What Is Brainfog? Cognitive Dysfunction In MECFS.
Brain fog is Cognitive Dysfunction
The medical term for what we experience as brain fog is "cognitive dysfunction" or deficits in attention, verbal and nonverbal learning, short-term and working memory, visual and auditory processing, problem solving, processing speed, and motor functioning.
In other words, the mechanical workings of your brain. Note that all of the examples refer to how you think, not what you think. This is different from "disordered thinking" which refers to unhealthy or illogical thoughts present in mental health disorders or "Formal Thought Disorders."
Some people will strongly advocate for saying cognitive dysfunction instead of brain fog as it maybe taken more seriously. While I support this, it does not solve the underlying problem: the type of cognitive dysfunction we call brain fog is exceptionally hard to describe.
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Potential Root Causes Of Brain fog
Glial Cell Dysfunction & Neuroinflammation
The basal ganglia are implicated in executive functioning skills in Parkinsons Disease. Basal ganglia and glial cell dysfunction has also been recorded in MECFS. Neuroinflammation is also associated with depression another disease that is known to cause brain fog and executive dysfunction. Inflammatory depression has also been recorded in MECFS. All of this suggests neuroinflammation as a potential cause of brain fog.
Low Brain Perfusion
Low brain perfusion and low brainstem perfusion has been recorded by multiple studies in MECFS. Low brain perfusion in tilt table testing was present even in ME patients who did not suffer from orthostatic intolerance. Low brain perfusion causes low oxygen in the brain which can cause migraine including atypical migraine. Brain perfusion is further decreased during PEM. Therefore, it is theorized that low brain perfusion may contribute to brain fog.
Neurotransmitter Imbalances
There are many theories around serotonin, dopamine, and norepinephrine disturbances in the brains of patients with MECFS. The ability of drugs like LDN, LDA, antidepressants, and amphetamines to reportedly decrease brain fog would suggest that these neurotransmitter imbalances may be responsible for brain fog. However, it should be noted that in patients with comorbid depression or ADHD these improvements would be expected regardless of the role of neurotransmitters in MECFS.
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Brain fog and Intelligence
One way to describe brain fog is as a loss of intellectual capacity. Every part of thinking is harder. "I used to be smart." Or "I am becoming stupid." Is a common way people describe brain fog when they go to the doctor.
On reason brain fog is so hard to describe is that in the same way that the severe fatigue in MECFS can nearly paralyze every muscle in the body before it stops you from lifting your arm, brain fog can slow your brain to near empty before it stops you from answering a question.
Brain fog is not just single cognitive dysfunctions like forgetting someone's name although it may cause that. Rather it is a layer of friction over every single act of mental function.
However, while I believe brain fog affects all intelligence, there are some areas it seems to affect more measurably.
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Short-Term Memory & Memory Formation
Brain fog can cause memory dysfunction similar to the early stages of Alzheimer's or dementia. Indeed many new MECFS sufferers fear that they are developing these diseases due to the sudden severity of memory loss.
Brain fog seems less likely to affect memories made before the onset of illness and knowledge and memories from childhood and early life are rarely affected. Rather it strongly affects working memory, short-term memory and memory formation.
Working memory is your ability to hold something in your head briefly. Most people's working memory holds around 7 items (such a digits of a phone number or items on a grocery list) Brain fog drastically reduces this number.
Short-term memory is responsible for remembering what has immediately happened. For example, remembering the content of a video you just watched. Lack of short-term memory can cause you to feel like time simply disappears when you do not remember what you have been doing.
Short-term memory loss in turn makes it difficult to form accurate memories. Therefore, people with MECFS often report it is as though years of their life simply did not happen. You may still feel the age you were when they got sick. On a day-to-day level failing to form memories means that items are easily lost and it is difficult to keep appointments or remember promises and commitments.
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Executive Functioning
These brain functions are most often associated with controlling focus and attention, with ADHD being the best-known executive functioning disorder. In addition to problems with working memory, executive dysfunction causes problems with
Task switching
Task initiation
Planning/prioritization
Self-monitoring (time awareness)
Inhibitory control
This means people with brain fog struggle to start tasks or resume them if interrupted. Brain fog also makes planning things more difficult. This is often due to issues with decision fatigue or feeling caught in a glitch where you simply cannot make a choice about what to do first and thus end up completely stuck.
Executive dysfunction caused by brain fog can also cause time blindness or an inability to accurately assess how much time has passed or how long an activity will take. This can lead to being labeled "unreliable" or "chronically late."
Finally, executive functioning is responsible for inhibitory control, or being able to hold yourself back from something that is nice in the moment but a bad decision long term. This is an especially difficult and dangerous complication for pwME because pacing requires immense inhibitory control.
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Auditory Processing & Verbalization
People with brain fog often report issues with conversations. This happens both on the input and output side. Audio processing dysfunction can make perfectly normal sentences sound like complete gibberish. This may mean we need sentences or questions repeated.
Likewise, verbalization requires translating our ideas into words. Brain fog can cause this process to simply stall out. The thought exists but the words do not. This can be incredibly frustrating and exhausting for all involved.
Because brain fog is intermittent, these problems often occur randomly. So someone with brain fog can be in the middle of a perfectly coherent conversation and suddenly just completely lose the ability to express their next thought. Or they can be having a discussion with a doctor and suddenly realize they have not comprehended the last 5 minutes of explanation.
This is not a conscious choice, it is simply the result of having unpredictable neurological dysfunction.
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Calculations / Mathematics
& Reading Comprehension
Many people who were in academically demanding fields prior to MECFS report severe decline in academic abilities. This primarily presents as difficulties with calculations and complex mathematics as well as reading comprehension.
I believe this is due to a number of factors previously discussed. For example, mathematics requires a strong working memory to hold onto the variables in a problem. Likewise, short-term memory is crucial for holding onto earlier paragraphs and concepts in a work of literature and connecting them to your current reading to form reading comprehension.
Difficulty in verbalization can also work backwards into difficulty with visualization. Mathematics and abstract scientific thought often involve taking a description in words and translating it in your head into abstract concepts and ideas. Just as brain fog is known to block translating abstract concepts into words, it may work the other direction as well.
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A Post-Learning Learning Disability
In many ways, brain fog is very comparable to a learning disability, particularly when it affects things like executive functioning and reading comprehension and so forth. But because brain fog based illnesses may occur after someone has their degree you can end up with an interesting situation where someone has the expertise that they could not relearn* but already know.
This is similar to how patients with dementia or alzheimers's will often still be able to speak eloquently on certain topics they specialized in or play memorized music on an instrument. When patients lose intelligence and working memory they often still retain knowledge and long-term memory.
This creates a very different type of low intelligence where rather than starting with a disadvantage and catching up overtime people with brain fog may start out strong or average but fall behind those who were once their peers. People with brain fog may still be able to work in careers that would otherwise be impossible given their level of intellectual disability, but their knowledge base slowly grows outdated and they may find themselves unable to keep up with learning new advancements in their field.
Additionally, formerly high intelligent patients often suffer the opposite of the dunning-kruger effect. Rather than being stupid people who think they are smart because they do not know what they are ignorant of, formerly gifted people with brain fog think they are stupid because they have a high benchmark for what normal thinking is.
*Note: plenty of people with brain fog still get degrees! Just as those with learning disabilities do. It is just harder, requires accommodation, and may limit or influence the type of degree they choose to pursue.
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Neurodivergence, Late Diagnosis & Masking
Brain fog can also be considered a form of neurodivergence just as learning disabilities are. Additionally, people with MECFS suffer not just from brai nfog but also from sensory sensitivities another form of neurodiversity. Finally, those with less severe autism or ADHD may find that executive dysfunction due to these neurodivergences that they were once able to deal with becomes disabling with the addition of brain fog.
All of this can lead to late diagnosis of ADHD and autism in people with MECFS. While these diagnoses may or may not be fully accurate, and that is a complex debate of its own, they can help people get the support that they need.
One commonality between people with MECFS and people with ADHD and autism is the strong presence of masking and pressure to mask. Masking refers to hiding one's neurodiversity in public. Because many people with MECFS spent decades of life living neurotypically, the pressure to act the way they used to is especially pronounced. They also fully understand what behavior will be accepted as normal and are thus more competent at masking.
While masking may help people with MECFS fit into society and maintain employment, it can be extremely energy-consuming. It can also make their cognitive dysfunction less visible, leading to more medical gaslighting and less understanding of how debilitating brain fog truly is.
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#Brainfog aka #CognitiveDysfunction is one of the most debilitating and frustrating symptoms of Myalgic Encephalomyelitis.
Brainfog is an invisible illness and intellectual disability that affects people with many types of autoimmune diseases, neurological diseases, mental Illness neurodivergence and cancer.
People with MECFS often report brain fog as one of the most difficult symptoms to deal with. It can also be the hardest to reconcile with our identity.
While chronic fatigue and chronic pain may be extremely disabling, most people are able to reconcile these physical symptoms with their identity. But brain fog has a profound effect on not just our functional ability but also our sense of self.
It is important to note that brain fog does not affect WHAT persons with ME think. It affects HOW we think. Your ideas, your values, your creativity, they may be harder to access but they are still there underneath the fog.
I believe it is also essential we question why it is we are so often more uncomfortable with intellectual disability like brain fog than we are with physical disability. Intellectual Ableism including internalized Ableism is powerful and many of us carry it much deeper than we would like to admit. (Myself included!)
Brain fog causes a vast variety of neurological symptoms including:
-Short-term memory loss
-Executive dysfunction
-Auditory and speech processing dysfunction
-Academic difficulty
And so much more.
Brain fog affects every aspect of cognitive abilities. Like fatigue, it is variable, widespread, and difficult to pin down. We expend great effort masking our brain fog that only serves to make it more invisible.
Because of this brain fog in ME / CFS is often highly underestimated and misunderstood. We can lose most of our functioning before anyone even notices. Doctors are not trained to understand these non-focal neurological symptoms and often dismiss or ignore them leading to medical Gaslighting.
So please, take the time to share and learn about brain fog. Because it causes far more disability and suffering than you know.
