Characterization and the unaware early-stage sufferer

Here is an experiment using Google.

1. First, search for "AIDS is characterized by" in quotes. Or you can try HIV/AIDS.
2. Next, search for "X is characterized by" in quotes. In place of X, put any name for The Pandemic that you want.

There are other ways, but this is good enough to make the point.

Fact and twists

One interesting fact is that everybody's results are different. Google likes to personalize for you, so I can't predict exactly what you will see.

There are twists. For example, AIDS has a leg up in that some results will speak of a somewhat official biomarker; those results are all about the same. You might want to leave that out to compare apples with apples.

Other than that, the twists are not critical. I just want to let you explore.

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Here is what I noticed:

AIDS

AIDS gets "characterized by" its severe sufferers.

You will not get sentences that essentially mean "is characterized by a few or no symptoms for a long period of time", even though that's true for many.

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AIDS is a serious disease and it is correctly characterized by its severe sufferers.

The Pandemic

In contrast, The Pandemic gets "characterized by" — arrantly mischaracterized by — its mild sufferers (when the characterizations manage to avoid complete falsehoods).

You will not get sentences that essentially mean "is characterized by immune abnormalities and opportunistic infections, and affects many parts of the body" even though that's true for many.

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The Pandemic is a serious disease and it is incorrectly mischaracterized by its mild sufferers — at best.

In surrounding text, you will usually not get descriptions that say things like "there are many sufferers who have an extremely large number of symptoms and diseases, millions bedridden and housebound, some fed with tubes, many in darkened rooms and wearing earplugs 24/7, many requiring sheets held over their bodies to avoid touching the skin, and many who died".

Not outliers

Severe sufferers are not outliers or flukes. Characterizing can mean portraying; it is simply inaccurate to portray the mildest sufferers only.

The general public wants to know, "Is this a serious disease?" The mischaracterization says no. It wants to know, "Could my sister have this?" The mischaracterization says yes for too many sisters who don't have it and no for too many who do.

How would you like to have full-blown AIDS then be told every time that your disease "is characterized by blotchy skin"?

Calling it "debilitating blotchy skin" does not improve matters. It's just wrong. (And "debilitate" does not mean what some people think it means.)

Resemblance

I wonder how many sufferers know this:

The typical characterization bears no resemblance to the severe disease.

Yet millions of mild sufferers have gone on to become severe.

Even if we removed the false attributions and replaced the tepid, vague, wave-of-the-hand elements with narrower terms, far too many severe sufferers have far too many other critical facts for any similar list to evoke their presentations.

The typical characterization does not describe the disease

The typical characterization does not describe the disease.

The gestalt is wrong, the facts are wrong, and the descriptions are wrong. Most importantly, it is scientifically inaccurate.

Distinctive

Characterization can mean listing things that are distinctive. To characterize by mild sufferers is to leave out the things that a scientist needs to know in order to inspire good hypotheses and blow bad hypotheses out of the water.

See Samuel's razor (blog label).

It is to tell scientists to not bother studying the disease, because it has no distinctive marks. It is to place in the mind of the reader or listener the wrong facts.

It is to insinuate, "nonspecific and confusing". How many virologists want to spend time repairing cohorts?

Unprincipled

The list of symptoms that follows "is characterized by" in the case of The Pandemic is not principled. It is not even consistent. It's opinion based on selection bias and hearsay at best. "Is characterized by" is NOT based on scientific rigor.

It has everything to do with laziness, selection bias, PR Newswire, media contacts, pliable journals, conflict of interest, astronomical funding discrepancies, sufferers being too sick and too propagandized and too full of misplaced shame to fight for themselves, and raw ugly brutal bigotry. Yeah, fundamental attribution error and all that too.

Urgency

I didn't point this out when I first posted this article, but without severity, there is no urgency.

Why even the good guys?

It's unsurprising that a misopathized disease (with billions of dollars at stake) gets mischaracterized. But why do even the good guys do it?

Even the best scientists often just get the description out of the way in the intro so they can talk about the good stuff — virology or cytokines or whatever. They are not trying to actually list distinctive features, but merely to acquaint the reader. The cohort selection is described in a different part of the paper, and {breadth of facts} does not often figure in early-stage papers.

Even the best reporters typically seem to copy from some denialist definition, perhaps adding one or two things. They never explain multisystem, opportunistic infections, etc. or even point people to {MEICC}. I don't know why.

Now let's talk about mild sufferers

Mild sufferers either have the disease — the underlying pathophysiology — or they do not.

Not knowing for certain whether you have the disease does not mean you are halfway in between having it and not having it. Here:

If a woman is not sure whether she is pregnant, that does not make her half-pregnant. Better hope she has twins, if it does.

You are not half a sufferer. If you are not certain, then the only rational approach is to say that you might have the disease. And if you might have it, then it makes sense to pay attention to the true nature of the disease.

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It's roughly HIV/AIDS-like in many respects and even the mildest and barely-symptomatic sufferer of it still has it (just as with mild HIV/AIDS sufferers).

This has consequences.

Underlying disease and downstream effects

One consequence is that scientists studying downstream effects will not protect you from becoming a severe sufferer.

Analogy: studying oral thrush isn't the same as studying HIV/AIDS.

This is true even if those "is characterized by" symptoms exactly match yours.

Scale

I think a lot of mild sufferers do not know this. A lot are aware, and a lot of Stockholmers don't want to know it, but I guess at millions who would want to know the facts but do not know them. They think the mischaracterizations are not all that bad.

They don't know that they have the same disease as severe sufferers. Maybe even more don't know the severe disease — their own disease in its progressed form — exists.

What do you think?

What would HIV/AIDS do?

If mild HIV/AIDS sufferers had their disease characterized (mischaracterized) by their mild symptoms, they would take to the streets, possibly within 24 hours.

Mild sufferers of that disease know that they have the same disease as severe sufferers.

Conclusion

Severe sufferers characterize the disease in much the same way that severe AIDS sufferers characterize that disease.

Now here is my point for mild sufferers:

When the world tells mild sufferers that they will not get sicker, which is what it does by mischaracterizing the disease using their mild symptoms, they are being mocked and patronized.

Mild sufferers have every reason to ACT UP and get in people's faces and dedicate their lives to advocacy just as mild HIV/AIDS sufferers did.

It worked for AIDS.

Perhaps the movement will make swift progress when massive numbers of currently-unaware mild sufferers internalize the fact that they have or might have the same disease as severe sufferers.

Samuel