1st meet @pamelarbishop, a scientist in forced early retirement due to LC:
“I oscillate between fierce determination to get better & abject horror at the daily destruction of my body."
read on…
2/ A case-control study of 9k unhospitalized COVID pts treated w Paxlovid btwn March & June 2022 versus 47k patients w no antiviral or antibody treatment.
3/ It’s NOT a randomized trial, so we don’t know why people did or didn’t get Paxlovid.
In practice, we givemeds more aggressively (or want them ourselves) if we’re sicker.
So you might think those who didn’t take Pax would be less sick & do better. That’s not what was found…
4/ Compared to controls, treatment w nirmatrelvir (Paxlovid) was associated w 26% ⬇️ risk of #LongCOVID (HR 0.74 95% CI (0.69, 0.81).
Improved outcomes in 10 of 12 LC problems related to heart, blood clotting, fatigue, liver llung & kidney disease & brain outcomes.
Impressive.
5/ There was also a reduced risk of death by 50% and less likelihood of hospitalization by 30%.
Perhaps more striking is that there was a reduced risk of #LongCOVID among those unvaxxed, vaxxed and boosted.
But remember, it’s NOT RANDOMIZED.
Why does this matter?
6/ There is a LONG history of Case-Control studies being proven wrong once patients are placed into groups randomly, which is done to reduce bias & establish rigor in science.
There are all kinds of reasons that these people did & didn’t get Paxlovid, so to really know…
7/ We physician-scientists are designing randomized controlled trials w prospective data collection on risks & subgroups of #LongCOVID as primary outcome.
We do need longer follow-up bit for now I think these results are actionable. TY @zalaly
I have several additional points…
8/ The only way to 100% prevent Long COVID is NOT to get Covid.
Duh right?
So let’s review the data on #Vaccine reduction of Long COVID…
But first, let’s talk briefly about the status of human disability and societal costs of the #pandemic.
9/ Since mid-2020, the US alone has ~2 million newly disabled people from this post-viral syndrome.
Society won’t understand the full effects for decades.
The financial cost is estimated in the TRILLIONS 💰💰💰
12/ SO…
What are the data on risk of Long COVID in vaxxed vs. unvaxxed?
I will review 4 studies.
Bottom line: there’s about a 30% to 50% risk reduction (though the range across studies is 15% to 80%)
✔️ btw I’m paid $0 to share these data & have no stocks in pharma companies
13/ This UK study showed that receiving two COVID-19 vaccinations at least 2 weeks before COVID was associated with a 41% decreased odds of developing #LongCovid symptoms 3 mos later versus not being vaccinated when infected.
15/ In 740 healthcare workers with COVID who didn’t require hospitalization, 2 or 3 doses of vaccine was associated with 75% lower #longCOVID risk versus no vaccine.
Cool dose response: 41% LC in unvaxxed vs. 30% vs 17% vs 16% w 1, 2 & 3 doses 🎶
“Even if COVID-19 doesn’t kill us, the high morbidity of #LongCOVID justifies vaccinating all. The reasons for vaccination beyond averting severe disease & deaths are manifold, but the foremost is to prevent longCOVID.”
✔️ I also on Mastodon to post #science & #love there
✔️ Let’s work to lift ourselves from #suffering into #recovery
✔️ Hoping to learn, do good & provide a way forward.
18/ What are aome ways antiviral meds & vaccines might ⬇️ LongCOVID risk?
📍Reduce the initial viral load
📍Create a more controlled immunological response to the virus that the body can shut off later
📍 Prevent viral “ghosts” from creating ongoing antigenic stimulation.
19/fin
In conclusion, we’re learning how to stay in safe water
🔸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.