Another 🧵. I recall when, early in the #COVID19 pandemic, patients with #MECFS and clinicians/researchers who work with them, warned about #LongCOVID before there was time for cases to develop and thus for many folks to start to experience the syndrome. Early but prescient. 1/n
We’re now seeing hopeful reports of people who are recovering or have recovered from #LongCOVID. I want nothing more than for people to be able to walk away from the horrors of post-exertional symptoms, which I discussed in another thread. This one is about survivorship bias. 2/n
There’s a story so famous about survivorship bias that it’s on the esteemed academic website, Wikipedia. The U.S. military asked Abraham Wald to study airplanes returning from combat to determine how best to distribute armor to prevent the airplanes from being shot down. 3/n
You see, armor is heavy, so putting armor all over the plane would prevent it from being able to fly well. Initially the idea was to determine the areas of heaviness damage and to place the armor there. Makes sense, right, to cover the holes before they are holes. 4/n
The problem with that logic is the damage to the planes that returned to the base was not sufficient to destroy them. This means the holes in planes that returned actually were a map for where *not* to place the armor and the parts that *weren’t* damaged required the armor. 5/n
What does this have to do with #LongCOVID? It means we need to define “improvement” endpoints for clinical practice and research carefully so we can study and compare. It also means we can’t make assertions that we can only learn from people who improve. 6/n
Because, at the end of the day, even though we may be looking at the experiences of people who have improved as one set of data that informs our journey to understand #LongCOVID and #MECFS, we’re *always* learning from the people who didn’t or haven’t yet. 7/fin

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More from @sunsopeningband

26 Jan
@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS Well, the last thing I want to do is to mischaracterize the position of my @4workwell colleagues, but there's (sadly) renewed interest in the topic, I drank a poorly timed cup of coffee, I'm procrastinating, and that must mean it's time for a PEM tweetorial. #LongCOVID #MECFS 1/n
@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS What's in a name? A lot of terrible things. Post-exertional malaise (PEM) is an episodic flare-up of symptoms that is related to activity. Let's break that down. The episodes mean patients will report symptoms that come and go: "crashing," "relapsing," or even "bonking." 2/n
@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS In the early phase of the illness -- and yes, it's invisible but it's an illness (a tweetorial for a different time) -- the relapsing-remitting nature can make it difficult for knowledgeable clinicians to identify the pattern and assist with the diagnosis in a timely fashion. 3/n
Read 12 tweets
25 Jan
I don’t know who needs to read this, but maybe the evidence of declining infections, hospitalizations, and ICU occupancy isn’t quite the marker for favorable “reopening” that any of our elected officials have held it out to be.
Instead, maybe these data are a fig leaf for doubling down on an economic system that’s as American as Mom and apple pie, but that can only run on a system of inequities that makes it unfair even in the best times and uniquely terribly suited for this time.
Or something. 😅
Read 4 tweets
25 Jan
* Narrator: the state was already “wide open.”
You know, because all that “closure” has been so “effective.”
Yep. Further evidence we should be “reopening” stuff here...
Read 4 tweets
23 May 20
@TomKindlon Thanks for sharing this article, Tom. Our @4WorkWell group proposed a heart rate formula in 2010 that was evaluated in the study. The threshold was intended to help people with #MECFS avoid exceeding their heart rate at ventilatory anaerobic threshold. pubmed.ncbi.nlm.nih.gov/20185614/
@TomKindlon @4WorkWell I think it’s important to point out the equation we proposed was never intended to accurately predict heart rate at VAT. It was intended to slightly under-estimate heart rate at ventilatory anaerobic threshold. The thought was this underestimation would provide a safety margin.
@TomKindlon @4WorkWell The authors of the present study, very helpfully, provide us with some important subject-level data in Figure 1. These data can help us get an idea of whether the formula we proposed in 2010 actually underestimates the heart rate at lactic acid threshold, as originally intended.
Read 14 tweets

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