Substack Making sense of ME/CFS Melvin Ramsay, the Royal Free Hospital outbreak, and the evolving understanding of ME. Myalgic encephalomyelitis, 1955-1990 - by K. Johnstone (substack.com)
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.
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.