Myalgic encephalomyelitis, 1955-1990 - K. Johnstone

Sly Saint · Jul 23, 2024

Substack
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.

Those doctors who didn’t fall ill meticulously recorded the progress of the illness. It began with flu-like symptoms, headaches, and mood changes. After a few days the patients developed sore throat, nausea and loss of appetite, vomiting and diarrhea, dizziness and pain. In the second or third week the illness worsened and new, neurological symptoms appeared: blurred vision, vertigo, tinnitus, involuntary eye movements, tingling or loss of sensation, muscle spasms and muscle weakness. The weakness could be so extreme that the patient became partly paralysed. Two people lost the ability to swallow, and had to be tube fed.

The muscle weakness and partial paralysis led the doctors to suspect that they might be dealing with polio, the devastating viral disease that left children paralysed and needing an iron lung to breathe for them. But tests of the patients’ spinal fluid failed to turn up any sign of poliovirus. The doctors were fairly sure the illness was caused by some type of virus because it spread rapidly from patient to patient, and they calculated that it had an incubation period of six to seven days. But, although they did every test they could think of, no virus was ever detected.

The hospital remained closed for a little over two months. No deaths were directly attributed to the illness, and most patients eventually recovered. The hospital reopened and life seemed to return to normal. But this was not the end of the story.

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:

• Iceland in 1948 and 1949

• Adelaide, Australia from 1949 to 1951

• New York State in 1950

• Middlesex Hospital in London in 1952

• Coventry, England in 1953, and

• Durban, South Africa in 1955.

It was a medical mystery. Similar outbreaks had taken place all over the world, with the same perplexing symptoms turning up in patients on different continents. In each case the illness spread rapidly from person to person like a virus, but no sign of a virus was ever found.

As months passed, the most shocking aspect of the illness began to reveal itself: the victims didn’t die, but some of them didn’t recover, either. The majority did return to full health, but an unlucky few remained so ill that they became permanently disabled.

Dr Melvin Ramsay was the head of the Royal Free Hospital’s Infectious Diseases department at the time of the Royal Free outbreak. He developed an interest in the mystery illness which would stay with him for the rest of his life. Through the 1950s and 1960s Ramsay sought out cases of the illness, and compared notes with other doctors who were studying and treating it. He exchanged letters with doctors in the US, Australia and New Zealand. Many of those who developed the illness were doctors themselves, both in the UK and internationally.

In the years following the Royal Free outbreak the illness went through several names. It was called ‘Royal Free Disease’, then ‘encephalomyelitis’ then, ‘benign myalgic encephalomyelitis’, which was the name that stuck for a while. Melvin Ramsay fought for the word ‘benign’ to be removed. The disease was called ‘benign’ because the patients didn’t die, but, as Ramsay pointed out, it devastated people’s lives, leaving them unable to work or care for their families. The ‘benign’ was eventually removed.

‘Myalgic encephalomyelitis’ was (and still is) a controversial term. ‘Myalgic’ refers to the muscle pain experienced by those living with the illness - no-one has a problem with that part. ‘Encephalomyelitis’, on the other hand, means inflammation of the brain and spinal cord. Ramsay and his fellow doctors deduced that encephalomyelitis was present based on the neurological symptoms, and on the fact that the illness was associated with an infection. But at that time there was no experimental evidence of inflammation in the brain or spinal cord.

Early on, the name myalgic encephalomyelitis (or ME) referred to the acute, short-term infection that people developed, which lasted for a few weeks or a few months. Once it became clear that the illness had a chronic, long-term form, Ramsay called this chronic version of the illness ‘chronic ME’. However, since Ramsay’s time the terminology has changed somewhat. Today, when people talk about ME they always mean a chronic illness. In fact all modern definitions of ME require that the patient has been ill for at least three months.

Chronic ME was serious and disabling. Those with the mildest form of the illness could work, at least part-time, but many patients couldn’t work at all, and some couldn’t even care for themselves. Many were housebound or even bedbound. Nevertheless people didn’t die of it - unless you counted the rather high number of people who died by suicide.

Chronic ME had an unusually large number of symptoms, affecting various different parts of the body. Nevertheless, after years of carefully examining patients, comparing notes with other doctors, and poring over scientific reports, Ramsay found that it did follow a pattern which a knowledgeable clinician could recognise.

The key distinguishing feature of the illness was abnormal muscle fatigue following exercise. Ramsay wrote: “Following even a minimal degree of physical exertion there could be delays of between three and five days before muscle power was restored.”

Other muscle problems included: muscle pain, muscle spasming and twitching, and muscle weakness. Patients typically also had poor circulation, which showed itself as the patient having cold hands and feet, being pale or ashen, and being sensitive to temperature changes.

Then there were neurological problems, including:

• Cognitive problems such as word-finding difficulties

• Sensitivity to noise.

• Symptoms which suggested problems with the autonomic nervous system: frequent urination, excessive sweating, and orthostatic tachycardia

• “Emotional lability” or unusual mood changes. Ramsay mentioned “bouts of uncontrollable weeping” in normally stoic patients.

It was a feature of the disease that the symptoms fluctuated over the course of a day. (Many doctors simply couldn’t handle this - they felt that if a symptom existed at all, it should be there all the time, and always at the same level of severity. Then as now, many doctors believe that if a patient says their symptoms come and go it’s a sign that the patient is either a hypochondriac or simply lying. Ramsay was a rare doctor who was not afraid of complexity. He listened carefully to his patients’ descriptions of their experiences, and he saw that, despite the complexity, they painted remarkably similar pictures of what they were going through. And so he did perhaps the most powerful thing a doctor can do for patients suffering with a poorly-understood illness: he believed them.)
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Myalgic encephalomyelitis, 1955-1990 - by K. Johnstone (substack.com)

Hutan · Jul 24, 2024

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.

Jonathan Edwards · Jul 24, 2024

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.

Nightsong · Jul 24, 2024

I'm interested to know if others who have read the primary sources agree with it all.
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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.

Dolphin · Jul 25, 2024

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.

https://twitter.com/user/status/1816539111932506515

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Myalgic encephalomyelitis, 1955-1990 - K. Johnstone

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