They met at a drive-in burger joint in Memphis. Elvis blaring.
He peered into a car of 6 teenage girls & saw her.
💭 “That’s the most beautiful girl I’ve ever seen.”
They’ve been madly in love ever since.
(Pics & story w perm)
2/ Pain feeds pain, but love & gratefulness starve pain…
Mr. M came into the ICU w sepsis & shortness of breath.
We placed him on life support to help reduce his suffering. The disease proved too much.
Fortunately, sadness & despair took a back seat to what happened next…
3/ In 1961, the night they met, the teens went to a bowling alley.
She didn’t have permission, so she walked home.
He found the girls & asked, where’s your friend who was sitting in the back seat?
He couldn’t get his mind off her smile…
4/ So he went to her house & knocked on the door.
“Doctor, he told me, ‘you’re the most special girl I’ve ever met.’”
A year later they were married.
He became an engineer & they had 3 children.
A life full of hard work & blessings, until COVID. Isolation took its toll.
5/ “It is not your love that sustains the marriage, but from now on, the marriage that sustains your love." Bonhoeffer
As he got sick, she arranged an ambulance & has been at his bedside ever since.
Mrs. M whispered to me, “Our hearts are sewn together, Doctor.”
6/ Mrs. M called the gas company to pay their bill (old school 😌)…
A total stranger over the phone listened to their story and got 30 office mates together to sign a card & pack them a bag of mints that read, “You 2 were MINT to be together in forever & ever.”
She cried.
7/ As it became clear he wasn’t improving & didn’t want more life support, we removed the ventilator and adjusted his meds to keep him comfortable.
I asked, “What matters most to you, Sir? I’d like to grant you 3 wishes.”
8/ “Doctor, what matters most to me is (1) to be with my family and (2) have all of us drink a beer together (3) sharing stories. Those are my golden ticket wishes.”
So our ICU team set out to make it happen…like we did recently for Mrs F👇
9/ Through the night, she sat at his side, never once dozing off.
I was mesmerized as stories spilled out about their marriage, parenting, and hardships that forged their bond.
He talked as well, until he couldn’t any more.
She kept whispering to him…
10/ Always tell others what you need them to know.
Every moment counts.
These two people modeled for me what it means truly to be present for another.
She explained, “I gained weight in age, but he always said I was the most beautiful person he’d ever seen…”
11/ “Doctor, I’m not a special or fancy person. I’m simple, But to him, I’m everything. And to me, that’s all that matters.”
They made a promise, a covenant, and they kept it.
What makes such a marriage?
12/ “All the things that make marriage a success are in their nature undramatic things, the silent growth of an instinctive confidence, the common wounds and victories, the accumulation of customs and courtesies, the rich maturing of old jokes and retold stories.” GKC
13/ I see in them something beyond riches.
Their love far exceeds anything one can earn on paper.
Over a lifetime, they have trained for & won an Olympic medal of love.
It was our privilege to serve…to provide his 3 wishes.
🔸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.