What Chronic Fatigue is not
On how to resume any level of activity once chronic fatigue sets in
Artistic depiction of ME/CFS symptoms by a woman who has the condition, showing a woman slumped over with exhaustion. Jem Yoshioka from Wellington, New Zealand. February 27, 2009
It has now been two years since I stopped publishing anything. I had COVID19 in April 2020, I still managed to squeeze out a few essays and a book, and then long COVID took over, becoming the central governing element in my life. It still is. Recently, I have been trying to resume some level of activity, mostly because I refuse to accept the conditions of a disabled and entirely retired person. The cost of being one is too high in the US for me. Given my circumstances (which I share with dozens of millions here), it is a level of surrender of one’s basic human rights to corporations and government agencies that I consider incompatible with life itself. I don’t subscribe to the imperative of “life at any cost”.
Resuming an activity that we quit more than a year before is always tricky. We may have completely recovered or overcome the obstacle that made it impossible to continue whatever it is we're trying to resume, or we may not. In the latter case, we are writing from the standpoint of someone still inside the problem. So here I am, trying to resume my publishing activity on my writing platforms, or my research on the specific outlets for scholarly work.
I believe the last pieces I've published were around 2021, when all the negative factors shaping the course of my long covid were exacerbated. On top of the increased pain, fatigue, and new hyper inflammatory reactions, the two clinics I used then - one general practice, one pain clinic - created serious problems for me, including malpractice, medical neglect, medical abandonment, and billing fraud. One of them also refused to hand me my own medical records, something highly illegal. All of that greatly contributed to aggravating my condition even more. The administrative staff in the health industry know it, and they do it quite rationally to wear down the victim until she finally agrees to pay the ransom, because that is what it is. This is exhausting to anyone, but highly disruptive and pathogenic when maliciously perpetrated against someone suffering from chronic fatigue and chronic pain.
I've been planning this comeback for quite a while. I made a list of titles and drafted a few paragraphs for articles, essays, and even for a longer monograph project. However, I don't seem to disentangle myself from the confusion and the labyrinth that these two years have turned into. It is all chaos, and I badly miss order. For this reason, I felt that I needed to start from the start, and pursue topics according to the chronological order in which they became prominent in some material context. That was a bad idea. A very bad idea. First, because even charting the line of causation, as well as the line of associated driving factors, is a herculean task. In these two years, from micro to macro events, too much has happened, and too much of it is absolutely not linear.
I tried. I really did. But while I am painstakingly working on charting events, creating trees of causation, I am not writing about them. That is the textbook definition of analysis paralysis. And the longer we take to publish something, anything, the worse it gets.
What if I just gave up elegance and linearity and started from any place? Since I seem unable to unsee the grand scheme, or the connection between a damn scam and the rapid societal and institutional decay in late stage capitalism at the heart of the Empire, anything works, right? Not really, but close enough.
The problem is choosing that random place for one reason: nothing is random in our heads. What I can do is to start from anything in the present, no matter its relative importance in the saga.
I have been increasingly interested in understanding what exactly is chronic fatigue. Like you, probably, I thought chronic fatigue meant being chronically very tired. It wasn’t hard to imagine: everyone gets tired once in a while. But that assumption is wrong, and there is not enough empirical research to point us in the direction of discriminating (pathological) “fatigue” from “tiredness”. The medical literature is consensual with respect to our shared ignorance concerning both chronic pain and chronic fatigue.
We may have a little more evidence on chronic pain than on chronic fatigue. In fact, we know that chronic pain is neurologically different from other pain conditions.
For chronic fatigue, not even that. We have the subjective accounts of patients. But for each one of us the experience is different.
For some people, chronic fatigue does look like being very tired, all the time. For others, me included, it is not.
Yesterday, I described to a friend feeling like a wind-up toy. Once the winding is loose, the toy just stops in the middle of anything it is doing, turning into a statue. It’s almost sudden, unlike a battery run device that may get slower and less functional as the battery is weaker.
The battery metaphor is not useless, though. When exhaustion sets in, I know there is no backup battery to keep me going. There is no movement. For me, chronic fatigue involves a type of sudden exhaustion that is impossible to fight. I have caught myself “recovering” from this type of exhaustion while standing motionless, eyes opened, apparently staring at nothing. I have no idea how long I had been there. Sometimes it feels like waking up in an unknown place, even if it is my work, my home, or some other very familiar place. That sensation is very uncomfortable, not to mention embarrassing.
But where does fatigue come from? What activities or bodily phenomena can lead to such a profound exhaustion?
The number one answer from popular health outlets involves post exertional malaise. Apparently, most people who suffer from chronic fatigue will manifest intense post exertional malaise. Here, too, it was quite sudden for me: it was a morning deadlift session in August, last year, and a scary, intense state of pain and exhaustion set in. I still tried to push through, but in a few minutes it was all exploding, there was a blinding pain, and a feeling not unlike the one we feel when anesthesia is kicking in. I felt like I was going to pass out. Instead, I opened the door and started walking fast on the street, where to, I don’t know. It was as if I was trying to run away from whatever was causing all that. Since then, I haven’t been able to resume a training schedule.
But post exertional malaise is not a form of tiredness resulting from exercise. Everyone is supposed to feel tired after exercising. This is different. There is a profound discomfort in post-exertional malaise.
What about post mental exertion issues? For me, mental exertion may be more taxing than physical exertion. Right now, for the first time in decades, I am not training. I tried to adopt a rehab protocol, eventually moving back to the home gym, but nothing worked so far. I am always interrupted by an aggravation of the pain, and I’m back to the drawing board on that front.
Exhaustion from mental exertion is also sudden, and scary. I might be reading a text when suddenly the words cease to form sentences. At first, I thought I had gotten distracted and looked away from the page, returning to the wrong point in it. Nope: I was in the right place, yet the words didn’t form anything understandable. For an intellectual worker like me, that is terrifying.
If I am reading music and playing it, suddenly the notes don’t make sense and don’t form a musical phrase anymore. This is quite confusing and at first, I again think it’s the result of getting distracted. I go back to the top of the page and start trying to read the music, to no avail. The writing doesn’t translate into meaningful sound phrases anymore. It’s the end of that practice session.
The confusion and the notorious “brain fog” are associated with the image of mustard sauce inside my skull.
It took me a while to realize that part of the general discomfort I felt was related to the perception of time. From the micro to the macro level, I feel that everything is happening too fast “outside”, and too slow “inside”.
Last week was my friend’s daughter’s first birthday. To me, they had just had a baby.
I wake up at 6:38AM and suddenly it’s 2PM.
Today is Friday? But wasn’t yesterday a Monday?
There is too much stuff happening inside, and it’s all happening very slowly.
But brain fog or not, circadian deceleration or not, I still think as I used to. I employ the proper methods to inquiries. I present logical, linear accounts of things.
To resume a regular publishing activity as I did before presents one big problem: it’s the “before”. I think like I used to, I establish a timeline to deliver any manuscript, and non-fictional writing about current events must follow the timeline of the phenomena I am highlighting. All of that would be fine, and actually worked great before. But I’m not the person I was before. For this reason, every time I sit down to continue writing something, anything, I am overwhelmed by an imaginary backlog. It is imaginary, I know it, and that doesn’t make it any less overwhelming because I am the one imagining it, and giving it authority.
This is how I decided to write this article today. I am not here to write a review on what we know about chronic fatigue, or highlight what we don’t know. It is very hard to resist doing just that, because it is my default setting as a scientist. However, I am just making the most trivial point: chronic fatigue is not equal to being very tired all the time. That’s all.
And now that we cleared that up, maybe we can resume that convo we started long ago in this newsletter.
References and further reading:
Missailidis D, Annesley SJ, Fisher PR. Pathological Mechanisms Underlying Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Diagnostics (Basel). 2019 Jul 20;9(3):80. doi: 10.3390/diagnostics9030080. PMID: 31330791; PMCID: PMC6787592.
Sapra A, Bhandari P. Chronic Fatigue Syndrome. [Updated 2022 Jul 2]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK557676/
Komaroff, Anthony L., and W. Ian Lipkin. "ME/CFS and Long COVID share similar symptoms and biological abnormalities: road map to the literature." Frontiers in Medicine 10 (2023): 1187163.
Davis, Hannah E., Lisa McCorkell, Julia Moore Vogel, and Eric J. Topol. "Long COVID: major findings, mechanisms and recommendations." Nature Reviews Microbiology 21, no. 3 (2023): 133-146.
Bateman, Lucinda, Alison C. Bested, Hector F. Bonilla, Bela V. Chheda, Lily Chu, Jennifer M. Curtin, Tania T. Dempsey et al. "Myalgic encephalomyelitis/chronic fatigue syndrome: essentials of diagnosis and management." In Mayo clinic proceedings, vol. 96, no. 11, pp. 2861-2878. Elsevier, 2021.