Today, someone told me that a negative test "proves the person never had COVID" (in ref to #LongCOVID).
Should we list, AGAIN, the reasons why "no + COVID test" is NOT a reason to assume the person didn't have COVID?
yes, yes we should! A🧵(1/9)
First, and this may be new to some of you: as Dr. William notes, COVID testing seems like it is not catching some of the newer variants. (2/9)
Second, early testing sucked. If you got tested early (first half of 2020) with all the symptoms of COVID but came up negative, you may well have had a false negative. One test kit sent to laboratories had a 33% fail rate. (3/9) npr.org/2020/11/06/929…
Third, early testing was inaccessible. Many who caught COVID-19 in March/April 2020 did not receive a test.
"In CA... 1138 people had been tested for the virus... despite several thousand who have likely been exposed" said The LA Times in March 2020. (4/9)
latimes.com/california/sto…
"But if you test them later, then surely we would know if they'd been exposed..."
Not necessarily.
Antibodies to SARS-CoV-2 may not last forever, especially if the initial infection was mild.
*Note: I found conflicting info on this one. (5/9) uclahealth.org/u-magazine/cor…
Finally, testing is/was/will always be a privilege. If you can't take off work to see the doctor or you'll get fired, you aren't getting tested. If you don't have health insurance and aren't sure where to get free care, you won't get tested. (6/9)
@CDCgov has a set of clinical criteria for "likely COVID-19" b/c they understood all these obstacles in testing. ndc.services.cdc.gov/case-definitio…

Finally, not having a positive test doesn't mean you never had COVID: it just means you can't prove that you did. (7/9)
I'm sure there's a name for this fallacy, because it's everywhere in science discourse.
Fallacy ahoy!
(If no one has proved it's true, that means it's false).
But... that's not how this works. That's not how any of this works.
(8/9)
I'm sure there is more, but this is plenty of reason to take it on board that many people with COVID would not have received accurate (or any) COVID testing. (9/9)
Courtesy of convo with @benedictecallan:
As per earlier convo with @ahandvanish, there are millions upon millions of never-diagnosed cases. Early in the pandemic numbers were estimated to be 10:1 undiagnosed to diagnosed. Now it's more like 3:1. charlotteobserver.com/news/coronavir…
In addition, not everyone mounts a robust adaptive immune response in the first place. #pwME were COVID-diagnosed but then later "failed" antibody testing. People without robust adaptive immune function may survive by relying on innate immune function (non-specific responses).

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More from @exceedhergrasp1

10 Nov
Survey Section 2 of the Chronic Illness Survey Adventure (#SC4D) is now open! Check your email for your invitation!
Didn’t get your invite? Let me help you troubleshoot right here. (1/9)
Did you check spam?
Sometimes mass mailings like this get dumped by your mail client. Qualtrics tries to minimize this in part by sending in small batches, but it doesn’t always fix the issue. Check spam and promotional folders! (2/9)
Are you sure you weren’t ruled out? (1/2)
If you are a healthy control, you may have seen a message saying you don't meet the criteria for HCs. If so, you would not get an invite to Section 2. (3/9)
Read 10 tweets
9 Nov
Acts of Helplessness, by Rumi

Here are the miracle-signs you want: that
you cry through the night and get up at dawn, asking,
that in the absence of what you ask for your day gets dark,
your neck thin as a spindle, that what you give away
is all you won, that you sacrifice belongings,
sleep, health, your head, that you often
sit down in a fire like aloes wood, and often go out
to meet a blade like a battered helmet.
When acts of helplessness become habitual,
those are the *signs*.
But you run back and forth listening for unusual events,
peering into faces of travellers.
“Why are you looking at me like a madman?”
*I have lost a friend. Please forgive me.*
Searching like that does not fail.
There will come a rider who holds you close.
Read 6 tweets
27 Sep
Now we get to another area of particular interest for me: circadian rhythms and #fatigue. Elizabeth Klerman presenting. (1/5) #sleep
How does sleep/circadian rhythms affect various body systems and ultimate effects?
First I've heard of health disparities, here; well done, Klerman. #fatigue #sleep
Circadian rhythms WILL affect results in studies. Researchers, take note!
Record time of events, blood draws, etc.!
Include sleep metrics in subjects!
Circadian =/ diurnal.
Most studies that say they're talking about circadian rhythms are actually referencing diurnal rhythms.
Read 6 tweets
27 Sep
Dragana Ragulja reports: what actually is cause of death in sleep deprivation?
Loss of life in test animals on Day 10 of sleep deprivation led to dissection and finding of serious increases in ROS in the gut in particular (1/3)
Antioxidants specific to the gut can 'rescue' the animals tho. (2/3)
Takeaways:
1) Sleep deprivation is a "bodywide phenomenon", says Ragulja.
2) Not all lack of sleep is created equal. Feelings of sleepiness can be blocked even though it's still fatal. "The fact that you feel fine on four hours of sleep does not mean you actually are fine." (3/3)
Read 4 tweets
27 Sep
ooooh, I am very interested in this! Pierre Magistretti is discussing the astrocyte-neuron lactate shuttle. I had a long conversation with someone who wrote a review paper on this one. (1/6) #fatigue #neurology
Lactate is required for energy for the brain. BUT -- it is not only this but also a signalling molecule for neuroplasticity & neuroprotection. (This idea of lactate being 'neuroprotective' is of particular interest to me.) (2/6) #fatigue #neurology pubmed.ncbi.nlm.nih.gov/21376239/
Magistretti is going at warp speed on this one, and I would have no idea what he was talking about if I hadn't already familiarized myself with the astrocyte-neuron lactate shuttle. However, he is clearly unfamiliar with #MECFS. (3/6) #fatigue #neurology
Read 7 tweets
27 Sep
Now we're up to Ron Davis and the metabolic trap hypothesis for #MECFS: yeast model for the metabolic trap. (1/7) #metabolism #fatigue
Tryptophan is largely metabolized by a protein made by an enzyme called IDO-1. A second enzyme, called IDO-2, may be a "more primitive" version of the same enzyme. IDO-1 is substrate-inhibited. (2/7) #metabolism #MECFS
In a small study with ~20 severe patients, all had at least one mutation in IDO-2. "It's not a requirement that you have a mutation in IDO-2" to have ME/CFS, says Davis. It doesn't rule out that mutations here can play a role. (3/7) #metabolism #MECFS
Read 9 tweets

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