I am sick of my cognitive dysfunction being described as "brain fog" by the media and public. In the hope of educating the uninformed masses and to advocate for those suffering with it I am hoping to build up a useful resource about what cognitive dysfunction actually is and good ways to describe it. If you have some quotes from reputable sources please feel free to comment at the end of this blog and hopefully we will have a document we can refer back to when talking to Health Care Professionals and the Department of Work and Pensions etc.
First up a super Super-thread from Putrino Lab at Mount Sinai Hospital.
"OK. As promised, here is a super-thread on cognition and Long Covid. 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 may deviate significantly. This is about my ready and experience of cognition and Long Covid but much of this may apply to offer infection- associated chronic illnesses such as MECFS, Lyme, POTS to name a few. Lets start out with naming. I try not to use the term "brain fog" because I don't think it conveys the seriousness. PWLC are experiencing cognitive dysfunction that often results in cognitive impairment.
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 synthesise information, form plans, emotionally regulate), speech production (especially word finding).
Less often we are seeing issues with short and long-term memory. If I test your short term memory exclusively I say "remember these 5 words" and most folks with LC can recall the 5 words I give them. However in their day to day their 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. Executive function and language are the big areas of cognitive dysfunction we are seeing in LC.
What sort of cognitive impairment does this result in? The majority of people 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 they can still function but everything takes cognitive effort. I.e. they can still drive but you need time to recover. They can still be on an intense challenging zoom but need to dim the lights and chill for 20 minutes afterwards. The general ability to "function" but not thrive in a 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 ageing" from a HCP. Long Covid cognitive impairment is real and NOT just some by product of social isolation, depression or natural ageing. That is a lazy clinical association that is indicative of how little we understand how to diagnose and treat these things. In addition some folks with mild cognitive impairment want people with LC experience moderate-severe impairment. These are the people who can no longer safely drive, no longer work the hours or the job 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 of cognitive disability sometimes even this does not trigger the need for intervention because you can still "function". This is extremely frustrating and needs to change because so many with LC, MECFS, POTS, Lyme and many others get no care because they're "high functioning enough" to "get by" according to mayors, worker's compensation and long-term disability. This is criminal.
Also of note is that much of the cognitive impairment can be intermittent (it comes and goes), meaning that you can see your doctor and feel fine but be highly symptomatic as soon as you leave or the day or the week after. That's why I implore you, don't stop at "well you look fine to me" or "all your tests are within normal limits" to your Long Covid patients. LISTEN to them, UNDERSTAND that cognitive impairment is intermittent and that most cognitive screenings (like the MOCA) have significant ceiling effects, meaning that someone can pass MOCA with flying colours and still have serious cognitive dysfunction and impairments.
So we have a situation where somewhere in the neighbourhood of 60-90% (depending on the study) of people with Long Covid 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 literature.
Our brains account for about 20% of the 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 (for PWLC and PWME) we see that these are so often conditions where our physiology is in energy crisis: chronically low waking cortisol, mitochondrial dysfunction, issues with getting blood (oxygen) where it needs to go due to platelet pathology and Microclots and neuro-inflammation and autoantibody production all leads to a perfect storm of cognitive dysfunction that is serious, but often intermittent, affects the highest functioning parts of our Brian first - executive function requires a lot 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.
Cognitive remediation therapies and rehabilitation will help as long as they aren't too exerting but they must not replace the need for clinical research that addresses physiology".