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May 1, 2022 25 tweets 10 min read Read on X
Ok. As promised, here is a super-🧵 on cognition and #LongCovid. This will be a combination of published material and things that we have observed in-clinic. This is not intended to be definitive nor epidemiological and so it is highly likely that your personal experience (1/n)
may deviate significantly. This is about my reading and experience of cognition and #LongCovid but from what I have seen shared in the comments of my tweet yesterday, it seems that much of this may apply to other infection-associated chronic illnesses (h/t @microbeminded2) (2/n)
such as #MECFS, #Lyme and #dysautonomia/#POTS to name a few. Let’s start out with naming. I try not to use the term “brain fog” because I don’t think it conveys the seriousness. People with LC are experiencing cognitive dysfunction that often results in cognitive impairment (3/n)
So what sorts of cognitive dysfunction are people experiencing? Most often, we observe issues with high-level cognitive functions: executive function (the ability to process and synthesize information, form plans, emotionally regulate), speech production (esp. word finding) (4/n)
less often, we are seeing issues with short and long-term memory. Now, let me qualify this because I know so many people feel like their short-term memory is shot: if I test your short-term memory exclusively, I.e. I say “remember these five words”, *most* folks with LC can (5/n)
recall the five words I give them. However, in their day-to-day they have short-term memory fails them because they have issues with executive function: issues with selecting which things are *important* to attend to and remember, and therefore they don’t remember. In cases (6/n)
of hospitalized COVID and #PICS we are seeing more pure memory issues presenting, which is another example of how PICS is a different kettle of fish to #LongCovid and shouldn’t be conflated. So. Executive function and language issues are the big areas of cog dysfunction (7/n)
we are seeing with LC. What sort of cognitive impairment does this result in? The majority of ppl we see have “mild” cognitive impairment (a misnomer because anything that messes with your sense of identity should never be called “mild”), but in this context it means that (8/n)
they can still function, but everything takes more cognitive effort. I.e. can still drive, but you need a minute to recover. Can still be on an intense, challenging work zoom, but need to dim the lights and chill for 20 mins afterwards. The general ability to “function” but (9/n)
not thrive in the way that they used to which is not only incredibly distressing but also incredibly maddening when it is met with “you know, everyone forgets things” or, “this is just normal aging” from a health care provider. #LongCovid cog impairment is real and NOT (10/n)
just some by-product of social isolation, depression or natural aging. That is a lazy clinical association that is indicative of how little we understand how to diagnose and treat these things. In addition to folks with mild cog impairment, many ppl with LC experience (11/n)
mod-severe impairment. These are the people who can no longer safely drive, no longer work the hours or the job that they used to and in many cases require assistance with activities of daily living. Sadly, just so you know where the line is, with our current evaluations (12/n)
of cognitive disability sometimes even this level of cognitive impairment does not trigger the need for intervention b/c you can still “function” I.e. you don’t need a home health aide at your house every day to assist you. This is extremely frustrating and needs to change (13/n)
because so many with #LongCovid, #MECFS, #POTS, #Lyme and many others (don’t even get me started on acquired brain injury) get no care because they’re “high functioning enough” to “get by” according to payors, worker’s comp and long-term disability. This is criminal. (14/n)
Also of note is that much of this cognitive impairment can be intermittent (it comes and goes), meaning that you can see your doctor and feel fine (due to time of day of the appointment or the fact that your nervous system is primed for your appointment) but be highly (15/n)
symptomatic as soon as you leave or the day or week after. That’s why #medtwitter I implore you, don’t stop at “well you look fine to me”, or “all your tests are within normal limits” to your #LongCovid patients. LISTEN to them, UNDERSTAND that cog impairment is often (16/n)
intermittent (not just in LC but many conditions) AND that most cognitive screenings (like the MOCA) have significant ceiling effects, meaning that someone can pass the MOCA with flying colors and still have serious cognitive dysfunction. And impairments. So, we have a (17/n)
situations where somewhere in the neighborhood of 60-90% (depending on the study) of ppl with #LongCovid are reporting some form of cognitive dysfunction. The next question is “why”? We are still searching for answers, but let me give you my best theories based on the lit. (18/n)
Our brains account for about 20% of our overall energy requirements, which is staggering given that it accounts for 2% of our total body mass. The brain is an energy hog, and the more publications that emerge (in both #LongCovid and #mecfs) we see that these are so often (19/n)
conditions where our physiology is in energy crisis: chronically low waking cortisol, mitochondrial dysfunction, issues with getting blood where it needs to go due to platelet pathology and microclots (h/t @resiapretorius, @dbkell, @doctorasadkhan and #teamclots) and (20/n)
neuroinflammation and autoantibody production (h/t @VirusesImmunity and @michelle_monje) all leads to a perfect storm of cognitive dysfunction that is serious, but often intermittent, affects highest functioning parts of our brain first - executive function requires a LOT (21/n)
of energy - and can be MASSIVELY affected by our environment and daily demands (body position, environmental temperature, level of exertion (emotional, cognitive, physical), diet, hydration, sleep, etc). Ok. So what do we do? Test, test, test everyone’s cognition, and test (22/n)
regularly. I know, I know all my cog neuroscience friends - we don’t have baselines. Guess what - DOESN’T MATTER. Test everyone regularly to get a sense of their personalized cognitive performance “fingerprint” and work WITH them to optimize. My team does this EVERY DAY (23/n)
with high cognitive performers like eSports athletes and F1 drivers and it works to improve performance. So this is where we start. Use cognitive tests without ceiling effects that will show you where your patient lands in a normative population. We personally use (24/n)
@BrainCheck, but there are many that do a good job. Cognitive remediation therapies and cog rehab will help so long as they aren’t too exerting, but they must not replace the need for clin research that addresses physiology. I’m out of tweets on this thread, hope this helped! 🙏🏻

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More from @PutrinoLab

Oct 20
This paper was published last week about #COVID, #LongCOVID and its parallels. First, despite the provocative title, I urge people to read the paper the whole way through, rather than making assumptions about what you presume the paper will conclude.
1/ajpmfocus.org/article/S2773-…
The purpose of the paper is to answer a direct question: Is use of the term "Airborne AIDS":
a) justifiable
b) overly provocative and wrong, or
c) is the truth somewhere in between

The paper (IMO) does a good job of exploring the available literature that we have to answer
2/
this question. I wanted to focus my comments on this thread on some of the discourse that has emerged around this paper. The first is that it is valuable to learn from analogy and metaphor. Whether it is an entirely novel illness or a variant of an existing illness, creating
3/
Read 21 tweets
Oct 18
Great to see this published and out there. It's a simple paper that shows us that folks with #LongCOVID, #MECFS and other complex chronic illnesses can benefit from using symptom tracking apps like @visible_health, designed FOR patients, BY patients.


1/frontiersin.org/journals/digit…
Let's break down some of the findings:
- The survey was sent to 2636 active users on the Visible platform, and 1301 responded. This translates to a roughly 50% response rate, which is very high for app-based consumer surveys (average usually sits around 5-10%), which means
2/
the chance of non-response bias (the risk that there is a silent majority not answering your questions in the way that the responders are) will be much lower than most consumer surveys that are conducted.
- The breakdown of respondents:
- 42% #MECFS
- 31% #LongCOVID
3/
Read 12 tweets
Sep 27
A few days out from #UNGA80, I wanted to reflect on the session we took part in and the media responses since. Mount Sinai was one of the 150 organizations that signed the global pledge to advocate for healthy indoor air. The event itself featured four panels of speakers who
1/
came from all walks of life, all ages, all levels of experience, expert academics and people with boots on the ground experience in helping communities and all came to the same conclusion: access to clean air is not just a priority, it is a fundamental human right. Violet also
2/
took the stage. Why was she there? As @MaxPemberton was so willing note: "...just 19. She's no doctor or scientist..."
No, she isn't but she is a member of a generation that has been fundamentally failed by the "adults", "doctors" and "scientists" that Pemberton seems to
3/
Read 21 tweets
Sep 15
Hi there, thanks for reaching out. Sorry to hear about your recent COVID infection. If you don't have pre-existing Long COVID, infection-associated chronic illness then there are some basic guidelines that exist to slowly ease your way back to exercise. First, and most
1/
unambiguously: do NOT rush back to exercise if you're sick or symptomatic at all. General guidelines for viral illnesses typically will encourage waiting at least 10 days from your initial infection-onset, PLUS at least 3 symptom-free days before resuming any exercise that
2/
you were previously comfortably routinely completing. You may read that some guidelines encourage following the so-called "neck rule": if you have symptoms BELOW the neck (e.g. chest pain, shortness of breath, resting tachycardia) then rest completely, but if you have symptoms
3/
Read 10 tweets
Sep 3
Happy to share some new #LongCOVID data that went to pre-print today. Before we begin breaking this down, one caveat: this work MUST be validated by a well-powered placebo-controlled randomized controlled trial before we can get too excited, but this is

1/researchsquare.com/article/rs-750…
an exciting first step and something that we hope will deepen our understanding of use of combination antivirals in the #LongCOVID community. A bit of background about how we got here: in early 2025 our team was part of a consortium that published a roadmap for targeting viral
2/
reservoir in pwLC. In this statement piece, we spoke about the need to be trialing not just monotherapies, but multi-drug combinations and for longer periods of time than just a few weeks. After publishing this work, we started to seek out docs that
3/thelancet.com/journals/lanin…
Read 17 tweets
Aug 25
I was asked to respond to this. Honestly I don't pay too much attention to this account because I prefer to spend energy on people and things that build community in #LongCOVID and IACI rather than curating divisiveness, but this shouldn't go without rebuttal so here we go.
1/
First up, as someone who works in innovation, I *love* unpopular opinions - that's where alternative points of view live that allow us to look at a problem in a different way. But IT IS disingenuous to dress up an *uninformed* or *misleading* opinion as "unpopular" - that's
2/
not honest. So let's dig in: Todd's opinion is that we've put too many resources into studies investigating viral persistence. In other tweets he has also claimed that it is a "disproportionate" amount of resources. Let's start by looking at evidence of viral persistence in LC 3/
Read 25 tweets

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