Pernicious Anaemia Society

Encephalitis Lethargica and Functional Disorder

Just to give an idea of how wrong the medical profession can get things:

Back in 1917 the 'sleeping sickness' took hold, it was a pandemic that raged for 10 years and killed or disabled 5 million people.

Those that survived the sleeping sickness itself went on to develop the most severe form of Parkinsonianism, some immediately after and others years later.

The symptoms presented themselves in a wide variety of formats, but all were extreme, yet many, many, patients were diagnosed to have 'functional' obsessional and hysterical neuroses - bear in mind here that these patients were, literally, in many cases 'frozen' in their posture and gaze in some of the most unimaginable positions possible.

Even 'oculoyric crises' where gaze is forced into position, some people even upturning eyes so only the whites were showing had this symptom classed purely as functional.

Laterly it was discovered that such patients had substantial damage to a certain area of the brain caused by a virus.

Yet still the medical profession are diagnosing certain illnesses and injuries as 'functional.' They never seem to learn, do they?

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Many are likely to know the film:

Awakenings is a 1990 American drama film based on Oliver Sacks' 1973 memoir of the same title. It tells the true story of British neurologist Oliver Sacks, fictionalized as American Malcolm Sayer (portrayed by Robin Williams), who, in 1969, discovered beneficial effects of the drug L-Dopa. He administered it to catatonic patients who survived the 1917–28 epidemic of encephalitis lethargica. Leonard Lowe (played by Robert De Niro) and the rest of the patients were awakened after decades of catatonia and have to deal with a new life in a new time. The film was nominated for three Academy Awards.


I think the film was romantised somewhat but nevertheless a wonderful film - amazing though to think that some of those symptoms were diagnosed as being 'functional' disorders. Today, the inference is that such symptoms are all in the mind.


I hadn't realised the extent or seriousness of this. My dad served in Egypt during the war, where he contracted amoebic dysentery and was very ill. Afterwards, apparently, he constantly fell asleep standing up any time and anywhere. When he returned, he was sent to many specialists, who couldn't find anything wrong, until one eventually told him it was quite rare and the result of a virus.

He was prescribed amphetamines for the rest of his life to enable him to stay awake during the day and hold down a job,


You can find a few clips on the net of the original patients when they were actually in sleeping sickness phase. It is both bizarre and frightening.

Some actually went hyper instead of sleepy - and they literally died of exhaustion. This is how they learned that people could go no more than 10-14 days without sleep before they died.

But I am drawing anaologies with b12 deficiency here - the majority of people, if they experience just the first or maybe 2nd stage of b12 deficiency, have symptoms that are relatively easily reversible. They have no experience of what comes next or how bizarre it can get. Doctors too have fallen into this trap. The reasons are multiple:

1) Everyone still believes b12 deficiency is a blood condition

2) They believe the blood 'symptoms' come first

3) People who attend doctors with early on-set symptoms are most likely to have those symptoms recognised ie Sore tongue, fatigue, fogs etc - and are likely to get those reversed (even with lousy treatment) Reinforcing the 'easily treated' myth.

4) Doctors are looking for the anaemia and don't realise it can easily be masked.

5) Doctors don't recognise the neuro symptoms as belonging to b12 deficiency particularly in cases where a patient's blood levels are 'normal' or have been normalised.

You end up in a situation where patients who have attended a GP with early on-set symptoms have those symptoms reversed but the illness is still progressing albeit more slowly. And those symptoms or injuries are not recognised as being related to b12 deficiency.

You have patients who don't attend with early on-set symptoms and those symptoms aren't even recorded but attend with later neurological symptoms that aren't recognised by clinicians as being related to a b12 deficiency. Even if they get treatment it is nothing like enough to reverse the symptoms although it will reverse the bloods. Remaining symptoms and continued degeneration will then be put down to anything from being a functional disorder to MS to dementia.

My point relating to the encephalitis situation was, that for years, despite these people being clearly very ill, the symptoms which manifested after they 'recovered' were, in many cases and for quite a few years, being attributed to being 'functional.'

A situation that still exists today when it comes to b12 deficiency.


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