Myalgic encephalomyelitis, 1955-1990 - K. Johnstone

Sly Saint

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Making sense of ME/CFS


Melvin Ramsay, the Royal Free Hospital outbreak, and the evolving understanding of ME.

the victims of ME should no longer have to dread the verdict of, ‘All your tests are normal. Therefore there is nothing wrong with you’.” - Melvin Ramsay, 1986.

In July 1955 a nurse and a resident doctor at London’s Royal Free Hospital fell ill with a mystery illness. The illness spread rapidly among the medical staff, particularly the nurses, and within ten days the hospital was forced to close its doors. Over the next few months the illness would strike 287 medical staff, and just 12 patients. Most of those who fell ill were women, but this was to be expected - the hospital had a policy of preferentially hiring women doctors, so most of its medical staff were female.

[...]

Looking back over old medical records, the doctors realised that the outbreak had not been an isolated event. They found records of several patients who had been treated at the hospital in the months leading up to the outbreak, who had the same unusual symptoms. A similar, though smaller outbreak had taken place in Cumbria, in the north-east of England, several months before the Royal Free outbreak. And, at around the same time the mystery illness was ripping through the London hospital, a cluster of similar cases were recorded in Durham, in the north-west.

The doctors searched the scientific literature for further reports of similar illnesses, and they were amazed to discover that similar outbreaks had occurred all over the world, with epidemics recorded in:

[...]


Myalgic encephalomyelitis, 1955-1990 - by K. Johnstone (substack.com)
 
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That's a really interesting account. Worth clicking through to read the whole thing. I'm interested to know if others who have read the primary sources agree with it all.

It notes that the name ME was applied to the initial Royal Free virus, and that the people who had ongoing symptoms were diagnosed with 'chronic ME'. But that Ramsay came to realise that people were getting this chronic ME after a range of infections, and the 'chronic' part of the name eventually dropped away.
 
It is something I have increasingly come to see as relevant. The acute infective illness with apparent neurological features at the Royal Free actually has nothing to do with ME/CFS other than that it was one of many apparent triggering events. And as I mentioned in my Qeios piece, that means that McEvedy and Beard's account has nothing to do with ME/CFS being psychological or not, it was about the origin of the RFH neurological features.
 
I'm interested to know if others who have read the primary sources agree with it all.
There are some errors I spotted on a very quick skim. It was called "epidemic neuromyasthenia" not "epidemic neurasthenis". It's "Epstein-Barr" not "Eppstein-Barr". Also the author says that "coxsackie normally causes a fever which passes after a few days": Coxsackie refers not to a single virus but two groups (A and B) of viruses and the symptoms are not limited to fever - for instance among the Coxsackie A viruses are those that cause hand, foot and mouth disease.
 
Extract:

Ramsay wrote his 1986 book ‘Myalgic encephalomyelitis and postviral fatigue states: the saga of the Royal Free disease’ to help other doctors understand the illness and give the best possible care to patients. Although there was no cure, Ramsay emphasised that receiving the correct diagnosis was of great benefit to patients, who had often been told for years that they suffered from depression or neurosis. In his experience, simply being told that the illness had a name and was not ‘all in the mind’ gave patients reassurance and hope. He wrote that patients should be advised to adapt to a slower pace of life and to get plenty of rest after any exertion. He recommended that patients attend local support groups, where people shared their experiences of living with ME, and where information about the disease was provided. In the pre-internet world, support groups must have been a lifeline for people living with a disease that most of the world did not believe existed.

 
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