1/🧵 A personal story of misjudgment as a physician.
Years ago, when I was a young doctor, I had a patient in the ICU on a ventilator who was doing so poorly, day after day, that I was certain he was going to die.
I confidently told the family he was going to die.
2/ The family members all gathered and were extremely distraught. They listened and trusted me.
3/ For many years to come, I received Christmas cards from this man.
It was extremely humbling.
Until I learned, this happened many other times in my life as an ICU doctor.
Sometimes I was off by just 2 weeks, sometimes 2 months, and other times by 2 years.
4/ I no longer predict how long someone will live.
Instead, when the family or a patient inevitably asks me this question, I “flip it.”
I admit that I honestly don’t know how long s/he will live.
Yet for those severely ill, I prepare them for how quickly death ‘may’ occur.
5/ This “flipping it” both maintains #hope & also helps people become realistic about how sick someone is so that they can mentally prepare and communicate appropriately with one another.
6/ I’m amazed by the number of things during the dying process that often happen in someone’s life to bring long-awaited healing (even without cure) for patients & everyone in their love circle.
To me it’s evidence that we are all greater than the sum of our parts.
7/ During people’s dying process – be it hours, days, months, or years – people deserve to have dignity respected & the entire process honored.
In accordance with many patients’ wishes, we regularly remove ventilators & other life support as part of the natural process of dying.
8/fin
My “Christmas Card” patient never once chided me for predicting (wrongly) his death.
Instead, we became very close. He helped me shed bad prognostication habits & more than a smidge of pride.
Our patients lead us.
I’d love to hear any lessons you have on this topic.
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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.