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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

Apr 17
Today, a post about viral persistence, antivirals and how it plays into the complexity of #LongCOVID and other post-acute infection syndromes (PAIS). If you've been following me for a while, you probably know that I've been saying for a few years now that LC is a complex 1/
chronic disease state that will not have *one* cure, because it doesn't have one root cause that is common across all pwLC. When we're thinking about PAIS, I tend to like the "burning house" analogy: the house can be burning quickly (aggressively progressive disease), slowly 2/
(kind of a 'smoldering' disease state), or intermittently (relapsing-remitting: you have terrible, disabling periods but then you return to baseline for a time). The house will burn at different rates depending on what the house is built of (genetics and past medical history). 3/
Read 17 tweets
Apr 16
I know #LongCovid twitter has been buzzing today bc @NIHDirector has unambiguously named viral persistence as a driver of LC pathobiology. I’m thrilled to see this too and I view it as an historic moment. However, today I’d like to do a little @microbeminded2 appreciation post 1/
In 2020, before the federal gvt had even acknowledged LC, and my team was burning out trying to manage 1000s of acute COVID patients and 100s of LC patients (then named “post-acute COVID Syndrome”/PACS), Dr Proal reached out to my team and told us about viral persistence and 2/
the role of persistent pathogens in other post-acute infection syndromes. I’ll freely admit I didn’t know what to do with the information she was sharing: I felt like we had a good hand on #LongCOVID just by treating dysautonomia and POTS but already in the back of my mind I 3/
Read 10 tweets
Apr 5
The folks out there pushing Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) for infection-associated disease states like #LongCOVID, #MECFS and chronic #Lyme produce bad science and peddle harmful/dangerous rhetoric are truly deplorable, but what's more, 1/
when you actually dig into their logic and rationale (outside of running expensive courses, siphoning gvt funding for pointless research and patting one another on the backs) for pushing GET and CBT, I think the most disappointing thing is just how simple their thinking is. 2/
Make no mistake, these are academics and clinicians who are IN LOVE with their own intelligence, yet when you push on the principles behind their research and their clinical processes, it's all so...underwhelming. I mean, imagine taking hundreds of millions of dollars of gvt 3/
Read 9 tweets
Mar 15
Today is #LongCovidAwarenessDay. A day for acknowledgement of the now hundreds of millions of people worldwide who have had their lives indelibly changed by #LongCOVID. This year's Long COVID Awareness Day comes with an edge, though. If we were a thinking, anti-ableist 1/
society, when #LongCOVID was first emerging as a disease state that could cause permanent disability, government leaders would have understood the *existential* threat that we were facing and made decisive moves to protect the population. Instead we saw half measures and weak 2/
decisions that pandered to corporate interests and scoring political points. People with #LongCOVID were othered, patronized and gaslit whilst performative efforts were made to help. As the years have passed, we have seen more protections slip, we have seen more health 3/
Read 9 tweets
Mar 15
This afternoon (US time) I was asked for comment on the recent statements on #LongCOVID in Australia. Here is the statement I provide:
As a scientist, an Australian and one of the world's leading authorities on LongCOVID I was disgusted to see John Gerrard's irresponsible 1/
comments regarding #LongCOVID in the media. The most prominent scientific journals in the world have published systematic reviews of the literature highlighting the fact that 7-12% of acute SARS-CoV-2 infections result in Long COVID - a chronic disease state that has no 2/
approved treatments. #LongCOVID can affect people of any age, gender and health status and according to Dr David Cutler, a leading health economist, it is on track to cost the US government $3.7 Trillion dollars. All consensus science points to the fact that Long COVID is a 3/
Read 5 tweets
Mar 12
I wanted to share some additional thoughts, insights and next steps about our latest #LongCOVID research with the brilliant @VirusesImmunity and the work led by @SilvaJ_C, @taka_takehiro, @wood_jamie_1, @LauraTabacof and so many others. If this is the first time you're seeing 1/
this work, I highly recommend checking out @VirusesImmunity's breakdown of the study. It is detailed and complete. Rather than replicating that, I'm going to share some additional thoughts and next steps for the research. The first thing that this study provides us with some 2/
insight on is why #LongCOVID may disproportionately affect women. The findings of this study indicate that testosterone may be *protective* against the manifestation of not only certain LC symptoms, but also the overall severity of LC symptoms. Did you know that for decades, 3/
Read 12 tweets

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