From academic success to cognitive disability

Every time the disability of ME/CFS is portrayed as people who were once physically active in life (often athletes) who can no longer reach the physical performance that they used to have. In severe cases, it's housebound or bedbound patients who "struggle to take a shower" or "can't go out for a walk".

I have struggled with this view for a long time, because that is not the problem i have, at all. To be clear, my physical disability (for a young person in their 20s) is astounding, and i am indeed housebound. It is a severe limitation. But compared to another problem i have, it is a mild inconvenience at most. It is like comparing the earth to a supermassive black hole. Both are big celestial objects (compared to a tiny human), but the scale is on a completely different level.

I am talking about cognitive impairment, usually referred to as "brain fog". It has completely annihilated my life in ways that very few people can even begin to conceptualize (certainly not doctors). I became severely ill in high school (after a nasty and very long lung infection) and went from being the best in my class, everyone telling me i was gifted, people and teachers telling me that they thought i would become an aerospace engineer, to becoming the worst in my class. No matter how hard i tried, there was no way i could understand anything.

I have only gotten worse since then and i cannot even do basic math now. I cannot even attempt to read or study anything without incredible willpower, and if i do, i will have devastating PEM and forget everything that i have learned. And that's if i stop early. If i try even harder, the damage will be permanent. I literally cannot study or learn or read anything (that isn't a short message like a tweet or a short forum post) and it has been this way for over a decade now. If i had a billion years, literally a billion years, at my disposal to get a math degree (or any degree really), I am confident I would not be able to. And I have never gotten better with time, only worse.

Neurologists have of course told me that i do not have cognitive impairment and i could do anything if i wanted to. But that's another topic.

I think i have already gotten my point across, but i will make what i think is a great example to further illustrate it. Stephen Hawking was far more physically disabled than any ME patient. But he still had a very fulfilling life. It is impossible for me to have anything even remotely close to a fulfilling life, even though i can move all my limbs just fine and even walk for some distance. Really, I could still go anywhere with a wheelchair or otherwise very simple physical accommodations that every disabled person typically gets.

So my question is: why is nobody talking about this? Clearly something doesn't add up. I must be an extremely rare outlier, even though i perfectly fit ME/CFS criteria. Even looking at the recent Long Covid symptom studies it is very obvious that's my illness. Not to mention i have seen an extreme amount of doctors and so many tests, if i had anything else i would have found out by now. I even sequenced my entire genome and looked for rare genetic illness - nothing.

A lot of people complain about "brain fog" but clearly it's nothing like what i have. If it were, the illness would be painted in a drastically different light.

From academic success to cognitive disability - Is there actually anybody with ME that fits this description? If so, where are these people and why are they silent? Why are their voices not heard? Why are their stories not told? Surely for an org like MEAction it would be more important than doing online yoga sessions and promoting the Perrin Technique?

My logical conclusion is that these patients do not exist, or are at least extremely rare.

 

Ironically, I am too cognitively shattered today to write a good reply.

You might be interested in advocacy from Wilhelmina Jenkins. She has done an excellent job highlighting the cognitive effects of this disease. Most recently in this article:

 

My opinion is that physical capabilities (or lack of) are, relatively, an easier and more relatable subject for people to write about. Additionally, there must be the factor that those who are more disabled by cognitive dysfunction find it harder to write about and otherwise explain how disabling that they find it, I know this is definitely the case for me.

I am constantly in awe, and a little bit jealous, of ME patients who are able to write eloquent, long form articles; while I'm capable of more than many other patients, from experience I just don't have the same ability with the written word, the ability to express complex ideas coherently. My life has been about breaking everything down into the smallest chunks of information possible so that I can then process each chunk before moving onto the next, something I feel that I've got pretty good at but it is also a very limiting way to go through life.

 

I know that it has been mentioned a handful of times, but if it was so disabling the patients would be making a lot more noise. Like, it would be a popular topic of discussion at least as much as the PACE trial.

I have stalked long covid communities for a while (and of course seen countless ME patients) and i do sometimes see people complain that they "feel stupid", but if there's one thing ME unblinded treatment studies have taught me, is to not take things at face value. While it's true that some people complain about brain fog, their story never looks anything like mine. They are always continuing their academic journey, just at a slower pace - sometimes not even that. Or they get better after a few months. Usually both. The amount of people I've seen complaining about brain fog while getting their degree and being puzzled at me, asking me why I'm not getting a degree myself, is staggering.

I have seen a very small number of patients that complained of severe cognitive impairment but they often became ill way past their prime (often in their 50s) and never had any substantial academic success to show for it, despite swearing that they were totally brilliant prior to becoming ill.

I have never heard an ME doctor saying that the patients lives were devastated, annihilated even, by the cognitive impairment. I think many years ago one physician said something vaguely similar but, again, that's the point. Why are the mentions of this topic so sporadic and underwhelming?

Ron Davis is dealing with at least 20 very severe patients and i have never heard him saying they are devastated that they cannot continue studying or reading (or more generally intellectual work). I specifically remember one of those 20 patients was making a living programming apps while she was bedbound.

I don't want to sound rude, forgive me, but this whole story doesn't add up. It feels like the patients who got cured with valgancyclovir or rituximab. If there is anybody with a story that looks like mine i would love to see it. I'm not saying these patients don't exist at all, there are a lot of people on earth, but they must be extremely rare.

 

It was cognitive dysfunction that ended any chance at a career for me. It is cognitive dysfunction that stops me from advocating, writing articles and my book. Physical dysfunction is bad, I am nearly totally housebound, and for twenty years I was in extreme pain from widespread muscle issues. Yet the cognitive issues affect everything I do. While doctors think they understand my fatigue (and then show they have no clue), they don't grasp my cognitive issues at all.

 

The opposite in my view. The cognitive dysfunction stops us from discussing it most of the time if I use my own experience. Right now I can only engage because I just got up from a nap.

 

I was a PhD candidate. I reached the point where talking was very painful due to the cognitive demand, I could not read, and I could not write, and I could not count to three. Nearly always doctors ignore the cognitive impairment issues, they literally have no idea what to make of it. We might like to run a survey on this question.

 

This is how I feel. Yes, physically disabled, but the cognitive problems are huge. Just writing this now is very hard work. I have been vocal on the forum about my problems with visual processing. Right now just looking at this screen is hurting my brain. I can't read more than a paragraph or two at a time. I know there are others who would class themselves as moderately affected — about where I am — but don't have any of these issues, and can quite happily sit at the computer all day. We are all different, but I agree that these cognitive/neuro issues are often downplayed. As an ex academic, it really hurts.

 

Hello @Hubris, thank you for this thread. I got sick in 2009, and in the early years I wrote advocacy letters to my government about ME. My letters were cogent, polished, and elegant. I have lost a lot of brain cells since then. Reading is very difficult, thinking is also hard, and doing math definitely will give me a crash (such as doing my yearly taxes). For my disability insurance I was sent for a neuro-psychological assessment and it was found that I indeed had cognitive deficits, such as concentration and the ability to solve puzzles. These exams take a long time (usually a full day) and are quite costly, and its results can be subject to interpretation.

I would also say that my cognition is severely impaired, and I am limited in the amount and intensity of cognitive stimulus I can have. I think that "brain fog" terminology is of huge disservice to our community.

 

I gained a Bachelor's degree and a First Class Masters degree in the early days of ME. Now I am worse affected both physically and mentally - no way could I do it now.

I used to play Countdown every day, and used to collect firewood and look after and sell plants. Again, this was in the early days/years of ME. I can't do it now.

I'm 69 years old and beginning to wonder how much is due to age. I've had ME for 27 years.

 

I studied at an Ivy League institution and worked in dynamic, demanding professional spheres. The cognitive limitations accompanying this disease are not only disabling, but dehumanizing. On most days, I no longer recognize myself. I imagine that most patients feel the same, but are so impaired, they cannot formulate the prose necessary to convey it. I often feel in a stupor, and it’s only in the rare moments of lucidity that I truly sense what I’ve lost. It’s unimaginably painful.

 

Loss of 'brain power' is what has made ME/CFS for me a 'miserable disease' - as much as I hate the loss of physical function (outdoors was where I was always happiest) the physical loss I could cope with as a practical issue, but having a head full of cotton wool instead of properly working white and grey matter has been the real killer, and even with four decades to adjust it's the thing I still 'mourn'.

There's a couple of reasons why perhaps the cognitive disablement of ME/CFS is less featured, even in advocacy, than the purely physical aspects. First there is the simple fact of practicality - it is possible to recruit help and assistance for physical disability and that is well recognised in the public sphere.

Secondly and in opposition to the first, there is far less public appreciation of the loss cognitive function, it is something that is treated with humour when it happens with age (silly old grandma, senior moments etc) and unlike those with physical prowess - athletes, dancers etc, who are applauded, there is a level of public distrust of the 'athletically brainy'; a bit of levelling down on the IQ scale is simply not seen as the same order of tragedy as is loss of physical ability or indeed even physical attractiveness.

It would be an interesting( though perhaps not feasible) bit of research to see whether ME/CFS has an absolute impairment on cognitive function - meaning that wherever the patient starts pre illness, for the individual there is a proportionate loss of capacity, or whether there is a cognitive floor which no one goes under on an average day, notwithstanding of course inevitable exacerbations. If the latter, then only a proportion of PwME may experience a profound loss of capacity - notably those who not only who had prior high function, but who had built that functioning into their lived experience and personal identity.

 

I made some small contributions to what later became the AV1 video codec, widely used to compress video by companies such as YouTube and Netflix. I worked on MSA LUNAR, a device that can help locate firefighters in danger. When I was 17 I built high-performance FM and TV antennas from designs I found online. My ability to code isn't gone--early this year I wrote a Wordle solver in Rust--but limited mental energy means it's not a regular hobby like it used to be.

 

Wow thanks for sharing this @BrightCandle. I'm so sorry you're not able to work at the level you used to, I can definitely relate to that. My achievements definitely weren't comparable but that feeling of knowing what you used to be capable of and aren't anymore is very familiar (as I'm sure it is to most people here).

 

Just some thoughts.

Loss of physical capacity means you cannot do stuff, its about what you can do as a person. However loss of cognitive capacity does not just mean you lose cognitive function, it can impact on your identity, its about who you are as a person.

I agree with an earlier comment that brain fog is not nearly a good enough description. I have cognitive capacity holes, things I either cannot do or do very badly, likely visual spacial reasoning, or numeracy. These days my memory loss is becoming severe, but my reasoning is intact. Its not dementia. (For lack of a better name I call it not-dementia.) I had bouts of this early on, where memory went but reasoning remained. Its weird to experience. Now its a constant thing. I will probably have had at least mild ME or a precursor for 55 years next year. What do we really know about long term consequences of ME? I do wonder if this is an NO thing, which is not only a vasodilator but also needed for memory formation.

 

After struggling for many years with ME/CFS with a gradual downward progression, it was severe cognitive problems that made me finally quit my job. I had no other choice. I would sit at my desk reading the same sentence over and over again but could not comprehend it. People would talk to me, but I could not comprehend what they were saying. I would find myself totally confused and overwhelmed when walking through a building I was not familiar with. I found it difficult (and embarrassing) ordering food in the cafeteria. These are just a few examples. I had a QEEG done by a neurophysiologist who found that my brain was 90% impaired with slow wave activity. She told me that she often sees this pattern in chronic fatigue syndrome patients. She had written up her findings in order to have them published. No one was interested, and her efforts to get it published were not successful. Totally agree with Sean's statement:
"It is the most disabling, limiting, and humiliating symptom." And yet, we look so well. I continue to struggle with cognitive problems to this day, even in my greatly reduced life.