I mentioned treatments on this panel today - #LongCovid providers need to learn what is available from existing post-viral illness & myalgic encephalomyelitis experts.
This list of treatments is from the ME/CFS Clinician Coalition & is super useful:
It's been a rough week of learning that the Covid info in the general public is way worse than I understood.
I didn't understand that doctors are *still* telling people they're 100% safe from transmission/transmitting if they're vaccinated, even if they're 8 months out from vax.
I didn't understand that people are sending their kids to school despite someone in the house having Covid.
I didn't understand the cognitive games & justifications people were using to go out with friends even if their partner is ill.
I've reached a new level of hopelessness I didn't think was possible. The amount of information that needed to be communicated to the public like 4 months ago is just not happening, and people are taking advantage of that to be selfish.
This is an average number which has improved over time. In the first wave, when tests were not available, the best case estimate is that there was 1 recorded case for every 33 unrecorded cases! #LongCovid
Interestingly it does show a possible small reduction in the likelihood of getting certain #LongCovid symptoms, including fatigue and possible cognitive and neuropathy symptoms, & a possible small increase in other LC symptoms (headache, abdominal symptoms). More data needed!
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And it does show a substantial decrease in severe acute outcomes, like ICU admission, respiratory failure, death, psychotic disorders, and thromboembolisms, as well as a substantial decrease in loss of sense of smell.
I've started to hear cases of people who got COVID twice - who recovered the 1st time, but got #LongCovid the 2nd.
This is in line with everything we know about infectious-onset conditions. The body cannot sustain hit after hit to the immune system without consequences.
We saw reinfections start happening last summer for the first wavers. The research below shows reinfections could happen as early as 4 months after infection. 2/
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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