The Impact of Myalgic Encephalomyelitis

Myalgic Encephalomyelitis (M.E) is a condition which until very recently, little was known. It is a debilitating disorder, which is characterised by chronic fatigue; this fatigue is not made easier by rest and is often made significantly worse by any kind of mental or physical exertion. The illness will in most cases considerably reduce the sufferers’ ability to cope with and carry out ‘normal’ day-to-day activities such as household tasks, social engagements and employment.

Due not only to the illness itself but also to the impact that the illness has on the sufferer psychologically it will also cause depression, mood swings and a general feeling of emotional fragility. Also known as Chronic Fatigue Syndrome (C.F.S) M.E is thought to affect 150,000 people in the U.K alone (M.E Association figures) the effects this condition has on sufferers can be massively varied, in extreme cases the sufferer can be rendered bed-ridden for significant periods of time, whilst others may appear to be able to function in a way that is associated with normality, but are in fact suffering from tiredness, constant pain and a feeling of permanent sickness.

The condition of M.E does, therefore, have a great impact not only on the sufferers but also on family members that provide care for relatives with M.E. There is also an impact on employers, and how they treat employees suffering from M.E. Many case histories show that in the early days before diagnosis employers are often sympathetic towards sick leave and sick pay. This sympathy can tend to dissolve as time passes by and the employee suffering from M.E/CFS becomes more and more of an inconvenience.

The term M.E was first used in an article in The Lancet in 1956 and came about as a result of work done by Dr Melvin Ramsey and Dr John Richardson the literal definition means inflammation (-itis) within the brain (encephalo-) and spinal cord (myelo-). The medical world is in constant debate over the legitimacy of this name to accurately describe the condition. This is because there is very little evidence to suggest that inflammation in the nervous system is actually taking place.

According to the medical advisor to the ME Association Dr Charles Shepherd ‘A far more likely explanation of what may be happening in the brain involves alteration to the levels of chemical transmitters, hormones such as cortisol, and blood flow’ (Shepherd p4.) Medics are agreed that it is important to find a more appropriate and relevant name for this disease and as recently as the Seattle meeting of the AACFS (American Association for CFS) in January 2001 it was once again debated whether or not ME was indeed the correct name for the disease. For these reasons many doctors prefer to use terms like CFS or Post Viral fatigue Syndrome (PVFS) when describing the illness.

Sufferers of the disease and many of the support groups that have been set up for sufferers, however feel, that the term CFS is inadequate. This according to Shepherd is due to the fact that ‘many people with ME/CFS state that fatigue is not their most troublesome or disabling symptom.’ (Shepherd p4) symptoms such as a constant flu-like condition which most ME/CFS sufferers have and also chronic pain in the soles of their feet and joints are considered to be much more disabling by many sufferers than the fatigue itself.

Symptoms and diagnosis of ME/CFS. Diagnosis of the disease is particularly problematic, as there are a number of other diseases that display similar symptoms to ME/CFS. These conditions include; fibromyalgia, myesthenia, MS and some auto-immune disorders such as rheumatoid arthritis, lupus and sjogren’s. An official medical diagnosis was offered in 1994 by a team of doctors led by Keiji Fukuda the results of their work were published in a paper entitled ‘The Chronic Fatigue Syndrome: A Comprehensive Approach to its Definition and Study.’ The following table (fig 1) outlines the criteria for diagnosis.

In addition to these official symptoms described in fig 1 below are other symptoms described by some sufferers but not all. These symptoms include: forgetfulness, this forgetfulness becomes worse when under stress of any kind, some sufferers prefer to describe this type of forgetfulness as mental fogginess. Ironically sleep disorders are also common to many ME/CFS sufferers, despite the constant feeling of fatigue it can be difficult to maintain any kind of lengthy sleep especially at night. Gastro-intestinal problems also affect ME/CFS sufferers this can include irritable bowel syndrome.

Due perhaps to the so-called ‘newness’ of ME/CFS as a recognised illness there is a polarisation of views on the nature of the illness. Whereas some doctors may see the signs and are quick to diagnose, others may be slightly more reticent to give a positive diagnosis of ME/CFS before examining other possibilities. The difficult nature of diagnosis and treatment of this illness often creates confusion for patients and a feeling of hopelessness, in addition to this is the fact that there is still some debate in the medical world as to whether or not the illness is ‘primarily psychiatric or is it a condition with an underlying organic basis’ (MacIntyre p85).

This has led to a questioning attitude within certain non-medical quarters of society such as the popular press i.e. ‘is this a real illness or all-in-the-mind?’ this societal attitude can go some way to creating a belief within the uninitiated that ME/CFS is a psuedo-illness and sufferers are guilty of malingering. This negative feeling only adds to the stress and pain of the condition itself; consider the following questions: how does this affect the sufferer? Is it possible that the psychological nature of this illness has a much greater impact on the sufferer than the physical symptoms described earlier? In order to begin to answer these questions it is important to appreciate that there are very real physical and psychological symptoms attached to ME/CFS. This does not however discount the fact that the illness is itself real.

An example of this is the depression that ME/CFS sufferers feel. Other chronic diseases also induce depression on sufferers, cancer patients almost always admit to bouts of severe depression when coming to terms with their illness. Other illnesses that have depression as a major symptomatic association are heart disease, MS, arthritis and Parkinson’s Disease yet the reality of these diseases are, quite rightly, never questioned.

It can be concluded that people who suffer from ME/CFS have to overcome the difficulty of firstly getting their illness accurately diagnosed then receiving correct advice on management of the disease. Whilst going through this potentially traumatic period they also suffer from a cynical society that can often refuse to believe in the validity of their claim to be ill, this impacts massively on the level of care that they will receive and also their ability to hold on to their employment status which can have financial implications for them.

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