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Evidence for enterovirus as the cause of encephalitis lethargica

Hip

Senior Member
Messages
17,824
In the period from 1917 to 1926, a condition called encephalitis lethargica was rampant throughout the world (nearly five million people were affected, a third of whom died).

The first acute phase symptoms of encephalitis lethargica were: double vision (diplopia), deep drowsiness, and sometimes mild fever. Around one third of encephalitis lethargica sufferers died during this acute phase, usually of respiratory failure.

Autopsies discovered that patients suffered from an inflammation confined to a small region at the base of the brain.

For those who survived the first phase, the second phase was characterized by a loss of concentration and loss of interest in life, in a manner which resembled chronic fatigue syndrome. Many encephalitis lethargica patients presented with sore throats, and suffered from sleep inversion (circadian rhythm disruption where the patient is active at night and sleep during the day), similar to the circadian rhythm disruption found in ME/CFS.

But during this second period, a process of neurodegeneration would take place (which could occur within days, or take up to 30 years), which led to post-encephalitic parkinsonism. Ref: 1

No recurrence of this epidemic has appeared, though isolated sporadic cases of encephalitis lethargica do occur.



The cause of encephalitis lethargica is still uncertain, though there was some speculation that the 1918 influenzavirus pandemic was the culprit (but in fact the encephalitis lethargica outbreak began two years before the 1918 influenzavirus pandemic,1 and furthermore, new research shows no evidence of influenza RNA in the archived brain material of the original encephalitis lethargica patients).

But recently, a 2012 study suggested that enterovirus (in particular coxsackievirus B) might in fact be the causal agent of encephalitis lethargica:

Evidence for an enterovirus as the cause of encephalitis lethargica

And one case of a patient with fatal coxsackievirus B4 meningoencephalitis resulted in symptoms suggestive of encephalitis lethargica.

Coxsackievirus B is of course a virus associated with ME/CFS, a disease which shows some similarity to encephalitis lethargica.
 
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Hip

Senior Member
Messages
17,824
A loss of interest in life would be the exact opposite of ME/CFS

I am not so sure: healthy people who see ME/CFS patients often think that they are avoiding life, and thus it can appear from the outside that there is a loss of interest in life. People have said to me that I should try to rebuild my interest in life, without realizing that there are numerous symptoms that keep ME/CFS patients away from the activities of life — and this in spite of the fact that most patients have a very strong desire to be healthy again and to enjoy life.

We know that this avoidance in ME/CFS is due to reasons such as brain fog, fatigue, sound sensitivity or emotional hypersensitivity, emotional flatness, which make life seem too fast, exhausting, noisy, chaotic, stressful and passionless to face. And may additionally be due to PEM physical limitations.

That phrase "loss of interest in life" was picked up from one article that I was reading, and may be just the author's way of summing up a lot of symptoms in one simple phrase. That article is quite good, in that it clearly delineates the three phases of encephalitis lethargica.


Other descriptions of encephalitis lethargica symptoms include this one:
The most common prodromal symptoms are headache, slight sore throat, chilly sensations, general weakness, and mild gastrointestinal disturbances.

The most prominent signs are lethargy, sleepiness, or stupor both at the onset and through at least the early stages of the disease. This lethargy may be more apparent than real, however, as the patient is conscious of passing stimuli and once aroused immediately becomes alert and sensible (“false sleep” or “pseudo somnolence”). In contrast, the patient may exhibit insomnia, alone or alternating with somnolence. Sometimes patients exhibit delirium.

Paralyses or pareses, most often associated with the cranial nerves, result in oculomotor abnormalities (eg, diplopia, ptosis, accommodation paralysis, sluggish pupils, strabismus, nystagmus), facial paralyses, masticatory paralyses, dysphagia, or dysarthria, and occasionally there are paralyses of the trunk or limbs. Some patients develop parkinsonian rigidity, catatonic stupor, and catalepsy.

Other patients show hyperkinetic phenomena, including myoclonias, “fascicular twitchings,” epileptiform convulsions, choreic movements, and maniacal states. Some patients experience sensory disturbances, including pain (eg, headache, facial, muscular). Isolated cases of a cerebellar type of ataxia have been reported.
 
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Thomas

Senior Member
Messages
325
Location
Canada
I have a vague memory of Dr. Hyde telling me back when we first met in 2013, that he thought that ME resembled a very very mild version of EL. Not that ME is mild - but compared to how EL was portrayed in the movie Awakenings it would appear that way in certain respects.

Hyde is also a big proponent of ME being caused by enteroviruses.

Interesting (and frustrating) stuff.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I wonder if I would have survived my initial infection if I had not received antibiotics.
 

Forbin

Senior Member
Messages
966
I'm pretty sure that encephalitis lethargica was the condition affecting patients in the film "Awakenings." The film was based on the true story of neurologist Oliver Sacks' reversal of an apparently catatonic state in long term EL patients. The temporary reversal followed treatment with L-Dopa.

It's a very good, though inevitably sad, film - with an arc somewhat similar to the earlier fictional film "Charlie" with Cliff Robertson. In the end, though, it is the neurologist (Robin Williams) who is the central character left to extract meaning from the events.

 

Izola

Senior Member
Messages
495
A loss of interest in life would be the exact opposite of ME/CFS - there is no resemblance there.

Perhaps the "loss of interest in life" derives from the point of view of the on looker. Without other input, my "behavior" would have appeared to be that of one who is disinterested in life. However, I am, and was, really just trying to stay alive.

My ME arose from an Encephalitis. I could feel the awful sensations of my brain swelling. I wanted to rip off my face and gouge out my eyes to alleviate the horrifying discomfort of the alien sensations, too many to describe.

My "fog" was so deep the air around me appeared to be a dense fog, my sight and hearing from a deep place inside the earth with a tunnel view of the world outside and the sound from the surface heard as if I were hearing from deep inside a well.

Overall, I have had relapsing, remitting features with, over all, a major relapsing trend of almost 3 decades.

Well over a dozen doctors missed the encephalitis. I guess the accompanying "fatigue" symptom directed their attention to CDC's then non-disease diagnosis of "cfs."

My encephalitis type symptoms eventually emerged as ME/cfs.

Thank you, Hip, for bringing this all to light. Thank you Valintiyn, for your always insightful commentary. iz