Living with Fatigue and a Society That Does Not Care

Today is my birthday. Obviously, it marks a date that is easy to remember for me. And I remember exactly how I felt on this day last year, on Mar 17, 2024.

Concentrating, and just being myself in general, required an immense effort. Simple day-to-day activities, like personal hygiene or cooking a meal, became enormous projects. More complex tasks, especially those requiring any kind of non-trivial planning, were so overwhelming I could not even think about them anymore without getting extremely stressed. Sensory input, especially smells and sounds, felt painful and induced piercing migraine-like headaches, tremors, and repeated absences, where I would just stare into the middle distance for a few seconds until something or someone would snap me out of my trance again. I lost my sense of balance, constantly swaying as if slightly drunk. All of this made leaving the house a mortifying experience, the outside world a domain of violent sensory chaos. Personal interactions, teaching, or public engagements, on which I have been thriving my whole life, turned into pure torture. Any form of intimacy, emotional or physical, became utterly impossible. The slightest physical or mental effort would throw me into a post-exertional malaise (PEM) that could last for days on end. But the worst of it all was that the whole thing seemed never-ending, and it got a little bit worse every single day. Paranoia, severe anxiety, and a long-lasting clinical depression ensued. This is what happens to your mind when you feel like the juice is slowly but inexorably squeezed out of you and you feel your will to live fading away.

Now, one year later, I am finally well enough again to write about this. And I need to get it out of my system. Also for those of us who can't tell their tale because they are much worse off than me. I still struggle with a heavy fatigue, life still feels like treading through molasses, and the sensory overload has not yet gone away. Smoke, dust, paint, hard liquor, and certain perfumes still make me want to vomit. But the tremors are less and I don't regularly zone out anymore (at least as far as I can tell). I drive the car to the local shops again (but no further than that). I can even enjoy a glass of beer or wine every once in a while, which I compensate by histamine-uptake-blockers, an early bedtime, and a good night's sleep. This weekend, I've been to a dinner party for the first time since 2023. In general, I've learned to pace myself. I can exercise a little bit on the home trainer, even do some planks again. (Essential, if you have a bad back, which got a lot worse this year!) I am still very far from able to work or party like I used to. I want to be able to climb mountains again! I need to lose some of the weight I gained through immobility. But life is livable again and the days of depression are less frequent. A little bit of joy and color have returned, even though I can still get frustrated. At least now it's about the slow pace of progress, not the total absence of it.

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What I've just described is a rather mild course of what people, somewhat imprecisely, call LongCOVID. In fact, this is just one of the many long-term complications COVID can and does cause. And it is also not exclusive to COVID. You can (and always could) get it from any bacterial or viral infection, and even from post-traumatic stress disorder. And there have always been people suffering from it, most of them worse and longer-term than me. But its frequency has increased manifold the last five years. And, no, it's not the vaccinations that are to blame. It's the SARS-CoV2 virus. There is plenty of evidence for this.

My symptoms indicate that I am falling under two particular categories of LongCOVID. First, I have something called myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS for short. This is just a name for a set of symptoms like the brain fog, fatigue, sensory overload, and so on, that I just described above. Its causes are not well known, and probably diverse. The second category I fall under is called mast-cell activation syndrome or MCAS. It is a chronic inflammation (particularly of your capillary blood vessels and your autonomic nervous system) caused by an upregulation of a class of peripheral immune cells called mast cells. It causes a constant histamine storm in your body, a permanently disregulated stress response. I got new allergies from it, against dust and nuts, that I did not have before. Again, nobody knows what's causing MCAS: it could be residual virus in my body, a derailed and hyperactive immune system, or an autoimmune response triggered by the original infection.

In my case, the proximal trigger for all of this was an infection with respiratory syncytial virus or RSV, that started as an innocuous cough at the end of October 2023. Usually, with someone healthy and at my age, this should only cause a mild cold. But when the cough persisted and got so bad I could not sleep and sometimes passed out from the coughing fits, I went to see our local doctor who told me this was a viral bronchitis that would take weeks to pass. This came as a bit of a shock. Also because I developed a laryingitis that made me regularly (and rather seriously) choke on my food. Cortisone helped with the coughing and the sleeping. After two-and-a-half months of this acute infection, the cough and choking went away, but so did my brain and my energy. This is when the long-term symptoms started. It's been almost one-and-a-half-years by now. Which is still on the short end of the scale. We have a friend who's had this kind of thing for 25 years, with much worse symptoms than me. I'll say it again: I am among the lucky ones.

My suspicion is that the severity of the RSV infection was caused by a previous bout of COVID in 2021. Already then, I had some longer-term complications. Slight fatigue and a persistent cough for a month. But nothing notable, compared to what I've experienced the last 15 months. Because the long-term effects of COVID are often subtle, and can take years to develop, it is difficult to establish any kind of robust causal evidence for what has really happened in any particular case.

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I am one of 80'000 confirmed cases of LongCOVID in Austria, a country of 9 million people. There will be many more that are either misdiagnosed or have even milder symptoms than me, which they don't deem worthy of medical attention. It is reasonable to assume, therefore, that 1-2% of the population of this country suffer from some kind of LongCOVID. Extrapolated to the world that is 80-160 million people. This is how many of us are impaired by the long-term consequences of COVID.

I'd call this the worst ongoing health crisis in a long, long time... But, sadly, not many people recognize the severity of our situation. Quite the contrary: most of us seem determined to ignore the very existence of the problem. Maybe, if we close our eyes to it, it will simply go away? And those that suffer conveniently disappear from view, locked into dark rooms, no longer a visible part of our productivity-crazed society.

Most of the people with MCAS and ME/CFS have much worse symptoms that I do. Many are misdiagnosed as allergic, burnt out, depressed, or whatnot, and are not getting appropriate medical treatment. Most patients are socially much less privileged than me. I have a house to live in, reside in a good neighborhood, have a caring partner, family, and friends, have no immediate financial worries (even though I do live precariously as a freelancer), my doctor is not a COVID denier or minimizer, I have an excellent psychotherapist, and the health system in Austria is public and reasonably functional (well, kind of).

It pains me to think of how many of these millions of sick people out there are struggling, are disappearing from view, are dying in utter destitution and isolation, without anybody wanting to notice or help. I am not able to work a full time job at the moment. I cannot teach full-day workshops or courses. I can only work so many hours a day on my book. But most patients are not able to work at all. Some don't even get out of bed anymore. They not only need better (and accessible) medical treatment but also pensions from the state to keep them out of misery. This, of course, is unaffordable from the point of view of our current politicians and economists. And this is one reason why the whole situation is deliberately swept under the rug. It is happening in Austria, and pretty much anywhere else. What kind of society throws millions under the bus for the sake of efficiently going ... where exactly ... in a rush? We've truly lost our bearings. This much was clear to me before. But it has become even clearer through my personal experience with this disease. How ME/CFS patients are treated is simply inhumane.

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Treatment is obviously still a problem. And not only because of politics. All the drugs we have are only helping to suppress symptoms, but there is no real cure yet. For those who are interested: these are the medications that helped me.

An opiate-receptor inhibitor called naltrexone (LDN, i.e., administered in low doses, and initially accompanied by memantin) helps tremendously with the brain fog (and gives you weird nocturnal visions and funky vivid dreams as an added bonus). Antihistamines worked against the inflammation for a while, but then made me so tired and drowsy by their own effects that their application became pointless. I'm now taking a mast-cell inhibitor called pentatop instead, which seems to work reasonably well (at least it is not causing any side effects). But this drug is not covered by the local health system so I have to buy it privately, which is not cheap. Low-dosage aripipirazol (LDA) is supposed to help with the sensory overload, but made me paranoid to a degree where I started to argue with a parking meter. It may work for other people though. Daosin helps to prevent histamine uptake when I sin (by drinking wine or eating too much chocolate, for example). A low-histamine diet is gruesome and joyless but effective. And when I teach, or plan go to some social event, I just pop (against my doctor's advice) some ibuprofen, which clears up my head wonderfully for a few hours (and even seems to suppress PEM), but can lead to serious addiction and unwanted side effects if taken too frequently.

In any case, remember that this is not medical advice. I am not a doctor. I'm just giving you pointers you may bring up with your doctor if they do not have experience with this type of condition.

Because getting the right care was not trivial for me. It was quite a journey, and not easy, given my limited energy reserves. Waiting in a public doctor's office for hours is not exactly joy for anyone, but definitely not if you are suffering from fatigue... Trying out new treatments, and struggling to find the right kind of doctor, is a natural part of suffering from a disease that only recently has achieved any kind of public attention. But it is frustrating to see how slowly things are changing. A bit more effort by the health sector and the politicians behind it would be greatly appreciated. But things are already much better than the way ME/CFS patients were treated before COVID: they were disbelieved, sent from doctor to doctor, called lazy and accused of making things up, of something being wrong in their head. All of this is truly shameful.

I think that we really could expect services to improve more rapidly, and to be covered by the public health system (here in Europe). But acknowledging a health crisis of this dimension does not seem to be a high priority for the authorities, anywhere in the world. It's so much easier to ignore the whole problem and wrongly declare COVID to be over. Especially if you live in la-la-land, like the COVID-denying, anti-vaxxer lunatics that have taken over U.S. health care.

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But I'll write about the deluded politics of this another day. This is, as I said, a personal post. Yet, politics still comes into it, in a different way. Imagine you've seen yourself, all your life, as an independent agent who is trying to survive outside the constraints of our mainstream academic and political institutions and views of the day. This requires tons of energy just to keep yourself afloat. Now imagine you are convinced that we are headed into the greatest civilizational crash humanity has ever seen. Then imagine you're hit by a condition like this, at this moment in history, which not only makes it extremely difficult to put in the effort to survive, but also to think your way clearly through the situation the world is in today. This makes me feel extremely vulnerable, which is not something I am used to. But this kind of softening up may actually be a good thing for the kind of guy that I am. And this is not the only positive effect that has come from all this trouble.

I've also been forced to slow down at a time when the whole world seems to rush, increasingly rapidly, towards some civilizational cliff edge. This experience is both extremely frightening, and disorienting, but also strangely encouraging and liberating at the same time. I simply cannot keep up and must let go. And once I've managed to do this, I realized: I'm still alive. I'm still here. I'm quite fine, actually. And all the others around me haven't really gone anywhere worthwhile either. This kind of deceleration has been a really good thing. And it was highly necessary, in many ways. For example, I am no longer habitually using recreational drugs to relax, but had to learn how to chill out on my own (sober) terms. I'm also more mindful and clear about my priorities. And I am present in my own life. No longer rushing to be somewhere else. Who knows where. I'm not sure I'd have managed to do all this without the challenges I've experienced the past one-and-a-half years.

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If you got this far in this post, you may ask: Why do I write this down? Why do I want you to know all this? Why should it be interesting to anyone?

Well, first of all, I want to be acknowledged. I am still doing my work, I am still me, I am still here, despite all this. When you see what I do, factor in the circumstances under which I and others like me are living their lives and just how insane this hyperaccelerated society we've created is for so many of us. We really need to slow the hell down. One thing that I've clearly noticed the past year is that I never enjoyed the rush, not even when I was full of excitement and energy. And I've always rushed myself to keep up. Even when I was fine, I burnt more energy than I actually had. I will never do this again. From now on, I decide to live my life at my own pace. Maybe we should admire people who manage to do this, rather than those who are pathologically productive all of the time. I find this whole cult of productivity utterly disgusting.

The second reason I want to be heard is to raise awareness of those that have ME/CFS (or other forms of LongCOVID) but cannot speak up because they are too weak. They are suffering. They are dying. They are often young, and female, and full of potential. What pain this disease is causing. What sadness it evokes in me. How do these patients deserve our indifference? What are we afraid of that keeps us from acknowledging their existence? They must be helped. They may not be visible but they are there. Stop pretending everything is fine. It is not.

The incidence of pretty much every medical condition has increased in recent years. This is the legacy of COVID. We are turning into a sick society. Ignoring the problem is still all too easy, but won't make it go away. I know it is scary to face the truth: it could be you who is getting ME/CFS or MCAS any time to catch a cold. Only by preventing the spread of these triggering infections (especially COVID) can we lower the risk.

There are realistic solutions, which would make the situation better. We need clean air in public spaces. We need to grow up, be less egotistical, and learn again to protect each other. And we need to pressure politicians into doing something about the crisis that is LongCOVID. It will cost us. But ignoring it will cost us even more.

That's what a health system is for: not to make profit, but to react to exactly this kind of crisis when it arises, and to protect us from loosing our time on this earth to this terrible disease. Remember: it can happen to anyone, any time. I never thought it would happen to me.

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Stay healthy, protect others, and keep masking up in public places.
And stop ignoring reality, please.