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 101F. 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 95F. 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.

This article comes from a leaflet, which was produced by the M.E. Association around late 1980s early 1990s.

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