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
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)
"Fatigue turns the most mundane of tasks into an “agonizing cost-benefit analysis,” @turnoftheshrew said. If you do laundry, how long will you need to rest to later make a meal? If you drink water, will you be able to reach the toilet?"
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"Only a quarter of long-haulers have symptoms that severely limit their daily activities, but even those with “moderate” cases are profoundly limited. @julialmv still works, but washing her hair, she told me, leaves her as exhausted as the long-distance runs she used to do." 3/