Melvin Ramsay was the recognized authority in ME from 1955 until his death in 1990. However, research has advanced further in the understanding of M.E. since this time (particularly regarding cardiac involvement in ME) and so this section is included for its historical significance rather than these works constituting the totality of our current state of knowledge on the illness. Having said that, few authors or doctors involved in M.E. today are as accurate in their observations about the illness as Ramsay was, all those years ago.
The following articles explain Ramsay's contribution to M.E. research and advocacy - and to every patient with M.E. - in more detail. We all all deeply indebted to the many years of work on M.E. by Dr Ramsay.
ME and CFS, The Definitions
Myalgic Encephalomyelitis is different form all other illnesses and as is very clearly pointed out above, M.E. is different from all the definitions of CFS.
Concerned that there may be attempts to confuse ME with other conditions, in 1989 Dr. Ramsay wrote a concise statement to clarify that M.E. is distinct and identifiable and is not to be confused with other forms of debility or flu or fatigue or post flu.
As we know, ME has many, many, many symptoms but Dr Ramsay presents this statement to clarify how ME is different from all other conditions, and a definite case can be recognized clinically by a triad of particular muscle, brain and circulatory dysfunctions that are characteristic.
We are indebted to Dr Ramsay, an outstanding infectious disease specialist who devoted much effort to the investigation of our disease from the time that he was confronted with the epidemic at the London hospitals in the 1950’s. Dr Ramsay is the recognized authority in ME, established upon his direct personal involvement in the investigation of the epidemics, research and scientific studies and the examination and treatment of individual patients for over 30 years. Dr. Ramsay’s fame and standing are no accident and we can see that his descriptions of what make this disease unique are accurate and Ramsay’s M.E. is the same disease we have today.
It is clear that attempts at confusion and name changes would serve to obscure its history and also its origins. So we must never forget Ramsay. The worldwide epidemic we have today is the same disease that Ramsay encountered many years ago.
Are Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Synonymous Terms? by Byron Hyde MD
Myalgic Encephalomyelitis (M. E.) This is a term used to describe an epidemic and sporadic disease process that is associated with a chronic debilitating illness of children and adults. Variants of this term M.E. were first used following a series of repeating epidemics starting in May 1955 in the Royal Free Hospital in London England. New outbreaks of this illness continued until 1958 in various London area hospitals. M.E. and these epidemics are well described by A. Melvin Ramsay in his book Myalgic Encephalomyelitis and Post-Viral Fatigue States.
[See below for details of this book]
The M.E. Society of America
The M.E. Society of America is an organization that seeks to promote understanding of the disease known as myalgic encephalomyelitis (ME/CFS), a multi-system disease adversely affecting the heart, brain, neuroendocrine, immune, and circulatory systems. M.E. was first described in the 1950’s following the recognition of many cases around the world, including a number of cases at the Royal Free Hospital in England. Many different viruses, bacteria, or toxins in combination with genetic factors may be involved in the etiology of the disease. Studying research-based subsets is the key to scientific progress in this area of investigation. In a number of publications, Dr. A. Melvin Ramsay outlined a definitional framework for M.E. that described abnormal muscle metabolism, circulatory impairment, and cerebral involvement. Unfortunately, in 1988, what was historically known both as myalgic encephalomyelitis and as the well-documented epidemic neuromyasthenia was renamed "Chronic Fatigue Syndrome" by employees at the Centers for Disease Control (CDC), who imposed the misleading "fatigue" term onto patients and researchers. In 1994, more damage was done when the CDC broadened the definition for CFS to include many diverse, unrelated diseases, for which "CFS" became an umbrella term. Broadening the case definition led to conflicting research data, but there is a more current, research-updated case definition compiled by the Canadian Consensus Panel for ME/CFS, which includes neuroendocrine, immune, and cardiocirculatory symptoms as well as abnormal muscle metabolism, circulatory impairment, and cerebral/neurological involvement, available on this Web site. The ICD-10 code for ME/CFS is G93.3.
Ramsay's preliminary observations and identification of the essential features of the disease were well grounded, but in the years since Ramsay published, there has been a great deal of research that has increased our understanding. For example, mounting research indicates that orthostatic intolerance, in some cases involving a virally induced dysfunction of the autonomic nervous system, low plasma and/or erythrocyte volume, and left-ventricular failure upon postural stress is a prominent feature of ME/CFS when the degree of illness is moderate or severe. The Canadian Clinical Case Definition lists neurally mediated hypotension, postural orthostatic tachycardia syndrome, cardiac arrhythmia, and neuroendocrine immune manifestations. While it also lists fatigue as a symptom, a more accurate use of language would be to use "muscle weakness and pain" or "delayed muscle recovery after exercise" as opposed to the vague and inaccurate term "fatigue" for muscle problems. Researchers should eliminate the label of fatigue and focus instead on a neuroendocrine immune, cardiocirculatory model. In addition to what the Canadian Consensus Panel described, some research has shown respiratory chain deficits and damage to the mitochondrial DNA, and, when the degree of illness is severe, acquired myopathic changes in some subsets.
A Public Statement to Government Health Ministers and an ALERT to citizens worldwide
Atypical Polio was first identified in 1934 by a US Public Health Service investigation of the California outbreak. The Surgeon General took interest because of the very high number of medical personnel that were affected at the Los Angeles county hospital. The hospital was dealing with a large number of Polio cases that summer. This pattern of conditions was similar to many of the outbreaks of this rare disease that occurred over many years worldwide.
The increased frequency of these outbreaks during the 1950’s brought greater interest to our disease. Dr Melvin Ramsay and others further defined the illness, and Myalgic Encephalomyelitis became the recognized term for this neurologic infectious disease.
A number of distinguished doctors continued to study and report on ME outbreaks, including Wallis, Acheson, Richardson, Parish, Henderson, Shelokov, Dowsett, Ryll, Behan, and Hyde. Their writings have brought us a wealth of information about Myalgic Encephalomyelitis, and a continuous historical record of our disease over many decades. Perhaps most impressive among them, Dr Richardson could attest that the cases he saw in the year 2000 have the same disease as patients that he and Dr Ramsay encountered in the 1950's: the neurological disease defined as Myalgic Encephalomyelitis.
MYALGIC ENCEPHALOMYELITIS
M.E. has been described several times in medical literature. It was first defined in an editorial published in the Lancet in 1956 which discussed several epidemic outbreaks of prior years. This first description was rather loose and was not very specific. In later years Ramsay, EG Dowsett and others refined the definition of M.E. in various published papers.
What is ME? What is CFS? Information for Clinicians & Lawyers by Eileen Marshall, Margaret Williams & Professor Malcolm Hooper, 2001
Myalgic Encephalomyelitis (ME) has been documented in the medical literature from 1934. (1) The Wallis description of ME (not Chronic Fatigue Syndrome, known as CFS - see below) was in 1957. (2) Sir Donald Acheson's (a former UK Chief Medical Officer) major review of ME was in 1959. (3) In 1962, the distinguished neurologist Lord Brain included it in the standard textbook of neurology. (4) ME has been formally classified by the World Health Organisation as a neurological disorder in the International Classification of Diseases (ICD) since 1969 (ICD-8: Vol I: code 323, page 158; Vol II (Code Index) page 173). On 7th April 1978 the Royal Society of Medicine held a symposium on ME at which ME was accepted as a distinct entity. The symposium proceedings were published in The Postgraduate Medical Journal in November that same year. (5) The Ramsay case description was published in 1981. (6) Since 1989, the Medical Information Service of the British Library has produced quarterly updates on the disorder: these updates (known as CATS, or Current Awareness Topics) compile published international research and clinical evidence about the condition and contain abstracts of published articles. The Centres for Disease Control (the US federal agency charged with the containment of diseases and known internationally as the CDC) designates it for funding status as "A serious legitimate diagnosis CDC PRIORITY 1 disease of public health importance".
ME remains classified in the current ICD as a neurological disorder (ICD 10. G.93.3)
The first definition of CFS (1988 Holmes et al) concentrated on "fatigue" persisting for at least six months; it expressly excluded the cardinal features of ME which had been documented for decades despite the fact that ten years earlier, the UK Royal Society of Medicine had accepted ME as a distinct nosological entity. In 1988 in the US, the eighteen strong panel of medical scientists and clinicians charged with formulating a new case definition and new name could not agree: two of the most experienced members refused to sign the final document and withdrew from the panel because the proposed definition and new name were too different from the ME with which they were so familiar. (109) Those two members were Dr Alexis Shelokov from the US and Dr Gordon Parish from the UK. Dr Parish now lives in Scotland and is curator of the Ramsay Archive, which is possibly the world's largest collection of medical papers on ME which pre-date 1988.
The Impact of Persistent Enteroviral Infection by Dr Elizabeth Dowsett
By 1972, a distinguished group of clinicians and scientists had set out to share information, form research groups and hold national and international conferences related to the problems of ME. Following successful vaccination against the three polio viruses during the early 1960s over 60 epidemics of atypical, non paralytic polio had been recorded in the UK alone. It was obvious that (since Nature abhors a vacuum) the non polio enteroviruses were naturally filling the gap(6), and demonstrating their potential for inducing a serious neurological disease of considerable chronicity, mainly affecting school children and middle aged adults in the most important and productive years of their lives. Most of the famous London teaching hospitals were involved, at that time in investigating epidemics and in subsequent research while links were forged with international institutions in USA, Canada, Europe and Australasia, facing the same problems.
Research first published in 1975(7) indicated that the enteroviruses (which triggered the illness) belonged to a vast group of viruses (many of them at that time yet to be discovered) which were able to survive persistently in the human body as an uncoated form of intracellular genetic material, thus avoiding direct challenge from the immune system. Simple (indirect) laboratory confirmation of their presence based on blood tests, was available in most NHS laboratories without let or hindrance, while the European enterovirus reference centre at Ruchill Hospital in Glasgow, provided expert identification. It was clear from their work that epidemics occurred at 10 year intervals and pandemics (world wide spread) were approximately 20 years apart. By 1987, famous research workers, including Drs Ramsay, Richardson and (from Canada and the USA) Byron Hyde and David Bell, Professors Mowbray and Banatvala and scientists of the status of Len Archard and (from the USA) Roger Loria and Richard Bruno and Nancy Frick, were able to enlighten and to back up the hundreds of GPs and NHS consultants dealing with an ever increasing number of seriously disabled patients. The potential of this disease to disable children and interrupt their education was realised(8) and (in the early 1980’s) the late effects of polio were rediscovered (earlier reports dated from the late 19th century).
Vade MEcum Eileen Marshall and Margaret Williams, 28th June 2005
(a "vade mecum" is a small reference guide containing information that is frequently consulted)
Two of the biggest problems currently besetting those with Myalgic Encephalomyelitis (ME) are (i) how to ensure that a physician accurately records the diverse and fluctuating symptomatology without dismissing such symptomatology as somatoform disorder and (ii) how to ensure that s/he understands that ME is not identical to "CFS/ME" as portrayed by psychiatrists of the "Wessely School", whose papers purporting to address ME (under the umbrella of "CFS") currently flood the literature but which bear little if any relationship to authentic ME.
Although they claim otherwise, "Wessely School" psychiatrists who advise Government and the medical insurance industry are not talking about authentic ME as listed in the WHO International Classification of Diseases (also listed as CFS, which is why it is sometimes referred to as ME/ICD-CFS) and as described by the late Dr Melvin Ramsay, but about chronic, medically unexplained tiredness that they unhelpfully refer to as "CFS/ME" and attribute to "aberrant illness belief".
Evidence–based Psychiatry ?
Eileen Marshall and Margaret Williams, 11th June 2005
Since 1938, there have been thousands of published papers in the medical literature that document biological abnormalities in ME/ICD-CFS and there are also many books, both self-help and medical textbooks, some of the best – in addition to Osler’s Web, which is essential reading -- being (1) The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome; edited by Byron M Hyde, Jay Goldstein and Paul Levine, published by The Nightingale Research Foundation, Ottawa, 1992; (2) Myalgic Enephalomyelitis; Celia Wookey; published by Croom Helm Ltd 1986; reprinted 1988 and 1989, Chapman and Hall Ltd – more essential reading, as this book provides numerous case histories that cannot be bettered as teaching material; (3) Postviral Fatigue Syndrome; A Melvin Ramsay; published by Gower Medical Publishing, London, 1986; reprinted as Myalgic Encephalomyelitis and Postviral Fatigue States; Gower Medical Publishing, London, 1988 (soon to be re-issued by the UK ME Association); (4) The Disease of a Thousand Names: Chronic Fatigue / Immune Dysfunction Syndrome; David S Bell; published by Pollard Publications, Lyndonville, New York 1991; (5) Chronic Fatigue Syndrome and the Body’s Immune Defense System; Roberto Patarca-Montero; published by Haworth Medical Press, 2002; (6) Chronic Fatigue Syndrome – A Biological Approach; edited by Patrick Englebienne and Kenny de Meirleir; published by CRC Press, 2002 and (7) Post-Viral Fatigue Syndrome; edited by Rachel Jenkins and James Mowbray; published by John Wiley & Sons, Chichester 1991.
No-one who is aware of this wealth of information can credibly doubt the reality, the validity and the devastation of this organic multi-system disease.
Profits Before Patients?
Eileen Marshall and Margaret Williams, 15th April 2005
Cardiac problems in ME have been documented in the medical literature for over half a century – the fact that normal loss of blood flow may be persistent in ME was documented by Gilliam in 1938. Other cardiac problems have been consistently in the literature since that time, for example, Wallis (1957); Leon-Sotomayer (1965) and Ramsay (1950s-1980s), and in his 1988 CIBA Foundation lecture, Professor Peter Behan from Glasgow confirmed that he was regularly able to demonstrate micro-capillary perfusion defects in the cardiac muscle of ME patients. Also in 1988 it was noted that "Evidence of cardiac involvement may be seen: palpitations, severe tachycardia with multiple ectopic beats and occasional dyspnoea may occur and are quite distressing. It is of great interest that some patients have evidence of myocarditis" (see Crit Rev Neurobiol 1988:4:2:157-178). In 2001, in her Research Update presentation to the Alison Hunter Memorial Foundation Third International Clinical and Scientific Conference on ME/ICD-CFS held in Sydney, Professor Mina Behan from Glasgow (recently deceased) stated: "Convincing evidence of cardiovascular impairment can be demonstrated".
[For the early references, see "The Clinical and Scientific Basis of ME/CFS" edited by Byron Hyde, Jay Goldstein and Paul Levine, published in 1992 by The Nightingale Research Foundation, Ottawa. See also BMJ 1989:299:1219; Postviral Fatigue Syndrome ed. Rachel Jenkins and James Mowbray, pub. John Wiley & Sons, 1992; Inf Dis Clin Practice 1997:6:327-333; Proc Soc R Coll Physicians Edinb 1998:28:150-163; Hum. Psychopharmacol.Clin.Exp 1999:14:7-17; Clin Physiol 1999:19:2:111-120; JCFS 2001:8:(3-4):107-109].