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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After a fairly fraught week I just want to take a moment to take a moment to say that IMO violence and the taking of a human life is almost always morally wrong. However, I think there is also a message that everyone should hear: 1/
Denying healthcare to people who have paid into it for their entire lives based on arbitrary or algorithmic factors is violence. Threatening to stop covering the cost of anesthesia for a surgery if that surgery surpasses an arbitrary amount of time is violence. Making the 2/
sickest and most disabled among us exert themselves and jump through endless hoops to prove they are sick is violence. Working everyday with people who have #LongCOVID, #MECFS, chronic #lyme, #Stroke, #spinalcordinjury, #ALS and many other conditions, I am constantly aware 3/
Great week for remote monitoring studies! Proud to get this one out in pre-print as well! In the previous study we pre-printed this week, we used data from the @visible_health app to see if we could predict symptom flares (we could), this study is a 1/ researchsquare.com/article/rs-538…
little more simple: we asked the users of the Visible Health (>1300 respondents) if monitoring their symptoms is helpful for disease self-management. The overwhelming response is yes - particularly for understanding and managing their energy budget. Respondents to this survey 2/
were primarily folks with #LongCOVID, #MECFS, #POTS and other complex chronic illnesses. This work once again highlights not just the importance of techniques such as pacing, but also the POWER of using objective DATA to inform your pacing practice. While we are actively 3/
So excited to finally see this study out in pre-print! This study is the largest of its kind to date: Using data from 4,244 people with #LongCOVID, #MECFS and other complex chronic illnesses, we took hundreds of thousands of data points across hundreds of days to see if we 1/
could predict crashes using physiological and self-reported data. Turns out - yes we can. Data related to variations in HRV could predict crashes in individuals with quite good accuracy. The caveat: your data was good at predicting your patterns of crashing, but not good at 2/
predicting other people's crash patterns: every person with #LongCOVID, #MECFS and other complex chronic illnesses has unique physiology and requires a personalized approach. I'm proud to say that this work is already leading to changes in the @visible_health product so that 3/
I’ve been seeing some classic Monday morning quarterbacking as the necessity of #COVID19 lockdowns are being discussed once again. As usual, we’re seeing a lot of hyperbolic statements and attempts to create conversations around comparative suffering which is always just a 1/
garbage response to anything. The reality is that we had a once in a century pandemic. The virus was spreading like wildfire and we had limited options to keep the public safe. Not just from COVID but from #LongCOVID. In March and April of 2020, New York City was the epicenter 2/
of the global pandemic. Things were rough and we still hadn’t shut down. My whole team was pulled into the hospital and deployed to provide support to stretched inpatient services since outpatient services were closed down, Central Park was a triage tent, the refrigerated 3/
Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane. 🧵 1/
In the before times, many of us who treated postural orthostatic tachycardia syndrome (POTS) and dysautonomia worked with folks who did not have associated IACCs. Many of us were unaware of IACCs because it wasn’t part of our training in a substantive way and what training we 2/
did receive urged us to “treat” with a psych referral. So we treated a lot of POTS that was highly responsive to exercise-based interventions: modified CHOP, Levine, Buffalo treadmill protocol. Evidence-based protocols that worked more often than they didn’t, especially when 3/
I know today is a frightening day for many with #LongCOVID, #MECFS, chronic #lyme and other infection-associated chronic conditions. Today, all I can offer is a small piece of advice and a small piece of reassurance. Advice: please take care of yourselves and practice some 1/
emotional pacing today. If the election news is affecting you, avoid doom-scrolling, poking the fresh wound and take some time to quietly process the news. What’s done is done, so try to manage as best you can right now. Action can come later.
Reassurance: I’m proud of the 2/
work my team has done and the discoveries we have made over the last four years. We did it without a cent of NIH funding. Our 6+ clinical trials we will complete over the next 3+ years will be completed without a cent of NIH funding. We won’t quit on you and there are some 3/