Encephalitis lethargica - The forgotten epidemic

Sly Saint

Sly Saint

Senior Member (Voting Rights)
I watched 'Awakenings', the film from the 1990's starring Robert de Nero and Robin Williams.
The film is based on the book 'Awakenings' by Dr Oliver Sacks published in 1973.
(The names in the film have been changed)

'It recounts the life histories of those who had been victims of the 1920s encephalitis lethargica epidemic.[2] Sacks chronicles his efforts in the late 1960s to help these patients at the Beth Abraham Hospital (now Beth Abraham Health Services) in the Bronx, New York. The treatment used the then-new drug L-DOPA.'
wikipedia.

I have been reading up on it generally as it was an excellent film.

I was not aware that around the time of the Spanish flu pandemic that this other epidemic was also taking place.

The forgotten “sleepy sickness” epidemic transformed victims into living statues, speechless and motionless, and scientists still don’t understand it

Just after the end of World War I, a bizarre disease known as the sleepy sickness, or lethargic encephalitis, devastated millions of people across the world and left doctors puzzled for decades afterward. According to some sources, around 1 million of those affected by the disturbing illness died, while many others were transformed into living statues and spent the rest of their lives trapped inside their bodies and locked in institutions, speechless and motionless.

Some of the finest scientific minds of the past 100 years have tried to provide the answers to what exactly caused the horrifying disease, or how to treat it, but, to date, nothing has been definitively proven and the sleepy virus remains one of the biggest medical mysteries of history.
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https://www.thevintagenews.com/2018/02/03/sleepy-sickness/

there are several videos on Youtube of interviews with Dr Sacks and original footage of the patients he treated.

Code: 
https://www.youtube.com/watch?v=4H9ul7pqezs
 
When I read the book I was surprised at how much some of it matched my symptoms. There was a Horizon programme that followed a woman who was sick after flu or a flu like illness. She was lucky enough to be sent to see a doctor who knew about encephalitis lethargic and he diagnosed it, she was treated and recovered.

I wish I could remember the details but if she had developed it as a sporadic case there must be others that are missed.
 
Thank you for highlighting this forgotten epidemic. I find it interesting, as many critics of the ME diagnosis point out that the ME epidemics disappeared after the 1990s and they imply that this shows a psychological cause. Encephalitis lethargica is a good counter example. It swept the world in a pandemic from the late 1910s to the late 1920s. The fatality was large, 10–40%, and survivors often had severe sequelae. Yet, the cause of the illness is unknown and there still are sporadic cases. Hence also a physical illness may mysteriously appear and disappear without any explanation.
 
Mithriel said:
When I read the book I was surprised at how much some of it matched my symptoms. There was a Horizon programme that followed a woman who was sick after flu or a flu like illness. She was lucky enough to be sent to see a doctor who knew about encephalitis lethargic and he diagnosed it, she was treated and recovered.

I wish I could remember the details but if she had developed it as a sporadic case there must be others that are missed.
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from the article I linked to in OP
While many scientists were convinced that encephalitis lethargica was a disease of the past, trapped somewhere between the pages of history, virologist Professor John Oxford thought that the game was not yet over. “I certainly do think that whatever caused it could strike again. And until we know what caused it we won’t be able to prevent it happening again,” he told the BBC.
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Encephalitis lethargica did strike again, just as Professor John Oxford predicted. In 1993 a young girl named Becky Howells was diagnosed with the largely forgotten disease, and it took several years before she recovered. Since then more cases have appeared, and with the help of his colleagues Professor Oxford was able to point out the similarities between the patients.

It was concluded that many of the patients had sore throats before encephalitis lethargica struck, which, according to research conducted by doctors Russell Dale and Andrew Church, was due to a rare form of streptococcus bacteria. They noted that the massive immune reaction to the bacteria caused the immune system of the infected to attack the brain, resulting in brain damage.
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It was concluded that many of the patients had sore throats before encephalitis lethargica struck, which, according to research conducted by doctors Russell Dale and Andrew Church, was due to a rare form of streptococcus bacteria. They noted that the massive immune reaction to the bacteria caused the immune system of the infected to attack the brain, resulting in brain damage.
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The Wikipedia article on EL also implicates an enterovirus as a possible cause of the disease:
Subsequent to publication of this compendium [in 2010], an enterovirus was discovered in encephalitis lethargica cases from the epidemic.[20] In 2012, Oliver Sacks, the author of the book "Awakenings", about institutionalized EL survivors, acknowledged this virus as the probable cause of the disease.[21] Other sources have suggested Streptococcus pneumoniae as a cause.[22]https://en.wikipedia.org/wiki/Encephalitis_lethargica
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2012 article "Evidence for an enterovirus as the cause of encephalitis lethargica" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3448500/
 
Forgotten New Orleans History: The Pandemic That Turned Children Into Monsters (March 2020)

Remember that time a plague turned 5 million adults and children into living corpses/hell spawn all over the world, including New Orleans? No?

That’s because the EL, or encephalitis lethargica, struck during two even larger headline-makers: World War I, and the Spanish Flu pandemic of 1918. (Which should have been named “The Kansas Flu” because that’s where it originated, but the American government hid it with propaganda because that’s how we roll.) Symptoms of EL in some cases included fever, aches, altered behavior, and mania, and that all sucks. But some poor sufferers were struck with something far worse: Paralysis, immobility, kinetic tics, delirium, catatonia, altered speech and “pseudosomnolence.”

The latter was a state wherein victims would sleep abnormally long periods but remember everything happening around them while they did. Some would fall asleep while chewing food or using the bathroom. Family members described witnessing loved ones sleep like the dead for days, eyes open, unresponsive but alive, only to waken suddenly with memories of the household conversations they had “slept” through.
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… EL transformed one third of its young victims into monsters and criminals.
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While today almost no one knows the term “encephalitis lethargica” (staying relevant is even hard for infectious diseases), some may recognize it in pop culture: 1990’s Awakenings, starring Robert De Niro and Robin Willians, showcased EL and the efforts of 1960s researchers to cure it. (Spoiler Alert: They didn’t.)

But the filmmakers definitely left out the parts about post-infectious demon children, because some things really ruin inspiring tales of American compassion
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Content Warning for extreme harm to others / self harm described in some of the young patients: Link
 
Encephalitis Lethargica | Encephalitis International UK phone number.

What is Encephalitis Lethargica?
Encephalitis lethargica (EL), also known as “sleepy sickness,” is a rare and severe form of encephalitis that leads to inflammation of the brain, causing a range of neurological and psychiatric symptoms. While the disease was most famously seen during an epidemic in the early 20th century, sporadic cases still occur today. EL can result in long-term disability or death, and its cause remains unknown, making diagnosis and treatment challenging.

Symptoms of Encephalitis Lethargica
Encephalitis lethargica is known for its wide variety of symptoms, which can often make diagnosis difficult. The disease was historically called “sleepy sickness” due to the profound sleep disturbances it causes. However, the condition presents a much broader range of symptoms, including:

  • Hypersomnolence (excessive sleepiness): Patients may experience extreme tiredness, often falling asleep or freezing during routine activities.
  • Psychiatric changes: Unusual behaviour, irritability, mood changes, and confusion are common. Patients may seem detached or unresponsive.
  • Ophthalmoplegia: Paralysis of the muscles that control eye movement, leading to difficulties in focusing and other visual issues.
  • Movement disorders: Symptoms resembling Parkinson’s disease, such as tremors, stiffness, and slow movements, may appear.
  • Flu-like symptoms: Fever, headaches, and muscle aches are often early signs.
EL is notoriously difficult to diagnose because the symptoms can resemble other conditions such as epilepsy, hysteria, drug intoxication, or psychiatric disorders. Patients are often referred to psychiatrists initially before the neurological cause is recognised.
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Jaybee00 said:
Are we sure that EL isn’t just severe ME/CFS? Why hasn’t there been an big outbreak of EL in recent years?
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There is no similarity as far as I can see. People with ME/CFS do not get this sort of immobility and movement disorder. Also they are psychiatrically entirely normal.

Presumably the illness was a freak reaction to a very specific foreign antigen.
 
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