1/🧵 “Live every day like you have a terminal illness.”
The most important thing I learned @ISICEM, after 3 ✈️ & 4,400 miles to Belgium for this huge meeting of #COVID ICU doctors, had nothing to do w science.
The iconic @JRandallCurtis1 taught me…(pic & story shared w perm)
2/ My friend of 25 years opened his lecture on End-of-Life with, “I have a disclosure of sorts. I’ve been diagnosed with ALS (Amyotrophic Lateral Sclerosis, aka Lou Gehrig’s disease), so this will probably be the last time I lecture at this meeting.”
Then he asked us to PAUSE.
3/ Talk about a Frame Shift.
I already knew, but it all hit me like a thunderbolt⚡️. The Father of ICU EOL #PalliativeCare research & former president of @atscommunity had just told us all that he has a fatal illness, and we could hear it in his speech pattern.
4/ Randy bravely stood willing, as always, to teach. And teach he did! Slowly & at times clearly struggling, he shared a lifetime of research knowledge to help the rest of us learn how to improve the lives of dying #COVID & non-COVID patients.
Assure them, “I won’t abandon you.”
5/ “Friends, we are bad at communicating to patients & families. And when we bring other teams into family meetings to help busy doctors, but leave out the ICU doctor herself, it’s often worse and leads to more PTSD.”
7/ Randy brought #science to “warm & fuzzy” compassionate care. He & @ElieAzoulay5 teamed up to study VALUE in a clinical trial of 126 patients & families in 22 French ICUs. They lessened the burden of human bereavement by ⬇️ anxiety, depression & #PTSD.
8/ Watching Randy lecture, I knew I was witnessing medical history. I choked up as I told the audience about when in 1997 Randy & Dr. Gordon Rubenfeld told me their dream to help others through academics. They brought humanism into the previously cold ICU & ⬇️ doc/nurse burnout.
9/ YOUR LIFE IS BETTER too because #COVID care wouldn’t be what it is without @JRandallCurtis1. He helped taught us a type of spiritual poverty and humility in ICU medicine. To eschew ego and knowledge. The art of touch and listening.
Thank you, Randy!
10/fin
And then Dr. Curtis delivered the emotional slapshot to what may be the most important lecture I’ve ever heard.
These pearls:
❇️ Choose your mentors & colleagues carefully
❇️ Take “sabbaticals”
❇️ Prioritize family!
❇️ Live every day like you have a terminal illness
Friends - please retweet this 🧵 as a living tribute to @JRandallCurtis1 for allowing his story to be shared (I asked him today and without hesitation he said yes). Help spread Randy’s message of ❤️
Dear Randy @JRandallCurtis1 - on behalf of the >half million people who’ve now read this 🧵 about your ONGOING beautiful life, thank you for telling us👇that your ❤️ is full! I think WE all needed to hear this. Thx for the time yesterday walking with me in the park! #brothers
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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.