In 1986, Dr Melvin Ramsay, a British physician renowned for his research and advocacy on myalgic encephalomyelitis (ME), published Postviral Fatigue Syndrome: The Saga of Royal Free Disease (later titled Myalgic Encephalomyelitis and Postviral Fatigue States: The Saga of Royal Free Disease). The book documents cases of ME following various confirmed or suspected infectious outbreaks, including the notable 1955 Royal Free Hospital outbreak, during which Dr Ramsay served as a consultant. Drawing from years of clinical experience and accumulated evidence, his observations and subsequent insights continue to be useful. Here is a selection of quotes from the book, grouped into 10 themes, that resonates decades later.
1. Infectious origins and viral involvement
Dr Ramsay speculated that ME followed an infectious illness, likely viral in nature (even at times when no specific infectious agent had yet been confirmed).
“The syndrome to which Royal Free disease belongs is one that follows an infectious disease process which is probably caused by a virus, although no specific aetiological agent has been identified.”
“It is quite understandable that many may consider it is premature to talk of a well-defined clinical entity of infectious origin, when evidence of a specific aetiological agent is singularly lacking, but improved methods of virus culture may fill the gap…”
“One of the most severe cases I have encountered is the wife of a doctor in a northern industrial town; she was a prominent amateur athlete until the age of 22 when she contracted ‘flu’. Since then she has battled with the muscle fatigability of ME for over forty years; during that time she has been seen by several consultant physicians who could find no cause for her symptoms and virtually pronounced her ‘neurotic’…”
2. Terminology and misconceptions about severity
He challenged the term “benign” as it did not capture the disabling nature of the disease.
“The word ‘benign’ can only be justified on the grounds that there is no mortality from the disease and Dr Sigurdsson (1956) registered strong objections to its use as it ‘certainly was not benign in other respects’. I have no doubt that many victims who are permanently incapacitated would readily agree. I therefore suggest that the term ‘epidemic myalgic encephalomyelitis’, put forward by a leader in the British Medical Journal in 1978, is preferable. Colloquially we tend to refer to it as ‘ME’…”
Note: Since this, there have been deaths attributed to ME.
3. Further on naming – the confusion of “different names for the same disease”
Dr Ramsay was concerned that inconsistent naming created confusion in relation to understanding the disease, including its global reach.
“An outbreak which occurred in Iceland in 1948-49 was named both ‘Iceland disease’ and ‘Akureyri disease’ after the name of the town in which it first appeared. The use of such names is to be regretted since it tends to limit the disease to particular geographical sites and obscures the fact that the condition can be found worldwide.”
On the term “postviral fatigue syndrome”:
“In America the term ‘epidemic neuromyasthenia’ was introduced to describe the neuritic and muscle abnormalities and was adopted by physicians who reported at the Great Ormond Street Hospital in 1970 because the neurological findings were sparse…A further term, ‘postviral fatigue syndrome’, has been coined and this has been accepted on both sides of the Atlantic, thus avoiding the confusion which arises from different names for the same disease.
For the purposes of this narrative, I propose to use the term ME, with which we have all been familiar with for so many years past.”
4. Muscle and brain involvement
Ramsay considered muscle fatigability and cognitive difficulties essential for diagnosing ME.
“This phenomenon of muscle fatigability is the dominant and most persistent feature of the disease and in my opinion a diagnosis should not be made without it. Restoration of muscle power after exertion can take three to five days or even longer.”
“Its unique nature lies in the fact that there is a prolonged delay, up to three to five days or even longer, before the restoration of muscle power after exercise is complete … Whether occurring in endemic or epidemic form, this is the feature which binds the disease into one single clinical entity.”
“The third component of what I have always regarded as the ‘diagnostic triad’ of ME is cerebral involvement. This generally takes the form of impairment of memory and inability to concentrate…Two doctors have told me that they found themselves using wrong words, for example ‘hot’ when they meant ‘cold’, while the tendency to fumble simple manoeuvres which had previously presented no difficulty is also a common occurrence in the aftermath of ME.”
5. Rest and recovery
Dr Ramsay emphasised the importance of rest and discussed the extended timelines needed for and uncertainty surrounding recovery.
“While some cases of ME make a complete recovery, though only after a period of many months or years, the circumstances of their individual lives may play an important part…Absolute rest in the early stages of the disease can prove a very strong determining factor in the outcome.”
“Many doctors and their wives suffer from ME and I have found that their period of recovery varies from ten to twenty years. Some have to face permanent incapacity …”
6. Relapse, triggers, and disease fluctuation
He documented the unpredictable nature of the disease, with relapses often occurring after physical and/or mental stress.
“Relapses resulting from excessive physical and/or mental stress or after a further virus infection are an accepted feature of the disease. In most cases there is fluctuation in symptoms from one day to another or from one part of the day to another.”
“A small group of patients recover completely but are subject to relapses even after a period of several years. Dr Gordon Parish…has gone as long as four years in perfectly sound health, yet his last relapse incapacitated him for six months and compelled him to take early retirement.”
Note: Dr Gordon Parish was one of the group of trustees who founded ME Research UK (originally called MERGE) in 2000, becoming a valued patron thereafter.
7. Poor medical education and not being believed
Ramsay was acutely aware of the disbelief individuals with ME face and the impact of this.
“…Dr Scott and I found that the endemic case has a well-defined and, with experience, an easily recognizable pattern, albeit one which is not taught to medical students and this may provide an explanation as to why many doctors disregard or fail to notice vital points.”
“Another doctor in general practice begged me to obtain his retirement from NHS practice… I had some difficulty in persuading the DHSS [Department of Health and Social Security] that ME was a very real disease.”
“… His mother applied for invalidity benefit and was seen by a senior neurologist who considered her to be a case of ‘near-delusional self-deception’ and described ME as a ‘figment of the imagination both on the part of the patients who think they are suffering from it and the doctors who make the diagnosis’. The prejudice harboured against those of us who hold the view that ME is an organically determined disease defies rational explanation.”
8. Rebutting the ‘mass hysteria’ theory
He strongly opposed the theory that ME was mass hysteria.
“The first paper (McEvedy & Beard, 1970a) gave their reasons for regarding the Royal Free Hospital as an instance of ‘mass hysteria’… So radically did McEvedy & Beard influence medical opinion that when I have attempted to put the case for an organic explanation of the disease to younger present-day consultants I have encountered an attitude of pitying disbelief and the remark, ‘Oh but that was long ago shown to have been the result of mass hysteria’. I can only say that a whole generation of unfortunate victims of the disease have been driven to despair by the failure of their doctors to recognize the validity of their symptoms…”
Dr Ramsay referenced Dr D.C. Poskanzer:
“Poskanzer (1970) wrote that [:] the question of ‘mass hysteria’ had been discarded for a number of reasons, namely, cases occurring within the same household are varied in their features and course, separate illnesses appear at random intervals instead of simultaneously, epidemiologically the consistency of the course and similarity of symptoms despite the variety of people and communities that were affected make hysteria unlikely. The disease is consistent from outbreak to outbreak, in different countries, different countries, different years and different peoples and finally the mental symptoms of depression, emotional lability, impaired memory and powers of concentration are consistent with organic disease as compared with the shallowness and indifference of hysteria.”
9. The future of research and understanding ME
He showed foresight in his reflections on potential pathophysiology of ME and the need for biological research.
“The future of medical virology will probably relate to persistent virus infections and in this group are included many of the herpes group of viruses which may not always kill the host cell in which they replicate, may not provoke an immune response or may not generate immune responses that are effective in clearing the virus. Southern & Oldstone also discussed both how persistent infections become established not by destroying the cells that they infect but by altering the specialized function of the infected cell. They consider that such disorders involve primarily the immune, nervous and endocrine systems. All these systems, particularly the first two, are vitally involved in the pathogenesis of ME.”
10. Diagnosis and management
Ramsay discussed the foundational importance of a correct diagnosis.
“The patients whom Dr Scott and I saw came to us in a state of utter despair, their medical advisers finding themselves baffled by a medley of symptoms which they were unable to place into any recognizable category of disease. Without exception, these patients had been referred for consultant opinion and they were generally seen by neurologists who were equally nonplussed, having found no abnormality on physical examination and with extensive laboratory investigations failing to yield a clue. I must add, however, that in no case had any investigation of the immune system been carried out. Many of these patients were finally referred for psychiatric opinion and it is interesting that four psychiatrists to my knowledge referred patients back with a note which in essence said ‘I do not know what this patient is suffering from, but the case does not come into my field’.”
“The basic essential in treatment is correct diagnosis. … Many of these sufferers have been referred over a span of several months or years to various authorities without being able to obtain a definite diagnosis. Most have been labelled ‘depression’ and, finally ‘neurosis’. When they are told that their illness has a name and is not ‘all in the mind’ and they receive a measure of reassurance regarding their future, one can see the mantle of depression fall from their shoulders as fresh hope dawns…”
“One can hold out no specific ‘cure’ for the illness but advice should immediately be given that they adapt their lives to a quieter tempo and take adequate periods of complete rest after physical exertion…”
