WesElyMD Profile picture
Feb 28, 2022 16 tweets 11 min read Read on X
1/🧵 Are you happy?

My brother w #DownSyndrome is teaching me tons of life lessons.

In medicine & in life, I make big decisions based on guesstimates of other’s Quality of Life #QOL.

I often GET IT WRONG!
 
What do adults w #disability teach me about TRUTH?

Can I learn? Image
2/🎥 How do we “calculate” someone’s #QOL?
 
#Confession: I get it all wrong when I impose MY judgment onto THEIR life.
 
Greg, my 57 y/o brother-in-law with Down Syndrome, has a better QOL than I do.

Why?

Digest this…read on…
 
#DownSyndromeLove
3/ My working definition of QOL is “the ability to give & receive love.”

REREAD THAT👆

Greg understands the Law of the Gift: Treasures GROW when we give them away.

It’s the opposite of hoarding.

Yet, giving ourselves to others can be SCARY. Greg ponders deeply these emotions. Image
4/ As Greg’s new “dad,” I have watched a pattern in his life.

Every day, Greg starts out afraid. He says, “Wesley, I scared.”

We talk about why & then we slow down & take life one moment at a time…

For Greg it’s very important NOT to jump ahead or skip steps.

#TheLuckyFew Image
5/ Yesterday, while eating waffles, Greg saw me making his lunch. I was being efficient. Greg threw a fit.

It totally messed him up because it meant I was rushing to the next thing without enjoying the present moment.

He NEEDS to absorb EVERY portion of NOW. Why?

#UpSyndrome Image
6/🎥 When Greg can relish exactly where he is & what he’s doing, all is right in the world.
 
Dancing to THIS song.
Eating THIS donut.
Petting THIS dog.
Looking at THIS snow.
Telling ME he loves me.
 
For Greg, this is what he wants in life. NOW matters most.
 
#DifferentNotLess
7/🎥 In contrast, what do I do?
 
While steamy waffles are on my plate, I worry about a meeting or a challenging person I’ll see in 3 hours. I review data I need for a patient’s #COVID treatment.
 
I cheat NOW of JOY.

Instead Greg finds #Hope in belief…watch👇
 
#T21 #MedLasso
8/ Back to #QualityOfLife.
 
If QOL is the ability to give and receive love, then Greg is teaching me a #MasterClass.
 
I am at the foot of Picasso‼️
 
So what about his fear at the start of each day?
 
What can I learn from him about FEAR?
 
#FindYourTribe ImageImage
9/ He starts out anxious…but day after day, I watch what happens.
 
As he takes each moment for what it is, and only for that, his day unfolds with beauty & #grace.
 
He dances at the YMCA. He makes some art. He hugs a friend. He jokes with others to make them laugh. Image
10/ The most beautiful lesson of all comes from the pure love I witness between Greg & his sister, my wife. There’s a love of complete giving.

Reckless abandon.

They show me that I can tumble into offering myself to another and gain immeasurable riches: the law of the gift! 🎁 Image
11/ Do you know about the “QOL Gap”?

Data show that if someone’s “expected vs actual” QOL are close, there’s a narrow QOL Gap, & they are happy. If they EXPECT something different than they get (large gap), they’re unhappy. It’s all about expectations.

bit.ly/3BRZ48w ImageImage
12/ Resentment come from unmet expectations.
 
Greg & “philosopher” Michael J. Fox (severe Parkinson’s) @realmikefox teach me that happiness increases if I ⬆️ my acceptance and ⬇️ my expectations.
 
Fox: “Gratitude makes optimism sustainable. Keep striving for gratefulness.” Image
13/ This last point is proving helpful in #LongCOVID.
 
Using ACT – Acceptance & Commitment Therapy - we are all learning how to maintain a NARROW QOL GAP, maximize gratefulness, and boost happiness while we wait for more science & answers.
 
LINK: bit.ly/3pkJblL
14/ Greg’s ability to accept life on life’s terms is remarkable. 🔑

Acceptance is the answer to so many problems. When I’m disturbed, it’s usually because I find a person, place, thing, or situation unacceptable. I can find no serenity until I accept.

Greg models this.
15/ What’s the Gold of Greg's MasterClass?
 
Happiness is not “all or none.”

I’ll dive into the deeps of personal change & do the work to increase my capacity to give & receive love…increasing my quality of life through acceptance of what is.

Taking life on life’s terms.
16/fin
When I pick up Greg @FriendsLifeNash, as we’re driving home, he invariably gets a little quiet…thinks…and says to me, “Wesley, I had a good day today. D’ya wanna go on a honeymoon?”
 
And I realize, “Greg, you and I, in this moment…we ARE on a honeymoon!”
 
#Cherish Image

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More from @WesElyMD

Aug 1
1/🧵Long-COVID Defined

🔸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…

bit.ly/3Ys30u0
Image
2/ NASEM 2024 Long Covid Definition:

“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… Image
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.”Image
Read 14 tweets
Oct 17, 2023
1/🧵 Long COVID Disease State
 
COVID infects us & Interferon causes 3 dastardly plots:
📌 We absorb ⬇️ tryptophan & convert ⬇️ Serotonin
📌 Platelet pathology ⬇️ stores of Serotonin
📌 Vagal nerve signals peripherally ⬆️ impairs brain function & memory

bit.ly/3M5F9ZV
Image
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. Image
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

TY @cooney_liz for this @statnews piece!

Read 4 tweets
Oct 10, 2023
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 Image
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.”
Read 25 tweets
Sep 27, 2023
1/🧵 Post-Infectious Syndromes

…a Doctor’s admission
 
📌 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 Image
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.
 
bit.ly/3sZH8s2
3/ What is #LongCOVID?

Well, it’s not new…update👇
 
Acute Covid triggers #MECFS as do other infectious agents.
 
“Triggers” means temporal association not “cause” in a mechanistic sense.”

Think also #LongLyme #Fibromyalgia & more

bit.ly/3RyMJ34
Read 8 tweets
Sep 6, 2023
1/🧵 Long COVID - new @TheLancet data

📌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

Thoughts…

bit.ly/3sHrwt9

Image
Image
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.
Image
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.

💥 fatigue, headache, neurocognitive, dyspnea, arthralgia, chest pain and tachycardia 💥 Image
Read 8 tweets
Aug 24, 2023
1/🧵This weeks 2 important studies on Long COVID
 
📌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
Image
Image
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.
3/ CAVEATS:
First, these are US Military Veterans

✏️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.
Read 6 tweets

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