It is nearly 40 years since the first diagnostic criteria for myalgic encephalomyelitis (ME) was published by physician Melvin Ramsay in 1986 in his book, 'Postviral Fatigue Syndrome: The Saga of Royal Free Disease'.

Born in Lancashire to Scottish parents, Dr Ramsay went on to attend to secondary school in Stonehaven in Aberdeenshire before studying medicine at Aberdeen University in the 1920s.

His book was named after a mysterious outbreak which occurred in 1955 in London's Royal Free Hospital, where Dr Ramsay was a consultant in infectious disease medicine.

READ MORE: 

Nearly 300 staff - including doctors, nurses, auxiliaries and administrative staff - were sickened between July and November, leading the NHS hospital to close temporarily to new admissions.

Onset was associated with an upper respiratory infection, sore throat, or gastrointestinal disturbances, followed by a wide range of symptoms including headache, limb pain, nausea, vertigo, vomiting, tinnitus, muscle weakness, double vision, swollen lymph nodes, sensory impairment, and sometimes severe muscle aches or twitching.

More than 250 of those affected were hospitalised.

While some recovered within a few days or weeks, others went on to experience "unusual fatigue" for years, some were only ever able to return to work part-time, one patient died by suicide, and a few experienced long-term neurological defects such as partial paralysis.

A follow-up study published 65 years later identified three categories of patient: those who had recovered completely, or nearly completely; those who appeared to have recovered but continued to experience relapses; and those who remained incapacitated, with little or no recovery.

Initially dubbed 'Royal Free Disease', it was later described as benign myalgic encephalomyelitis to reflect the fact that, while it appeared to be non-fatal, the symptoms were characteristic with a disorder causing inflammation and damage to the nervous system.

It was accepted by the World Health Organisation as an "organic illness" within neurology as of 1960.

The Royal Free Hospital in LondonThe Royal Free Hospital in London (Image: Archant)

However, attempts to find a cause and cure were derailed by a controversial paper published in 1970 by two psychiatrists, Colin McEvedy and Alfred William Beard, who hypothesised that the entire outbreak and subsequent disability experienced by the Royal Free patients was actually a form of "mass hysteria".

Their argument was rooted in the absence of physical evidence for disease (such as abnormal blood tests) and the fact that more women were affected than men.

Although their paper sparked a backlash criticising flaws in the research, the message that this was a psychosomatic ailment told hold both in the public consciousness and the medical profession, and has profoundly coloured attitudes to what was ultimately renamed ME - or chronic fatigue syndrome - for the next 50 years.

By the time Dr Ramsay published his book in 1986, setting out the first diagnostic criteria for ME (extreme muscle fatigue even after minimal exertion; cerebral dysfunction; and circulatory impairment), it was all too often maligned as "yuppie flu".

Dr Melvin Ramsay (right) Dr Melvin Ramsay (right) (Image: MEResearchUK)

A co-founder of the ME Association charity, Dr Ramsay was deeply angered and upset by the lack of empathy shown to ME patients, for whom he remained a lifelong advocate up until his death - aged 89 - in 1990.

If he were alive today, he would no doubt be saddened by the dispiriting lack of progress.

Severe ME Awareness Day, marked each year on August 8, comes just days after a 57-year-old Dutch woman who had been living in Scotland for more than 30 years travelled to the Netherlands to end her life by voluntary euthanasia as a result of the "unbearable suffering" of ME.

Edina Slayter-Engelsman, from Aberdeenshire, had been a keen hillwalker, cyclist and swimmer before she was diagnosed with the condition in February 2020.

It left her bedbound, unable to even shower or use the bathroom, and so sensitive to any kind of sensory stimulation that reading a book or watching the television would be harmful.

Following a year of medical, psychological, and psychiatric assessment in Amsterdam, Ms Slayter-Engelsman - a married mother-of-two - was deemed to meet the Dutch euthanasia criteria of "unbearable suffering with no prospect of improvement".

She died after a doctor administered a lethal injection.

 

 

Speaking to the BBC prior to her death, Ms Slayter-Engelsman compared the experience of ME to being trapped in a spider's web, saying: "Every time you try to get out, the web just gets tighter and tighter around you".

This echoes the experience of other severe ME patients who have described feeling as though they exist on an ever-shrinking "energy envelope": that they have a limited, safe level of exertion available to them, but if they go beyond that and "crash", the amount of energy available to expend in future will be even smaller.

An ongoing inquest into the case of 27-year-old Maeve Boothby-O'Neill has also highlighted the dearth of support - and continued prejudice - faced by severe ME patients.

Ms Boothby-O'Neill, from Devon, died at home in October 2021 as a result of starvation.

Her symptoms were so severe that she struggled to sit up, chew, or suck, and had become severely malnourished.

Maeve Boothby-O'Neill, who died in October 2021, after ME symptoms she had experienced since she was a teenager became acuteMaeve Boothby-O'Neill, who died in October 2021, after ME symptoms she had experienced since she was a teenager became acute (Image: Family Handout/PA Wire)

She was admitted to hospital three times, beginning in March 2021, including on one occasion where she was treated on a ward for eating disorders.

Dr David Strain, one of the UK's leading experts on ME, told the inquest that the NHS still lacks any specialist wards for severe ME patients and that the condition remains "tremendously stigmatised", mainly due to the lack of any diagnostic test.

"Even today there are people who have been through the historic medical schools that didn’t recognise this as a physical disease," said Dr Strain.

While ME seems to be triggered by an abnormal response to a viral infection, it remains unclear exactly what the mechanism is and why some patients recover while others develop severe and lasting symptoms.

Scientists at Edinburgh University have been working to change that through DecodeME, the world's largest ME study, which is unravelling 20,000 DNA samples in a bid to find genetic explanations for the disease and potential treatments.

It is also hoped that the database can help to accelerate work towards a diagnostic test. The first results are expected within the next six months.

Answers - and acceptance - are long overdue.