ME (Myalgic Encephalomyelitis) or CFS (Chronic Fatigue Syndrome) does not lend itself easily to definition or diagnosis. There still remains a considerable amount of dispute as to what it is, how it should be defined and what causes it. However, it is increasingly being acknowledged as a debilitating and genuine illness after years of controversial debate. The illness is recognised by the World Health Organisation as a 'Disease of the Nervous System.'

Dr. Trudie Chandler, who runs a clinic for the condition at Kings College Hospital in London describes it as a syndrome characterised by "extreme exhaustion, muscle pain and a severe flu-like malaise" and other symptoms include difficulties with concentration and memory, loss of balance, digestive problems, visual disturbances, sleep disorders and mood swings.[1]

However, the terminology applied to fatigue can also cause some confusion. After all, we all know what 'fatigue' is, but it is very hard to define or measure. As one UK specialist states, "the term 'fatigue' is at once meaningful and imprecise "[2]). Studies show that it is common for between one-third to half the population to experience fatigue when they are run down, but this is very different to the debilitating fatigue experienced by ME/CFS sufferers. As Dr. Chandler states, "it's important not to confuse chronic fatigue with chronic fatigue syndrome, which is a complex condition caused by a combination of factors." [3]

Whilst ME/CFS is now increasingly accepted as a genuine and debilitating illness, there still remains a great deal of dispute over an appropriate name and definition for the condition, along with how many people suffer from the condition. This has been exacerbated by the history of the condition through the creation of an array of confusing different names and definitions for the illness around the world. This has led one author to it as “the disease of a thousand names.”[4]   For instance, the disease was called 'Icelandic disease' in Iceland, 'Royal Free Disease' in Britain, and 'Tapanui flu' in New Zealand.[5] These names generally stemmed from the geographical locations where the incidences occurred and the publicity they generated. However, as it became evident that most people developed the condition in isolation, a further range of names gained currency. These new names have tended to focus on the either the main cause (Myalgic Encephalomyelitis), the principal symptom (Chronic Fatigue Syndrome) or an aggregation of the two (Chronic Fatigue and Immune Dysfunction Syndrome or Post-Viral Fatigue Syndrome).

Around the World, the term M.E. (Myalgic Encephalomyelitis) has gained usage in the UK, Canada, Australia, New Zealand and areas of Europe. However, in the USA, it is mainly referred to as C.F.I.D.S (Chronic Fatigue and Immune Dysfunction Syndrome) - although for a period in the 1980's it was often called Chronic Epstein Barr (Mononucleosis) due to a believed link with the Epstein Barr virus that causes glandular fever. In the UK, the name ME became part of medical usage in 1956 when it was used in a medical journal, The Lancet, as a potential explanation of an incident at London's Royal Free Hospital that occurred the in 1955.

What does M.E. stand for and how useful is the term?

The 'Myalgic' part of the term refers to symptoms associated with muscles (i.e. fatigue, pain, twitching); whereas 'Encephalomyelitis' refers to brain symptoms (i.e. difficulties with speech, memory, concentration etc…) However, many are not happy with the term as they argue that it does not accurately describe the condition. This is because 'encephalomyelitis' actually means inflammation within the brain and spinal cord, and research in recent decades has cast doubt over whether this is the actual cause of M.E./C.F.S. Many in the medical profession feel that a more plausible explanation focusing on the brain should concentrate on variations in the levels of chemical transmitters, hormones such as cortisol, and blood flow. As a result, many Doctors and Scientists feel that the name M.E. should be dropped altogether.

During the 1980's, the term 'Chronic Fatigue Syndrome' became popular and is the preferred name of the medical profession today. By its very name, it does not refer to the cause, but stresses the long-term chronic nature of the illness and presumes that the major symptom of the condition is fatigue. However, this label has not received the same acceptance by support groups, as a great deal of sufferers regard the term CFS as being of little use and feel that it does not accurately describe the condition. This is principally because it fails to take into account the complex array of symptoms and disability that many sufferers experience. CFS, by solely referring to 'fatigue', focuses on just one symptom; and one which can be part of a whole range of physical and psychiatric conditions - thus ones which are not unique to M.E/C.F.S. For instance, a great number of sufferers say that 'fatigue' is not their primary or most debilitating symptom, citing problems such as chronic 'flu-like' malaise and cognitive/mental difficulty higher.[6] Furthermore, the term CFS is open to abuse through doctors mislabelling people under the 'umbrella' of CFS who are suffering from everyday 'tiredness and sickness' rather than the debilitating symptoms of ME/CFS.

The name 'Post-Viral Fatigue Syndrome' was adopted at the beginning of the 1980's in the UK as an alternative to ME. Its principal benefit lies in that it offers a more accurate description for those whose illness was triggered by an acute viral infection such as Glandular Fever. Nevertheless, its main weakness lies in its inability to account for those sufferers whose illness was linked to other factors (such as vaccinations or pesticides).

In the USA, the term 'Chronic Fatigue and Immune Dysfunction Syndrome' is often used. However, like other names associated with the condition, there are some in the medical profession who feel that this is not an appropriate term. This is because although many doctors agree that abnormalities in the body's immune response take place in ME/CFS, they feel that they are not sufficiently uniform or profound enough to warrant becoming part of the illnesses official name.

One of the best descriptions of the symptoms of M.E. comes from the work of Dr. Melvin Ramsay's book 'Postviral Fatigue Syndrome: the Saga of Royal Free Disease':

"Typically the illness follows an infection, usually a viral illness (which may be subclinical), in a previously fit and active person.  The main symptom of M.E. is severe fatigue and malaise following exercise, with weakness and pain in the muscles after use, and frequently visible muscle twitching.  This feature of muscle fatiguability is the dominant and most persistent feature of the disease, and in my opinion a diagnosis [of M.E.] should not be made without it.  The exhaustion typically comes on 24 to 48 hours afterwards, not during exercise. Fatigue can also result from intellectual exertion.

Then there are a variety of neurological (brain) symptoms: for example - impairment of temperature control and circulation with ashen-gray facial pallor and abnormal sweating; poor concentration and memory; sleep disturbances and emotional instability.

The two other typical features of M.E. are first the fluctuation of symptoms from day to day or within a day, together with remissions and flare-ups during a year; and secondly the tendency for the condition to persist for several years.

Other symptoms common in M.E. are: disturbances of sensation - oversensitivity to sound or light, tinnitus, abnormal pain, numbness or pins and needles; also blurred vision and problems with balance.  There is usually a total intolerance to alcohol, and digestive disturbances and food allergies are common."[7]    

Dr. Ramsay's description is acknowledged by many medical professionals as one of the best account of the clinical features of the condition.[8] [9]

It is important to note that each person seems to develop a slightly different collection of symptoms, so it is quite common for the severity and type of illness to vary.

Further Information

For further, more detailed information on primary and secondary symptoms, consult: Dr. A.M. Ramsay (1988) 'Postviral Fatigue Syndrome: The Saga of Royal Free Disease'; Dr. Charles Shepherd (1999) 'Living with M.E'; Dr. Anne Macintyre ' (1998) 'M.E./Chronic Fatigue Syndrome: A Practical Guide'; Dr. John Campling and Mrs. Frankie Campling (1998) 'Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome - M.E. Your Questions Answered'…. A number of these and others are available in the online book shop.

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