I've debated for a long time about being public with this, bc it's heavy & I still haven't come to terms with it. But I have a rare pre-COVID datapoint so will do it, hoping it helps people:
Right before I got COVID, I did neuro testing to see if I had ADHD.
My processing speed was in the 96th percentile (meaning it was higher than 96% of people who took the test).
After I got COVID and my brain issues started, I did the same testing with the same provider, and my processing speed had dropped to the 14th percentile. #LongCovid
2/
Having low processing speed affects everything. It impacts basic communication with people, like texting & talking. Not only how long it takes to actually communicate, but how much you ingest about what you are reading/hearing. Relationships become hard to maintain. #LongCovid
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Things like driving - where you *have* to make fast decisions - are much scarier & often not possible at all. Common sense decision-making - like putting on potholders to take something out of the oven - are related to processing speed too, & are scary to find suddenly absent. 3/
Processing speed impacts memory, because it impacts how fast you can register memories. It impacts emotional awareness & how fast it takes to know how you're feeling. The downstream impacts of having suddenly lower processing speed affect identity in a serious way. #LongCovid
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Processing speed impacts how much you can hold in your head, how you weave the world together and make sense of it, the thoughts that come up when you think about the people, places, ideas that you love. It turns those processes into just a void, a blank wall. #LongCovid
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Intelligence tests aren't ideal & are rooted in problematic ideas, so I'm not suggesting they are key. But these processing speed drops are substantial & happening to many with #LongCovid, esp those with new ME/CFS, which has processing speed deficits as part of the illness.
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This is still happening to so many people, despite vaccination, despite pretending like the pandemic is over. The public deserves to know the actual risks of what can be lost.
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My tangible ask of people reading this: please continue to mask, or start again if you've stopped, & please implement ventilation protocols where you have power to do so (including your own homes), & please stay home when you're sick, even if you test negative for COVID.
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One thing I’ll add to this: these were full neurological evaluations, and both tests showed no anxiety or depression.
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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:
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/