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
This has massive implications for care, research, immunity, etc. A few points:
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-Those who *did* get tested in the first wave were disproportionately 1) severe/hospitalized or 2) wealthy/connected. Any dataset created on first wavers who tested positive will automatically be biased in these ways. #LongCovid
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-If we understand that so many more people were infected than we thought, it gives us a much better understanding that natural immunity is not enough, and that reinfections are not only possible, but likely.
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-Any argument saying "they didn't test positive" is truly meaningless. It just means that the person saying it doesn't have a baseline understanding of the pandemic, both in terms of case numbers but also the months without widespread testing availability. #LongCovid
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This doesn't even get into PCR accuracy, which is still not very accurate, especially for younger people.
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.
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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I feel bad for everyone who was exploited in this article. The blame obviously lies with the author; I can't get over the fact that there are people willing to try to discredit the experiences of millions of people, in exchange for some funding behind the scenes.
I also think there were advocacy gaps that allowed this to happen. And I feel frustrated, because this harms our whole movement.
I hope #LongCovid groups take away a few lessons from this, including:
Advocates must be historically informed. There's a long history of...
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discrediting virus- and infection-initiated illnesses, in many cases starting with articles just like these. This happens constantly in ME & Lyme & happened early on with AIDS & other illnesses, & has started ramping up with #LongCovid.
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