If there was one pandemic-related piece of info I wish people would learn, it's this:

For every 1 recorded COVID case, there are 3 unrecorded cases.

*Most* people who got COVID don't have a positive test because they didn't get any test.

cdc.gov/coronavirus/20… #LongCovid

1/
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

nature.com/articles/s4158…

2/
For 2020 overall (including both first and subsequent waves), estimates were 1 recorded case for every 7-8 unrecorded cases.



This has massive implications for care, research, immunity, etc. A few points:

3/
-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

4/
-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.

5/
-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

6/
This doesn't even get into PCR accuracy, which is still not very accurate, especially for younger people.

This study showed that only 48% of kids and 80% of adults with COVID tested positive via PCR: journals.plos.org/ploscompbiol/a… #LongCovid

7/
This study showed only 10% of kids with COVID tested positive via PCR! (COVID was confirmed by seroconversion 6 weeks later).

#LongCovid

thelancet.com/action/showPdf…

8/
A reminder that using antibody tests to confirm COVID isn’t any better:

9/

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More from @ahandvanish

3 Nov
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.
Read 4 tweets
27 Oct
New paper on 10,024 breakthrough infections shows that vaccination does not prevent #LongCovid.

medrxiv.org/content/10.110…

1/
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!

2/
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.

3/
Read 5 tweets
12 Oct
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.

1/
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/

In endemic conditions, reinfection would likely happen after about 1.5 years.


3/
Read 5 tweets
6 Oct
The WHO's Clinical Case Definition for #LongCovid is up!

Symptoms include fatigue, shortness of breath, cognitive dysfunction, memory issues, post-exertional malaise, menstrual & period problems, altered smell/taste, blurred vision, chest pain, dizziness, intermittent fever...1/
cough, gastrointestinal issues (diarrhea/constipation/acid reflux), abdominal pain, headache, joint pain, muscle pain/spasms, neuralgias, new onset allergies, pins & needles sensations, depression, sleep disorders, tachycardia/palpitations, anxiety, tinnitus & hearing issues.
2/
The larger description and process is published here:
apps.who.int/iris/bitstream…

#LongCovid

3/
Read 4 tweets
2 Oct
Turning a Corner in ME/CFS Research: mdpi-res.com/d_attachment/m… #pwME #LongCovid

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:

1/ Image
-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

2/
-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
3/
Read 5 tweets
23 Sep
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.

But...

1/
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...

2/
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.

3/
Read 14 tweets

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