ME/CFS is a multi-system disorder, with dysregulation of the HPA axis and of metabolism of the central nervous system and of body systems generally. The range of abnormal responses includes:
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-alteration of autonomic nervous system function
-lasting adaptations in energy metabolism and the immune response
-orthostatic intolerance with reduction in cerebral blood flow on tilt testing
-variations in cortisol levels associated with increased fatigue. #pwME
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-disorganized circadian rhythms
-increased immune system activation as shown for example by increased pro-inflammatory cytokines and prolonged inflammatory responses
-alterations in muscle anaerobic threshold
-abnormal recovery after activity with post-exertional malaise #pwME
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-central sensitization
-changes in grey and white matter in the brain
-anatomical, physiological and electrical abnormalities in the brain
-chronic activation of the immune system, including autoantibodies directed at the central and autonomic nervous systems #pwME
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-impaired energy metabolism with associated oxidative stress
-dysregulation of the autonomic nervous system
-abnormalities of the gut microbiome
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/