4/ The BRAIN…it’s “so much more than its constituent cells. Each neuron connects with thousands of other neurons—and instead of a cacophony of connections, we have a synchronized symphony.
Until it’s NOT a symphony…as in #LongCOVID brain fog
📌54 studies, 1.2M people reporting
📌6.2% estimates of LC symptom clusters: body/severe fatigue, lung & cognitive
📌Women more pronounced
📌Duration ~9 mos among hospitalized & 4 mos non-hospitalized
🔹33k COVID vs 63k controls followed 1.5 yrs
🔹6% of COVID patients had not recovered
🔹Predictors of non-recovery included hospitalization, female, lung dz, older age, depression
💥Vaccination assoc w reduced symptoms in 7 domains
9/ We’ll need to rethink & retest approaches typical for physical & cognitive rehabilitation from usual ICU illness (#PICS) vs #LongCOVID due to realities of PEM/PESE.
Could this profound “fatigue” be due to widespread changes in mitochondrial biology?
10/ Many previously healthy patients can’t get by in daily life (eg, once hard core athletes now suffering Long COVID) w/out intense pacing approaches due to PEM & PESE
Guidelines help them.
Many scientists are studying exercise & cognitive protocols.
12/ Mechanism & Possible Treatment for Long COVID: 1
Ongoing viral replication (SARS-CoV-2 or EBV or CMV or other) which causes apro-inflammatory injury responses whereby at least antivirals are needed +/- immune modulation
13/ LC - Mechanism & Possible Treatment: 2
Persistent viral antigens cause a pro-inflammatory response (eg, microglial activation) whereby antivirals are no benefit but immune modulation could help
All evidence of the virus is gone but the pro-inflammatory response is triggered & will not resolve until immune dysregulation is fixed. Immune modulation may help vs tincture of time
Again the virus is gone & the immune system is creating an auto-antigen (mimicry) w auto-antibodies (think lupus) that won’t resolve so immune modulation will ultimately be required
In this study of 192,509 people from Jan 2021 to April 2022, the rate of hospitalization for COVID was up to 18X higher in people who for whatever reason were NOT vaccinated.
🔹S protein viral sequences that are immutable, immunogenic & accessible to neutralizing Abs
🔹SARS viral membrane, envelope or nucleocapsid proteins & structurally hidden epitopes
🔹Vaccines based on T-cell receptor constructs
✔️75% Protection >1 Year
✔️Not just help w death & hospitalizations
✔️Protect vs symptomatic disease
✔️Less viral transmission
✔️Fewer adverse events like myocarditis
📍as a #LongCovid patient you admitted on embarking to Turkey for pheresis that
📍this Tx was an UN-established long shot
📍but your life w this syndrome had devolved
📍as a scientist you now found yourself willing
📍while others conduct trials
2/ I see your choices in seeking therapy for #LongCOVID as brave & honest w cautious expectations cognitively & physically.
Most importantly, you’re demonstrating hope & a desire never to give up.
Knowing you, @pamelarbishop, and calling you friend is a gift beyond measure.
3/ For anyone who chides a highly intelligent person for pursuing alternative approaches to solving health problems #medicine scoffs at, seek empathy & read these truth-telling books 📚
QUESTION:
Is it OK for doctors to make unilateral decisions to limit life-sustaining therapy (eg, remove a ventilators) without patient/family discussion?
2/ Variable Approach to Limiting Life Sustaining Treatment for ICU Patients
N=12,850 patients in ETHICUS-2
% “NO DISCUSSION” at EOL was 2% in North America vs 37% in Latin America
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.