the #Doctors and #Nurses also hurting today, I want to remind you of our ICU History because it will anchor you & also serve as a “burnout prevention tool.” 30-40 years ago, we got great at ICU human physiology, but we lost site of the person in the bed.
7/ For EVERYONE who knows a sick #COVID19 patient, it is KEY to understand the full impact of critical illness. This disease CONSUMES a person. The entire person: mind, body, spirit. Without addressing all of these elements in healing, we miss the mark badly.
8/ #DeltaVariant has taken over. Our 4 MICU teams are now 90% COVID again - a TEN FOLD ⬆️ in <2mos. Years ago, when we practiced de-humanized #CriticalCare, we talked about "the septic shock in Room 8" or "the ARDS in Room 12." Let’s not drift back to “the COVID ECMO in room 7.”
9/ Twenty years ago, great at technology of life support, we failed to understand the context of our patient's illness in their life. We also failed to comprehend the potential negative effects of our new therapies. #COVID19 ICU care can become a depersonalization chamber.
9/ Twenty years ago, great at technology of life support, we failed to understand the context of our patient's illness in their life. We also failed to comprehend the potential negative effects of our new therapies. #COVID19 ICU care can become a depersonalization chamber.
10/ 🎥👇 During ICU, pts get new diseases they didn’t have before. Dementia, PTSD, depression, & muscle/nerve disease. This is #PICS or Post-Intensive Care Syndrome. It’s a HUGE part of #LongCOVID for survivors. This pt survived but has a long way to go:
11/ In the 2000s, we witnessed a move in #CriticalCare toward "cookbook" protocolized approach, that at 1st didn’t include deeper consideration of the humanistic side of medicine. Over the past two decades, we changed bedside dialogue with the #A2FBundle.
12/ Whether you are family or medical, today & every day please discuss the key elements of the #A2Bundle for all sick #COVID patients. This is a proven path to rehumanization in the ICU – hundreds of papers and >30k pts of data. Less death & More Recovery. What’s the A2F bundle?
13/ A is analgesia…control pain. B is BOTH stopping sedation & the vent to test readiness. C is Choice of drugs, avoiding benzos. D is Delirium management. E is Early mobility. F is Family! Do all that & we see less brain fog, more LIFE, and more HOPE!
14/fin
FIRST - get #Vaccinated
SECOND - There is an ENTIRE PERSON in that bed. Not just sick 🫁 or a COVID blood clot. The #Virus has taken so much. Let’s not let it take our humanity, too.
Fight back using the
Re-personalization Chamber. Whole person care!
• • •
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🔸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…
“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…
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.”
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.
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
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
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.”
📌 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
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.
📌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
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.
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.
📌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
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.
✏️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.