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Thinking Clearly about “Long COVID” Confusion

Thinking Clearly about “Long COVID” Confusion September 20, 2021

This is a rebuttal of Michael Fumento’s “The Myth of ‘Long COVID'” at The American Spectator. Per his author bio, he’s a guy who studies the phenomenon of epidemic hysterias; I absolutely agree that there exist some documented cases of localized symptom-outbreaks that fit that definition, so I don’t categorically dismiss the possibility.

I further agree that there is a cultural aspect to disease-naming and disease-categorizing.

Finally, as this lengthy essay will affirm, I agree that there is no doubt a significant amount of imprecision in the current understanding of what is and is not the syndrome called, for now, Long COVID.  (For those who are wondering: I don’t have Long COVID.  Just don’t.  If you came here for a personal story of that disease, you’re out of luck.)

However, I think Fumento makes a number of very serious errors in his analysis, and I’d like to address some of the more egregious ones. Let’s start with his demographic diagnosis, and then we’ll work through his other major arguments and finish up by refuting his main conclusion.

Complaint #1: It’s mostly women who get this.

Um, okay?  It’s mostly men who get gout.  The fact that a disease or disorder predominantly (or even exclusively) affects one sex or the other does not disprove its existence.

Complaint #2: It’s mostly women in their 40’s and 50’s who get this.

Right. So, many diseases are specifically described by the age group primarily affected.  That’s just a very, very common aspect to the diagnostic process.  As a result, unfortunately this means atypical patients often get overlooked and struggle to get a diagnosis.  But in terms of aiding in the initial evaluation of a patient and deciding where to begin the diagnostic process, age- and gender-related rules of thumb can be helpful.

Complaint #3: It’s mostly white women in their 40’s and 50’s who get this.

Okay, so it’s possible that there’s a genetic component to this, such that certain ethnic groups are more prone to the disease than others? But I doubt it.  Could be, I’m not strictly ruling it out.

I expect, though, the racial disparity is more related to the part where Black women, even wealthy, healthy, highly-educated Black women, are struggling just to not be ignored while they drop dead of complications of childbirth, and frankly a generalized but poorly-defined sense of “I feel like crap” is probably lower on the priority list.  When you have long, long experience of being ignored by your medical team even over life-and-death matters?  You begin to realize there’s just no point in bringing up the small stuff.

Complaint #4: It’s mostly rich white women in their 40’s and 50’s who get this.

And I’ll tell you why: Poor people expect to feel like crap and then they die.  Sorry, that’s just how American medicine works. It’s wrong, it’s a travesty, but it’s been categorically affirmed by all my friends who don’t meet the rich-n-white description.

Wealthy white women, in contrast, experience in our culture a powerful, persistent pressure to be fit, trim, and energetic.  I’m not going “oh poor us”; I’m just telling you a thing that exists and which drives healthcare-seeking behaviors.

If you are poor-and-exhausted, you drag yourself through whatever you have to do to cover your basic expenses, and then you go home and watch TV, and rich people tell you how unmotivated you are and how your poverty is all your fault.  If you are rich-and-exhausted, you don’t get a pass to act like the great unwashed.  You’d better fix that problem, because you are a rich lady, and your job is to be fit, trim, and energetic.

So absolutely, any disease whose primary symptom is exhaustion, but which isn’t at present easily diagnosed by lab work, is going to be most persistently pursued by the people who have the time, money, and motivation to keep on hounding their physicians for answers.

Complaint #5 There aren’t any tests for it.

It’s not just women, by the way, who get this treatment. Anyone from the 80’s around?  Remember when ulcers were all about your stress level?  Typically men, but also women, were told they just needed to relax.  Your friggin’ stomach was bleeding, but yeah, it was just your Type A personality. After all, lots of people get stomach upsets when they are stressed out, so if you have a bleeding ulcer, you must just be really, really, really stressed.

And I mean, your stomach bleeding is a kinda stressful thing, I imagine.  So the correlation was there, right?

Anyway, now we can treat ulcers with antibiotics, so I guess men (“men”) are just not the headcases they used to be.

Or maybe it’s that we develop diagnostic laboratory work because we have a difficult-to-diagnose disease phenomenon for which no current test exists, and it takes trial and error and often years, decades, centuries, or millennia before a reliable medical test can be developed.  That’s just how medicine works.

Complaint #6 There’s no agreement on what “long” really means.

This is valid but misguided.  I absolutely agree that we need to refine our understanding, but that in no way means the disease, or diseases, does not exist.

Story time, by way of example, I have a lifetime history of “long” respiratory infections:

  • As in an infant and toddler, I was constantly getting pneumonia.  After ruling out cystic fibrosis, my pediatrician put me on prophylactic antibiotics so I could attend preschool without becoming deathly ill.  That’s one kind of “long”.
  • I grew out of that tendency, but in early elementary school, and again in my late 20’s and early 30’s when I was having children (possible explanation for the latter: pregnancy can suppress your immune system), I was prone to getting bronchitis, and it would last about a month.  That’s another kind of “long”, compared to the average cold or flu.
  • In my early 30’s, after a shorter cold-type illness, I developed exercise-induced asthma, which went away after a couple years (and which responded to treatment during those couple of years, so it was fine).  Yet a different type of “long”.
  • In my mid 30’s, after a rather annoying bout of bronchitis, I developed the Incurable Cough of Deathexactly like the one on TV, except no fake blood in my hands and no getting written out of the show by the end of the season.  It lasted for years, freaked people out (but only people with a sense of humor, because it presented primarily if I’d laugh at someone’s joke), but was otherwise harmless.  Then I stumbled on the effective treatment and it went away promptly.   So that was yet another kind of “long.”

Interestingly, by the way, as long as I stay on NAC (thank you Canada for existing) I have no further problems with respiratory infections, I catch them all but clear them extremely quickly. So . . . there’s another kind of long: 4o-some years of being prone to a thing, and then you figure out what works, and suddenly you’re fine.  (And hopefully the FDA doesn’t do that thing where they hand over monopoly power and price-rigging on the thing that makes you fine.  Yes, there’s a reason the FDA is suddenly very, very interested in a previously boring, generic, naturally-occurring substance.)

So, that long (ha) personal story not just to vent spleen, but to say that Fumento is correct, the “long” in Long COVID is currently being used to lump together a wide variety of types of lingering illness.  There are no doubt several different disease processes that need to be parsed out, and probably some commonalities as well.

None of that negates the existence of a long-lasting COVID and/or post-COVID illness.  It just tells us that hello, COVID itself is still a toddler.

I do, however, completely agree that we need to distinguish, at a minimum, cases where the acute infection is just taking a long time to clear up; cases of lasting heart or lung damage that is easily connected to the acute disease process; cases of persistence of other well-known infection-symptoms like loss of taste or smell; cases of extreme fatigue, autonomic dysfunction and other symptoms that are commonly  associated with post-viral syndromes.

I’m honestly puzzled that anyone who is familiar with recovery from respiratory viruses is not able to easily parse these out into broad categories.  This is not new.  The virus is new, but post-viral illnesses and injuries are ancient and well-documented.

Complaint #7 It’s All Long COVID Now

Abso-freaking-lutely.  Some of the people who think they have Long COVID probably don’t.  Malingerers happen.  Mistaken diagnoses happen.  It’s a thing.

You know what else is a thing: Comorbidities.  You could have Long COVID and migraines, or an ulcer, or a tendency towards spraining your ankles, and maybe the two are connected, or maybe they aren’t.  Over time, some of the “Long COVID” symptoms will probably be ruled out.  In that whittling-down process, the medical establishment will probably overshoot, and hopefully a later corrective will occur.

(Anyone from the ’90’s remember how that went with heart attacks?)

We are currently in the stage where people are comparing notes and attempting to identify patterns.  It is normal for people to err on the side of mentioning a symptom they think is related but in the end maybe is not.  Sometimes erectile dysfunction is just erectile dysfunction.  Probably not so much among those rich white women in their 40’s and 50’s though.

And yes, absolutely, given that Long COVID is a hot topic, there are no doubt many people who simply don’t feel well, don’t know why, and have grabbed at this one as a possible explanation.

Complaint #8 People on the internet are jerks.

I agree with this.

Complaint # 9 Depression is a brain disease.

I have a relapsing and remitting disorder of my autonomic nervous system (final dx tbd), and it can cause some weirdly amusing symptoms.

–> For a couple months one winter, I would wake up every morning at 4AM with a runny nose.  At first I thought it was allergies — maybe my bedding was dusty — but of course one doesn’t suddenly get allergic to one’s pillow at 4AM and it clears right up at five and you go back to sleep with no further problem.

The obvious answer is that I was experiencing some slight wonkiness in the normal set of biological changes that happens in the early hours just before waking (ahem “before” in this case).  Not allergies, not a cold, definitely not psychosomatic because I was perfectly happily asleep until the runny nose woke me up.   Started out of nowhere one day, happened every early-morning for a couple months, and then went away.  Sometimes a runny nose is almost, but not quite, just a runny nose.

Now it is entirely possible to experience autonomic symptoms that are strictly related to peripheral neuropathy (in fact, diabetic peripheral neuropathy is a major cause), but let’s be real: Probably, if you’re a person who experiences a wide variety of relapsing and remitting symptoms of dysautonomia across multiple body systems, there’s some brain involvement in this disease process? So call it a ‘brain disorder’ if you like.

Post-COVID syndromes appear to often, not always, have brain involvement (and this will probably become a distinguishing feature in parsing out different types of post-COVID illness).

Depression is also a brain disorder.

So is Alzheimer’s.

So is Multiple Sclerosis.

Ditto brain tumors, strokes . . . all kinds of stuff.

Your brain has many, many different ways it can, for many different reasons, not work how it ought.

Furthermore, depression can be comorbid with other brain disorders in a variety of ways:

  • You can be prone to depression and also, completely separately, come down with a brain illness or injury.
  • Your brain illness or injury can cause depression as one of its symptoms, because it affects some part of your brain that impacts your mood.
  • You can develop situational depression because having a brain injury or illness is not always the fun and inspiring experience people say it is.
  • You can just be exhausted from your illness, and it looks like depression but it isn’t; actually you are a friggin’ superhero because every damn thing you do is a thousand times more difficult than it otherwise would be, and if you didn’t have the drive and determination that you do, you really would just lay there until you starved to death.

Depression can look like fatigue? Yes. But also, fatigue can look like depression.

Years ago when I first consulted my GP about what turned out to be a chronic illness, he came in to the exam room and asked me what was going on, and here’s what I had to tell him: “I feel like crap.”

That was it.

At the time, I’d been this guy’s patient for about a decade, and the spouse and in-laws had been with his practice since the late ’70’s.  He knew what I was like.   He knew that “I feel like crap” was a pretty good indicator that something was wrong.  So when the routine lab work came up with nothing, and follow-up with assorted specialists came up with nothing, we were stuck, but also: Something is not right here.  We determined we’d just have to wait and see, and if it was going to get worse, we’d end up with more data.

But depression was never on the menu, not because I never get depressed, but because the evidence of my life was the total opposite of a person with depression.

I feel like crap was a major problem because I was undeniably active and engaged and exhibiting zest-for-life and all that.  Otherwise I woulda just watched TV at night and chalked up long miserable days to getting old and having a crappy job (counter evidence: love my job), like other people end up doing because their doctor tells them that if they can’t find proof in the lab work, it must be stress or depression or some other vague thing outside the doctor’s specialty and therefore not a real problem.

(Fat people, of course, are often much quicker to diagnose.  Lots of doctors will tell you: It is literally impossible to have any other disease until you lose fifty pounds. You don’t even get to be depressed, that’s reserved for people who are thinner than the doctor.)

And again: It’s entirely likely that some fraction of the COVID “long-haulers” are misdiagnosing themselves, and depression is the source of their fatigue and lack of mental clarity.

But it’s just silly to therefore conclude that post-COVID syndromes are strictly a mental health problem.  It would be more astounding if a sometimes-fatal illness didn’t cause a long term disease process in a portion of the survivors.

That’s just the reality of being infected with a potentially lethal virus.  It can hurt you.

File:Glen Coe Rainbow.jpg

Time for another rainbow.  Photo of a rainbow at the base of a mountainous valley (Glen Coe) with light on the hillside and clouds obscuring the peaks, taken by © User:Colin, via Wikimedia Commons, CC 4.0.

 


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