Incredible visit Thursday to the opening of Mount Sinai’s Cohen Center for Recovery from Complex Chronic Illness, led by the renowned @PutrinoLab! #LongCovid 1/
The Center is incredible and truly blew me away - designed on so many levels with patients in mind, with top notch care, using many of the most advanced tools available 2/
Some of the many tools patients are assessed with include:
And the space is so patient friendly - the lighting is not traditional medical space lighting, there’s no visual clutter that takes extra spoons to look at, and testing is done in a dimly lit space as light is often challenging for these patients 4/
There is a strong commitment to clean air and in addition to strong ventilation systems, these Visium UV lights are all over the ceiling, which kill viruses in the air! 5/
I also got to both meet and hear the incredible @microbeminded2 speak as Scientific Director of the space, and met some online friends @betsyladyzhets @meghanor and @PamBelluck too! 6/
And heard a moving performance from cellist @joshua_cello who is also living with #LongCovid 7/
Left feeling renewed and hopeful about not only this center, but also that the team is committed to training others to building similar centers with this model!
We are so lucky to have these brilliant people on our side! Enormous appreciation to everyone involved!! 💓💓💓 8/
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The fibrin also:
-promotes neuroinflammation & neuronal loss post infection
-promotes innate immune activation in the brain & lungs independent of active infection
-downregulated JAK-STAT pathway & targets of p38 MAP kinase, pathways that regulate NK cell activation #LongCovid 2/
They used a monoclonal antibody targeting the fibrin domain, and found it protected against microglial activation & neuronal injury, as well as from thromboinflammation in the lung after infection! #LongCovid 3/
I've been doing #TheNicotineTest (via 7mg patches) for a month now & it has greatly improved my quality of life.
Major caveat: I'm on ivabradine. The nicotine increases heart rate, & I wouldn't recommend to anyone w POTS who isn't on beta-blockers or ivabradine. #LongCovid 1/
The biggest change is feeling like I have more *oxygen* circulating in my body - the weird altitude-sickness feeling is lessened.
Major improvements to cognition/awareness (esp executive functioning & processing), and improved physical capacity and overall baseline. 2/
The first tolerance break I felt more air hunger and worse baseline than pre-nicotine, but every other tolerance break has been equal or better than pre-nicotine.
It feels like an excellent symptom management tool, but *not* a cure. 3/
This could cause additional impacts like deficits in platelet energy metabolism, or hormonal dysregulation (because platelets carry serotonin) #LongCovid
Because this video has caused so much willful misinterpretation, I want to clarify: in the clip I’m countering the myth that #longcovid is lingering symptoms of acute COVID, since many people think it’s just a cough. I should‘ve said “acute COVID”; brain fogged & trying my best.
The interview was an hour long & they edited it to 5 min. I talked their ear off about all hypotheses & the science behind each & it didn’t make it in - the piece was for a general audience. I talked about all the other things COVID can cause, include diabetes & clots, at length.
Anyone who is suggesting I don’t think #longcovid is from COVID (????) or that I don’t think viral persistence is a high priority hypothesis (????) are *actively* ignoring 3.5 yrs of advocacy & that I’ve been highlighting viral persistence since 2020
The most exciting hypotheses in #LongCovid and #pwME are ones that could have cures! This includes viral persistence and others, and also includes the itaconate shunt hypothesis. I'm going to tweet this video as I watch it to try to explain it more 1/
Dr. Ron Davis used to work on the Human Genome Project but switched to ME/CFS when his son got sick. He's the director at the Stanford Genome Center. He is focused on *a cure* for ME/CFS. "I believe it is a curable disease." 2/
He describes the common onsets of ME - usually viral, but can have other causes too, refers to a big parasite onset in Norway from a few years ago 3/
@TheCrankyQueer: highlight the need for trans inclusion in trials, including understanding how different labs may present; biomarker nuance
Oved Amitay: need to create a center of excellence to learn from trials in other diseases 1/
Oved: FDA needs to align on decisions across similar fields, needs cross-talk across similar groups
@Dysautonomia: Most even great researchers don't understand autonomic disorders, which happen in up to 2/3 of LC...is there an opportunity to offer autonomic training? 2/
@Dysautonomia: Also, need to make arms in these trials for pre-Covid POTS/MECFS - this helps learn about LC as well (ie does Paxlovid help pre-covid pts)