Expertise

The attitude of many laypeople toward medical science can be summed up as "all you have to do is."

Never mind those silly experts, who actually went to medical school and all.  All you have to do is (choose one or more):

• take vitamins (two favorites are C and D)
• spend more time outdoors
• get more exercise
• get more exposure to sunshine
• drink more water
• stop eating meat
• eat more probiotics
• eat more protein
• eat less protein
• eat less processed food
• eat less sugar
• eat less salt
• eat less, period

Now, mind you, I'm not saying these are bad ideas, with the exception of eating both more and less protein, which are hard to do at the same time.  Most of us could use more exercise and eating less sugar and salt, for example.  It's just that the "all you have to do is" attitude tries to boil down all medical conditions to some easily understandable, easily treated set of causes, and avoids the scary truth that human health is complicated.

Sometimes so complicated that even the experts are stumped.

One of the weirdest examples of that latter phenomenon is a ten-year-long epidemic that happened in the early twentieth century, which directly caused at least a half a million deaths worldwide, and that even so most people haven't heard of.  It's called encephalitis lethargica, but that's really only a description of its symptoms; encephalitis means "brain swelling," and lethargica -- well, that one's obvious.  The first cases in the epidemic (although as you'll see, perhaps not the first cases ever) happened in 1915, and just about all of the patients experienced the same, very odd progression of symptoms:

• first, sore throat, headache, and lethargy
• double vision and an uncontrollable upward motion of the eyes ("oculogyric crisis") 
• upper body weakness, spasms, and neck rigidity
• "sleep inversion" -- the drive to sleep during the day and be awake at night
• temper tantrums, psychosis, and hypersexuality
• "klazomania" -- compulsive screaming
• catatonia

The most commonly effected were males between the ages of five and eighteen, but people of all genders and ages could (and did) get the disease.  The mortality rate was high -- about half of the known victims died within a year of onset -- and of the ones who survived, a great many had neurological problems for the rest of their lives, with many of them exhibiting emotional disturbances and/or Parkinsonism.

The disease is sometimes called Economo's disease, after Austrian neurologist Constantin von Economo,  who along with French pathologist Jean-René Cruchet wrote several papers describing the pathology, symptoms, and treatments (the latter, mostly unsuccessful) for it.

Medical journal photographs from 1920, showing Constantin von Economo (upper left) along with four patients suffering from encephalitis lethargica [Image is in the Public Domain]

To cut to the punch line: we still have no idea what caused it.

Initially, it was thought to have something to do with the Spanish flu, which happened around the same time -- possibly an autoimmune reaction triggered by the flu virus -- but that hypothesis was ruled out because there seems to be no correlation between the disease and previous flu exposure.  Also, the Spanish flu pandemic ended in 1919, while the epidemic of encephalitis lethargica went on until 1926.  (This by itself doesn't eliminate a connection; odd immune reactions occurring long after exposure are relatively common, such as shingles turning up years after contracting, and recovering from, chicken pox.)  The brilliant writer Oliver Sacks, in his book Awakenings, stated that the most likely culprit was an enterovirus, a group that contains the causative pathogen of another multi-symptom disease -- polio -- as well as the Coxsackie viruses, thought to play a role in such autoimmune diseases as type 1 diabetes, myalgic encephalomyelitis, and Sjögren's syndrome.  This contention, however, is still considered speculative at best.

While the 1915-1926 outbreak was the most serious, medical historians have identified other epidemics that may be encephalitis lethargica in Europe -- 1580, 1674, 1712, and 1890.  Because there's no certainty of the cause of the 1915 outbreak, it's hard to be sure these are the same disease, but from the symptoms they sound similar.

The reason I bring all this up today is more than just a chance to talk about a biological oddity.  It's to point out that human physiology, and all the things that can go wrong with it, are complex topics.  Emergent diseases like encephalitis lethargica are scary precisely because they strike suddenly and hard, then can vanish before we have much of a chance to study them (and potentially prevent subsequent outbreaks).

And -- the crucial point -- when they do, we need the best-trained minds in medical science to have every tool at their disposal.

Which, in the United States, we don't.  At the moment, the head of the Department of Health and Human Services is a loony anti-vaxxer who is still trying to connect vaccines to autism despite massive study after massive study showing there's no correlation, much less a causation.  His latest salvo was touting putting cane sugar back into Coke as a major victory in "Making America Healthy Again," despite the fact that it's hard for me to see how anything involving drinking Coke would foster better health.  There's a real concern that because of his policies we may have significant shortages of the flu and COVID-19 vaccines this fall, raising the specter of unchecked epidemics.  Research into cancer treatment -- including an mRNA vaccine that shows great promise in treating deadly pancreatic cancer -- have had their funding pulled.

Oh, but according to RFK Jr., that's not a problem.  "All you have to do" to remain healthy is spend more time outdoors and take vitamins.

This is the man in charge of our health policy today.

Look, I know all too well that there were serious problems with the American medical system even before RFK was appointed.  Overpresciption of antibiotics, opioids, antidepressants, and anxiolytics.  Necessary medical procedures being denied by avaricious insurance companies.  Getting the runaround from GP to specialist and back again, with the result that treatment can be delayed weeks to months.  My wife's a registered nurse; don't think I'm unaware of the issues.

But.  If I were to develop a serious medical condition, I'd still want trained experts working on it.  Why on earth would I not?  How does it make sense to doubt medical expertise, when we trust expertise of just about every other sort?  No one gets on an airplane and says, "To hell with training, I'm okay if the plane is piloted by a plumber who has never flown before."  When your house's wiring needs work, you don't say, "I'm fine hiring an accountant to do the job.  He'll do just as well as an actual electrician."  People of all professions work long and hard to acquire their skills and knowledge, and by and large, we trust that they know what they're doing within their given fields.

So why have we been told that medical researchers are somehow the only ones who are lying to us?  And why do so many believe it?

I wish I knew the answer to that.  Maybe it's just because with something as complex and potentially scary as our health, we tend to flail around for something, anything, to make it simpler and more reassuring.  And it's a sad truth of life that sometimes the answers evade even the experts.  The outbreak of encephalitis lethargica is just one of many examples.  But when the next mystery disease strikes -- or even some of the familiar ones -- we want the best shot we have to respond quickly and effectively.

And for that, we need trained doctors and researchers, not anti-science ideologues.

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