The Hummingbirds' Foundation for M.E.

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.

"...The failure to agree on firm diagnostic criteria has distorted the data base for epidemiological and other research, thus denying recognition of the unique epidemiological pattern of myalgic encephalomyelitis." Dr. A. Melvin Ramsay, quoted on NAME.US.org.

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.

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.

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 19^th century).

(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, 11^th 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, 15^th April 2005

[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].

MYALGIC ENCEPHALOMYELITIS : A Baffling Syndrome With a Tragic Aftermath. By A. Melvin Ramsay M.D., Hon Consultant Physician, Infectious Diseases Dept, Royal Free Hospital. [Published 1986]

Myalgic Encephalomyelitis leaves a chronic aftermath of debility in a large number of cases. The degree of physical incapacity varies greatly, but the dominant clinical feature of profound [paralytic muscle] fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.

Although the onset of the disease may be sudden and without apparent cause, as in those whose first intimation of illness is an alarming attack of acute vertigo, there is practically always a history of recent virus infection associated with upper respiratory tract symptoms though occasionally there is gastro-intestinal upset with nausea and vomiting. Instead of making a normal recovery, the patient is dogged by persistent profound fatigue accompanied by a medley of symptoms such as headache, attacks of giddiness, neck pain, muscle weakness, parasthesiae, frequency of micturition or retention, blurred vision and/or diplopia and a general sense of 'feeling awful'. Many patients report the occurence of fainting attacks which abate after a small meal or even a biscuit, and in an outbreak in Finchley, London, in 1964 three patients were admitted to hospital in an unconscious state presumably as a result of acute hypoglycaemia. There is usually a low-grade pyrexia [fever] which quickly subsides. Respiratory symptoms such as sore throat tend to persist or recur at intervals. Routine physical examination and the ordinary run of laboratory investigations usually prove negative and the patient is then often referred for psychiatric opinion. In my experience this seldom proves helpful is often harmful; it is a fact that a few psychiatrists have referred the patient back with a note saying 'this patient's problem does not come within my field'. Nevertheless, by this time the unfortunate patient has acquired the label of 'neurosis' or 'personality disorder' and may be regarded by both doctor and relatives as a chronic nuisance. We have records of three patients in whom the disbelief of their doctors and relatives led to suicide; one of these was a young man of 22 years of age.

The too facile assumption that such an entity - despite a long series of cases extending over several decades - can be attributed to psychological stress is simply untenable. Although the aetiological factor or factors have yet to be established, there are good grounds for postulating that persistent virus infection could be responsible. It is fully accepted that viruses such as herpes simplex and varicella-zoster remain in the tissues from the time of the initial invasion and can be isolated from nerve ganglia post-mortem; to these may be added measles virus, the persistence of which is responsible for subacute sclerosing panencephalitis that may appear several years after the attack and there is a considerable body of circumstantial evidence associating the virus with multiple sclerosis. There should surely be no difficulty in considering the possibility that other viruses may also persist in the tissues. In recent years routine antibody tests on patients suffering from myalgic encephalomyelitis have shown raised titres to Cocksackie B Group viruses. It is fully established that these viruses are the aetiological agents of 'Epidemic Myalgia' or 'Bornholm's Disease' and that, together with ECHO viruses, they comprise the commonest known virus invaders of the central nervous system. This must not be taken to imply that Cocksackie viruses are the sole agents of myalgic encephalo- myelitis since eny generalised virus infection may be followed by a period of post-viral debility. Indeed, the particular invading microbial agent is probably not the most important factor. Recent work suggests that the key to the problem is likely to be found in the abnormal immunological response of the patient to the organism.

A second group of clinical features found in patients suffering from myalgic encephalomyelitis would seem to indicate circulatory disorder. Practically without exception they complain of coldness in the extremities and many are found to have abnormally low temperatures of 94 or 95 degrees F. In a few, these are accompanied by bouts of severe sweating even to the extent of waking during the night lying in a pool of water. A ghostly facial pallor is a well known phenomenom and this has often been detected by relatives some 30 minutes before the patient complains of being ill.

The third component of the diagnostic triad of myalgic encephalo- myelitis relates to cerebral activity. Impairment of memory and inability to concentrate are features in every case. Many report difficulty in saying the right word and are conscious of the fact that they continue to say the wrong one, for example 'cold' when they mean 'hot'. Others find that they start a sentence but cannot complete it, while some others have difficulty compre- hending the written or spoken word. A complaint of acute hyperacusis is not infrequent; this can be quite intolerable but alternates with periods of normal hearing or actual deafness. Vivid dreams generally in colour are reported by persons with no previous experience of such a phenomenom. Emotional lability is often a feature in a person of previous stable person- ality, while sudden bouts of uncontrollable weeping may occur. Impairment of judgement and insight in severe cases completes the 'encephalitic' component of the syndrome.

I would like to suggest that in all patients suffering from chronic debility for which a satisfactory explanation is not forthcoming a renewed and much closer appraisal of their symptoms should be made. This applies particularly to the dominant clinical feature of profound fatigue. While it is true that there is considerable variation in degree from one day to the next or from one time of the day to another, nevertheless in those patients whose dynamic or conscientious temperaments urge them to continue effort despite profound malaise or in those who, on the false assumption of 'neurosis', have been exhorted to 'snap out of it' and 'take plenty of excercise' the condition finally results in a state of constant exhaustion. This has been amply borne out by a series of painstaking and meticulous studies carried out by a consultant in physical medicine, himself an ME sufferer for 25 years. These show clearly that recovery of muscle power after exertion is unduly prolonged. After moderate excercise, from which a normal person would recover with nothing more than a good night's rest, an ME patient will require at least 2 to 3 days while after more strenuous excercise the period can be prolonged to 2 or 3 weeks or more. Moreover, if during this recovery phase, there is a further expenditure of energy the effect is cumulative and this is responsible for the unrelieved sense of exhaustion and depression which characterises the chronic case. The greatest degree of muscle weakness is likely to be found in those muscles which are most in use; thus in right- handed persons the muscles of the left hand and arm are found to be stronger than those on the right. Muscle weakness is almost certainly responsible for the delay in accommodation which gives rise to blurred vision and for the characteristic feature of all chronic cases, namely a proneness to drop articles altogether with clumsiness in performing quite simple manoeuvres; the constant dribbling of saliva which is also a feature of chronic cases is due to weakness of the masseter muscles. In some cases, the myalgic element is obvious but in others a careful palpitation of all muscles will often reveal unsuspected minute foci of acute tenderness; these are to be found particularly in the trapezii, gastrocnemii and abdominal rectii muscles.

The clinical picture of myalgic encephalomyelitis has much in common with that of multiple sclerosis but, unlike the latter, the disease is not progressive and the prognosis should therefore be relatively good. However, this is largely dependent on the management of the patient in the early stages of the illness. Those who are given complete rest from the onset do well and this was illustrated by the aforementioned three patients admitted to hospital in an unconscious state; all three recovered completely. Those whose circumstances make adequate rest periods impossible are at a distinct disadvantage, but no effort should be spared to give them the all-essential basis for successful treatment. Since the limitations which the disease imposes vary considerably from case to case, the responsibility for determining these rests upon the patient. Once these are ascertained the patient is advised to fashion a pattern of living that comes well within them. Any excessive physical or mental stress is likely to precipitate a relapse.

The clinical identity of the Myalgic Encephalomyelitis syndrome rests on three distinct features, namely:

A. A unique form of muscle fatiguability whereby, even after a minor degree of physical effort, 3, 4, 5 days or longer elapse before full muscle power is restored.

B. Variability and fluctuation of both symptoms and physical findings in the course of a day. And,

C. An alarming tendency to become chronic.

If we take the well known condition of post influenzal debility as an example of a postviral fatigue state we see that in all these particulars it constitutes a complete contrast. The fatigue of post influenzal debility is part of a general debility with no distinguishing characteristic of its own, it shows no variation in intensity in the course of a day and although it may last weeks or even many months it has no tendency to become chronic.

The clinical course of the Myalgic Encephalomyelitis syndrome is consistent with a virus type of infection. It most commonly commences with an upper respiratory tract infection with sore throat, coryza, enlarged posterior cervical glands and a characteristic low-grade fever with temperatures seldom exceeding 101°F. Alternatively there may be a gastro-intestinal upset with diarrhoea and vomiting. In 10% of the 53 cases we reported between 1955 and 1958 the onset took the form of acute vertigo often accompanied by orthostatic tachycardia.

The prodromal phase is characterised by intense persistent headache, paraesthesiae, blurring of vision and sometimes actual diplopia. Intermittent episodes of vertigo may occur at intervals both in the prodromal and later phases of the disease. Loss of muscle power is accompanied by an all-pervading sense of physical and mental wretchedness. Some patients lack the mental initiative to cope with the situation; on the other hand the more extrovert types show a determination not to give in to the disease but their efforts to compel their muscles to work only serves to make the condition worse.

Once the syndrome is fully established the patient presents a multiplicity of symptoms but these can conveniently be discussed under three headings, namely:

1. Muscle Phenomena

The unique form of muscle fatiguability described above is virtually a sheet-anchor in the diagnosis of Myalgic Encephalomyelitis and without it a diagnosis should not be made. I am informed of two families who are said to have all the conditions conforming to the clinical picture but lacking the muscle fatiguability. These cases should be very carefully reviewed. It is quite common to find that muscle power is normal during a remission and in such cases tests for muscle power should be repeated after exercise.

In severe cases of M.E. muscle spasm and twitchings are a prominent feature and these give rise to acute muscle tenderness. In less severe cases muscle tenderness may not be so readily elicited but careful palpation of the trapezii and gastrocnemii (the muscle groups most commonly involved in M.E.) with the tip of the forefinger should enable the examiner to detect minute foci of exquisite tenderness. It is interesting to note that Dr. Garnet Simpson in Sydney, Australia (1986) without any prior knowledge of my writings devised the identical technique and found that detection of these foci 'will make the patient yelp'. In the aftermath of the disease patients frequently complain of a tendency to 'fumble' with relatively simple manoeuvres such as turning a key in the lock or taking a cork out of a bottle.

2. Circulatory Impairment

Most cases of M.E. have cold extremities and hypersensitivity to climatic change but the most striking illustration of this conditionis the observation by relatives or friends of an ashen-grey facial pallor some 20 or 30 minutes before the patient complains of feeling ill.

3. Cerebral Dysfunction

Impairment of memory, impairment of powers of concentration and emotional lability are the cardinal features. Inability to recall recent events, difficulty in completing a line of thought thus becoming 'tongue-tied' in the middle of a sentence and a strong inclination to use wrong words, saying 'door' when they mean 'table' or 'hot' when they mean to say 'cold' are all common deviations from normal cerebral function. Complete inability to comprehend a paragraph even after a second reading is very noticeable. These may be accompanied by bouts of uncontrollable weeping which proves acutely embarrassing to those of a stoical temperament who regard such an event as demeaning to their philosophy of life. Alterations of sleep rhythm and/or vivid dreams are common and these occur in patients with no previous experience of such phenomena. In a very tragic case in a young University student complete reversal of sleep rhythm led to suicide.

Frequency of micturition and hyperacusis are an almost invariable accompaniment of these cerebral features and together with episodic sweating and orthostatic tachycardia can only be attributed to involvement of the autonomic nervous system. Though less frequently encountered episodic sweating is a very striking event. The wife of one such case is a trained nurse and reports that her husband may wake around 4 a.m. lying in a pool of water and with a temperature of 94 to 95°F. I diagnosed this patient as a case of M.E. fifteen years ago; the sweating episodes still persist.

Variability and fluctuation of both symptoms and physical findings in the course of a day is a constant feature in the clinical picture of M.E.

The Chronicity of Myalgic Encephalomyelitis

The alarming tendency of M.E. sufferers to become chronic is the final distinguishing feature from all other forms of postviral fatigue syndrome. In a group of 150 members of the Association in the North of England 36 have had the disease for 10 years or more. Of 55 members in a small group in Surrey 29 have had the disease for 10 years or more; of these 4 have had the disease for over 20 years, 4 have had it for over 30 years and one for over 40 years. One member in the north country group has also had it for over 40 years. I am fully satisfied that at a conservative estimate 25% of victims of M.E. have had the disease for 10 years or more. Only Myalgic Encephalomyelitis has such a legacy.

The chronic case of M.E. can take two different forms. In the first there is a recurring cycle of remission and relapse. In three doctors who contracted the infection between 1955 and 1958 the endless alternation of remission and relapse, still continues. In my experience a remission can last as long as 3 years. Marinacci and Von Hagen record one of seven years. The second form of chronic M.E. is more tragic in that no remission occurs. The patient lives a very restricted existence, unable to walk more than a short distance and that with considerable difficulty, unable to read for any length of time and in many cases subject to disturbance of sleep rhythm and/or vivid dreams and always the almost invariable frequency of micturition, hyperacusis and dizzy spells. A few of these chronic cases are compelled to sleep upright as a result of permanent weakness of the intercostal and abdominal recti musculature.

THE CLINICAL IDENTITY OF THE MYALGIC ENCEPHALOMYELITIS SYNDROME By A.Melvin Ramsay M.A. M.D.

An article by David, Wessely and Pelosi entitled 'Postviral Fatigue Syndrome: time for a new approach' (1988) makes it abundantly clear that in my monograph 'Postviral Fatigue Syndrome: The Saga of Royal Free Disease' I failed to draw a clear distinction between Myalgic Encephalomyelitis and other postviral fatigue states. I have never approved of the term 'Postviral Fatigue Syndrome' and accepted it with great reluctance when Gower Medical Publishing Limited insisted that it should be used as a title for my monograph. The fact that it was accepted on both sides of the Atlantic and obviated the disadvantage of an American term 'Epidemic Neuromyasthenia' and a British term 'Myalgic Encephalomyelitis' for the same disease was in its favour. Its disadvantage lay in the fact that it provided too wide a cover for the many postviral fatigue states that can quite legitimately be included under such a title. I insisted on using the term Myalgic Encephalomyelitis for my treatise. When, on the occasion of a recent ITV programme on the subject of Myalgic Encephalomyelitis, an immunologist stated the 'M.E. and PVFS are regarded as synonymous' I realised that my objection to the latter term was fully justified and that it was incumbent on me to show that such a statement is blatantly untrue. It is fortunate that a second edition of my monograph affords me the opportunity to demonstrate that the clinical features of Myalgic Encephalomyelitis provide a sharp contrast to all other forms of postviral fatigue syndrome.

The clinical identity of the Myalgic Encephalomyelitis syndrome rests on three distinct features, namely:

A. A unique form of muscle fatiguability whereby,even after a minor degree of physical effort, 3,4,5 days or longer elapse before full muscle power is restored.

B. Variability and fluctuation of both symptoms and physical findings in the course of a day. And,

C. An alarming tendency to become chronic.

If we take the well known condition of post influenzal debility as an example of a postviral fatigue state we see that in all these particulars it constitutes a complete contrast. The fatigue of post influenzal debility is part of a general debility with no distinguishing characteristic of its own, it shows no variation in intensity in the course of a day and although it may last weeks or even many months it has no tendency to become chronic.

The clinical course of the Myalgic Encephalomyelitis syndrome is consistent with a virus type of infection. It most commonly commences with an upper respiratory tract infection with sore throat, coryza, enlarged posterior cervical glands and a characteristic low-grade fever with temperatures seldom exceeding 101°F. Alternatively there may be a gastro-intestinal upset with diarrhoea and vomiting. In 10% of the 53 cases we reported between 1955 and 1958 the onset took the form of acute vertigo often accompanied by orthostatic tachycardia.

The prodromal phase is characterised by intense persistent headache, paraesthesiae, blurring of vision and sometimes actual diplopia. Intermittent episodes of vertigo may occur at intervals both in the prodromal and later phases of the disease. Loss of muscle power is accompanied by an all-pervading sense of physical and mental wretchedness. Some patients lack the mental initiative to cope with the situation; on the other hand the more extrovert types show a determination not to give in to the disease but their efforts to compel their muscles to work only serves to make the condition worse.

Once the syndrome is fully established the patient presents a multiplicity of symptoms but these can conveniently be discussed under three headings, namely:

1. Muscle Phenomena The unique form of muscle fatiguability described above is virtually a sheet-anchor in the diagnosis of Myalgic Encephalomyelitis and without it a diagnosis should not be made. I am informed of two families who are said to have all the conditions conforming to the clinical picture but lacking the muscle fatiguability. These cases should be very

carefully reviewed. It is quite common to find that muscle power is normal during a remission and in such cases tests for muscle power should be repeated after exercise.

In severe cases of M.E. muscle spasm and twitchings are a prominent feature and these give rise to acute muscle tenderness. In less severe cases muscle tenderness may not be so readily elicited but careful palpation of the trapezii and gastrocnemii (the muscle groups most commonly involved in M.E.) with the tip of the forefinger should enable the examiner to detect minute foci of exquisite tenderness. It is interesting to note that Dr. Garnet Simpson in Sydney, Australia (1986) without any prior knowledge of my writings devised the identical technique and found that detection of these foci 'will make the patient yelp'.

In the aftermath of the disease patients frequently complain of a tendency to 'fumble' with relatively simple manoeuvres such as turning a key in the lock or taking a cork out of a bottle.

2. Circulatory Impairment Most cases of M.E. have cold extremities and hypersensitivity to climatic change but the most striking illustration of this condition is the observation by relatives or friends of an ashen-grey facial pallor some 20 or 30 minutes before the patient complains of feeling ill.

3. Cerebral Dysfunction Impairment of memory,impairment of powers of concentration and emotional lability are the cardinal features. Inability to recall recent events, difficulty in completing a line of thought thus becoming 'tongue-tied' in the middle of a sentence and a strong inclination to use wrong words, saying 'door' when they mean 'table' or 'hot' when they mean to say 'cold' are all common deviations from normal cerebral function. Complete inability to comprehend a paragraph even after a second reading is very noticeable. These may be accompanied by bouts of uncontrollable weeping which proves acutely embarrassing to those of a stoical temperament who regard such an event as demeaning to their philosophy of life. Alterations of sleep rhythm and/or vivid dreams are common and these occur in patients with no previous experience of such phenomena. In a very tragic case in a young University student complete reversal of sleep rhythm led to suicide.

Frequency of micturition and hyperacusis are an almost invariable accompaniment of these cerebral features and together with episodic sweating and orthostatic tachycardia can only be attributed to involvement of the autonomic nervous system. Though less frequently encountered episodic sweating is a very striking event. The wife of one such case is a trained nurse and reports that her husband may wake around 4 a.m. lying in a pool of water and with a temperature of 94 to 95°F. I diagnosed this patient as a case of M.E. fifteen years ago; the sweating episodes still persist.

Variability and fluctuation of both symptoms and physical findings in the course of a day is a constant feature in the clinical picture of M.E.

The Chronicity of Myalgic Encephalomyelitis

The alarming tendency of M.E. sufferers to become chronic is the final distinguishing feature from all other forms of postviral fatigue syndrome. In a group of 150 members of the Association in the North of England 36 have had the disease for 10 years or more. Of 55 members in a small group in Surrey 29 have had the disease for 10 years or more; of these 4 have had the disease for over 20 years, 4 have had it for over 30 years and one for over 40 years. One member in the north country group has also had it for over 40 years. I am fully satisfied that at a conservative estimate 25% of victims of M.E. have had the disease for 10 years or more. Only Myalgic Encephalomyelitis has such a legacy.

The chronic case cf M.E. can take two different forms. In the first there is a recurring cycle of remission and relapse. In three doctors who contracted the infection between 1955 and 1958 the endless alternation of remission and relapse, still continues. In my experience a remission can last as long as 3 years. Marinacci and Von Hagen record one of seven years. The second form of chronic M.E. is more tragic in that no remission occurs. The patient lives a very restricted existence, unable to walk more than a short distance and that with considerable difficulty, unable to read for any length of time and in many cases subject to disturbance of sleep rhythm and/or vivid dreams and always the almost invariable frequency of micturition, hyperacusis and dizzy spells. A few of these chronic cases are compelled to sleep upright as a result of permanent weakness of the intercostal and abdominal recti musculature.

References
1. A.S.David, S.Wessely, A.J.Pelosi, (1988). BMJ. 1.696.
2. A.M.Ramsay, (1986). Postviral Fatigue Syndrome: The Saga of Royal Free Disease.' Pro-duced by Gower Medical Publishing for the Myalgic Encephalomyelitis Association.
3. G.Simpson. (1986). Med. J. Aust. Corr. 3.

Myalgic Encephalomyelitis Then and Now. AM Ramsay EG Dowsett. In.. The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome. Ed: BM Hyde, J Goldstein, P Levine. pub: The Nightingale Research Foundation, Ottawa, 1992

From this article:

"The illness, though similar to non-paralytic poliomyelitis in many clinical aspect, could clearly be distinguished and was diagnosed as Benign Myalgic Encephalomyelitis.  This name gives a clearer clinical description than many of the eponyms used previously (Iceland Disease, Akureyri's Disease, Epidemic Neuromyasthenia) or invented subsequently (Post viral syndrome, Chronic Fatigue Immune Dysfunction Syndrome).  These share the common disadvantage of obscuring the world-wide incidence or of trivializing the clinical severity of the illness."

Short definition of M.E.:

1. Generalised or localised muscle fatigue after minimal with prolonged recovery time.

2. Neurological disturbance, especially of cognitive, autonomic and sensory functions, often accompanied by marked emotional lability and sleep reversal.

3. Variable involvement of cardiac and other bodily systems.

4. An extended relapsing course with a tendency to chronicity.

5. Marked variability of symptoms both within and between episodes.

Icelandic Disease (Benign Myalgic Encephalomyelitis or Royal Free Disease). AM Ramsay EG Dowsett et al. BMJ May 1977:1350

RAMSAY AM. Encephalomyelitis simulating poliomyelitis.Public Health. 1957 Jun;71(3):98-112. PMID: 13432105 

Myalgic encephalomyelitis or what? AM Ramsay. Lancet 1988:100

Ramsay A. Epidemic neuromyasthenia: 1955-1978. Postgrad Med J 1978;54:718-21.

A record of fifty-three patients admitted to the Infectious Diseases Department of the Royal Free Hospital between April 1955 and September 1957 suffering from 'epidemic neuromyasthenia' establishes the fact that the condition was endemic in the general population before, during and after the outbreak among the staff of the hospital. A further outbreak occurred in North Finchley between 1964 and 1967 and sporadic new cases are still being encountered. The majority of these patients show evidence of involvement of the central and sympathetic nervous systems and the reticulo-endothelial system. Abnormal muscular fatigability is the dominant clinical feature and it is suggested that mitochondrial damage may provide an explanation for this phenomenon. Enzyme tests carried out in seven cases show pathologically high levels of lactic dehydrogenase, and glutamic oxalo-acetic transaminase. A follow-up study suggests that there is one group of patients that recovers completely or nearly completely, a second that recovers but is subject to relapses and a third that shows little or no recovery, these patients remaining incapacitated.

Infectious diseases. Ramsay AM.

Myalgic encephalomyelitis and postviral fatigue states: The saga of Royal Free Disease by Melvin Ramsay MD.

This book was published in the 1980's and summarises Ramsays three decades of work on Myalgic Encephalomyelitis.The book explains the difference between M.E. and post-viral fatigue states and that they do not represent the same illness.

Dr Byron Hyde MD writes:

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.

The book is available from the MEA for  £6.00. (all profits to MEA Ramsay Research Fund)

They write: Since 1990, The ME Association has been active in raising money for scientific research and during 1999, The ME Association's research fund was renamed in honour of our founding President, the late Dr Melvin Ramsay. Dr Ramsay worked tirelessly to obtain recognition for ME/CFS and his spirited determination to help people with ME/CFS has been a guiding light to many who follow in his footsteps.

(However, it is important to be aware that the MEA has been widely criticised of now actually working against everything Ramsay stood for with regards to M.E.: From the BMJ: [Some] accuse the association of drifting away from the purpose of founder members such as Dr Melvin Ramsay, who first proposed myalgic encephalomyelitis as a discrete physiological condition. Instead, they say, the association has come to accept a blurring of the distinction between ME and chronic fatigue syndrome and has adopted some of the arguments of that section of the medical establishment that believes the condition to be a somatisation disorder. As the BMJ went to press, Louie Ramsay, daughter of the late Dr Melvin Ramsay, announced that she was to resign as a patron of the association with immediate effect. She has also asked that all reference to the Ramsay family name be removed from the Ramsay Research Fund.  This text is available: http://bmj.bmjjournals.com/cgi/content/full/326/7401/1232-c )