“Folks have forgotten what life is all about,” Robert De Niro’s character says within the movie Awakenings after being revived from the shut-down state he had been in for 30 years. “They’ve forgotten what it’s to be alive.”
Based mostly on a true story informed by Dr Oliver Sacks, Awakenings focuses with beautiful element on the experiences of some extraordinary individuals affected by a illness referred to as encephalitis lethargica, or the “sleepy illness”.
But removed from being a rarity, this illness affected 1,000,000 individuals worldwide throughout and after the primary world struggle. Then it vanished and has remained a thriller for the previous century. The query that has by no means been answered is: what brought about it?
The illness was first described by a neurologist in Vienna in 1917. It was famous that the preliminary signs had been much like these of flu, however that is the place the similarities ended. Over the following few weeks, some could be unable to sleep in any respect, whereas others could be so drowsy they may very well be woken for less than a jiffy to eat.
About half died on this early part, however those that survived had been much more perplexing. After recovering, usually returning to work, many began to note stiffness, slowness of their actions and even that their eyes would get caught in sure positions.
Sadly, this slowly progressed. And plenty of had been left – like De Niro’s character – in a frozen state, unable to talk or transfer.
However that wasn’t all. Many would develop monotonous or slurred speech. Some had adjustments to their temper, perceptions and character.
In a examine my colleagues and I performed, we even got here throughout 4 sufferers who developed kleptomania (compulsive stealing) as a part of their sickness.
What might have brought about this?
Discovering the origin of a illness is not as easy because it sounds. HIV as a explanation for AIDS or HPV inflicting cervical most cancers had been each lengthy journeys and had been in no way apparent early on. It is the identical with encephalitis lethargica.
On condition that it began out of the blue after which went away, some have steered it is perhaps associated to an an infection. Spanish flu occurred across the similar time, though the primary circumstances of encephalitis lethargica had been earlier.
We’ve not discovered any influenza virus within the brains of people that had been affected, so it does not fairly slot in a easy manner.
To take a look at what is perhaps happening, we spent hours studying by way of the meticulously preserved data of greater than 600 sufferers who had encephalitis lethargica.
We discovered that solely 32% of them had had something even remotely like flu within the 12 months earlier than their sickness began. And fewer than 1% had an affected member of the family. So the flu an infection story is not very convincing – no less than by itself.
What about one thing within the atmosphere? 1917 was a reasonably eventful 12 months – to say the least – with the primary world struggle involving an unlimited mobilisation of individuals, arms and provides. Maybe it was some new chemical getting used. But our examine discovered no hyperlink to individuals who labored with specific substances.
Extra not too long ago, a new idea for encephalitis lethargica has been proposed. The concept is that there is perhaps an autoimmune course of concerned – that’s, the physique’s pure defence mechanisms may need turned on itself and attacked the mind.
This occurs elsewhere within the physique. A response in opposition to cells within the pancreas causes sort 1 diabetes, whereas antibodies to cells within the thyroid gland can set off Graves’ illness.
Within the mind, the outcomes will be devastating, and in recent times, now we have recognised that a number of sclerosis additionally outcomes from an issue with the immune system.
One thing referred to as autoimmune encephalitis is the place sure antibodies assault nerve cells within the mind. We discovered that just about half of the sufferers recognized with encephalitis lethargica may need had autoimmune encephalitis, although it did not match the sample for any of the categories we recognise immediately.
How might this clarify a illness that arose out of nowhere and brought about such a variety of signs? Some sufferers discovered that their actions and ideas had been massively slowed down. Others hallucinated, had weird delusions and even appeared to lose their conscience.
That is the place we might need to return to the thought of an an infection, both flu or one thing else.
Some autoimmune situations will be triggered by an an infection of some variety, which can look a bit like one thing the physique is acquainted with. It is a good disguise for the invading bug, however as soon as your physique has recognised it, there is a threat it turns the physique’s defences on itself.
Does this all actually matter? Is it value fixing a pandemic the place the final survivor died 20 years in the past? Effectively, sadly, encephalitis lethargica wasn’t the first neurological epidemic of its variety and – if we do not crack it – we can’t be ready for the following.
Jonathan Rogers, Wellcome Belief Scientific Fellow in Psychiatry, UCL
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