1/🧵🎥 UBUNTU is an answer to the #COVID question not enough of us are asking:
Who is my neighbor?
Our response to this question will dictate our #PublicHealth decisions.
What is ubuntu? A type of humanism needed #now more than ever. Listen to Nelson Mandela & Desmond Tutu!👏
2/🎥👇 Nelson Mandela on Ubuntu: “A traveler through a country would stop at a village and he didn't have to ask for food or for water. Once he stops, the people give him food and attend him. That is one aspect of Ubuntu, but it will have various aspects.”
3/ Embracing #Ubuntu means it’s not about you, it’s not about me, it’s about us working together as one! Ubuntu is belief in a universal bond of sharing that connects all humanity & transcends barriers, ideologies, cultural diversity and more.
4/ Philosophically, ubuntu is the belief in a universal bond of sharing that connects all of us together as one. If we think like that, then we will listen to one another better. Bishop Tutu has something to say about ubuntu…
5/ Bishop Desmond Tutu: “You know when ubuntu is there, and it is obvious when it is absent. It has to do with what it means to be truly human, to know that you are bound up with others in the bundle of life.”
6/ In #COVID, Ubuntu can heal. Nelson Mandela: “Ubuntu doesn’t mean people should not address themselves. But are you going to [address yourself] in a way that enables the community around you to improve?”
What’s our collective approach to this Swiss Cheese model & #vaccination?
7/ Ubuntu even makes its appearance in Kolk’s masterpiece, The Body Keeps the Score. He writes: “Trauma breeds further #trauma; hurt people hurt other people.”
8/ Kolk say, “My most profound experience with healing from collective trauma was witnessing the work of the South African Truth and Reconciliation Commission, based on the central guiding principle of Ubuntu, a Xhosa word that denotes sharing what you have…”
9/ Kolk teaches: “Ubuntu recognizes that true healing is impossible without recognition of our common humanity & our common destiny. We are social creatures—our brains are wired to foster working & playing together.”
10/ Only now am I realizing that #Ubuntu was the spirit behind my writing #EveryDeepDrawnBreath all along. We have a collective role in each other’s healing. It’s ongoing, too. I can correct a missed opportunity to help you yesterday by choosing more wisely today!
11/fin
The trauma we’re experiencing in #COVID19 “devastates the social-engagement system & interferes with cooperation, nurturing, & the ability to function as a productive member of the clan.” We can get this back. It starts with nurturing #UBUNTU!
Won’t you join me? Thoughts?
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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.