Health Care

By Anne Mills

Chronic Fatigue Syndrome (CFS, CFIDS, ME) is an insidious, frightening illness that causes profound disruptions to life. It drains energy, intelligence, memory and personality. It is absolute exhaustion.

CFS brings great difficulties. It has no known cause, is effectively incurable and there is not even an established approach to treatment. It is maddeningly unpredictable in its daily severity, its set of symptoms as well as their manifestation.

This illness also generally deeply affects the lives of those closest to the sufferer as it steals that someone away from them – the person they knew either disappears or is, at the least, quite changed. Physical and emotional burdens are placed upon them as well as the sufferer.

CFS is not terminal or directly life threatening, but this does not diminish its devastating effects. It is usually not visible, but this does not mean it is trivial. It can be difficult to determine, but this does not make it any less sinister. It is regarded as a serious illness because it is an impediment to leading a ‘normal’ life.

This is no over-dramatisation of a condition. The fact is, CFS is characterised by a lack of appreciation of its devastating effects and is therefore often trivialised.

CFS is typically misunderstood as just ’tiredness’, however CFS is very, very different to tiredness or fatigue experienced at some time by most people. It is more accurately described as an energy issue - no energy, extreme exhaustion.

However, fatigue and exhaustion are not the sum of CFS – it encompasses a whole range of other ailments or conditions. It amounts to experiencing several illnesses either all at once or progressively, with no apparent pattern or enough meaning to enable accurate prognosis by those qualified to reach some conclusions. That the illness varies with each individual complicates matters further.

Possibly the most frustrating, and lesser known, feature of CFS is the fatigue of the mind often referred to as ‘brain fog’. Cognitive malfunction and memory loss are the most prevalent signs that something is terribly amiss with the brain. The powers of comprehension, deduction and reasoning vanish - then the sufferer cannot remember anything anyway! Being rendered mute when all vocabulary disappears leads people to question the unfortunate sufferer’s sanity.

An aspect that always seems to puzzle people is that sufferers often look well. This is the invisibility of CFS – just because the outside looks fine, it is not always an accurate indication of what is/is not going on inside!

At times when energy levels may be a little higher, sufferers can ‘perform’ much better and therefore may be judged as being ‘better’. This is another totally exasperating facet of CFS – the illness constantly fluctuates, both in severity and characteristics. One day may represent total physical collapse, the next with a little more energy but afflicted with ‘brain fog’, the following unable to get up due to pain, intestinal upset or a night of very little sleep, then a day when there is sufficient energy to take a short walk. It never leaves, though.

Chronic in its name helps to describe the relentlessness of CFS – as yet there is no cure and it can continue forever. This sounds bleak and for some their lives remain exceedingly bleak. The more fortunate are able to manage the illness and gain some gradual improvement so they are able to lead a viable life. Some actually achieve a level of recovery, but live with the threat of any or all symptoms returning if they do not maintain a carefully controlled lifestyle.

Some emotional instability is not surprising once the depths of this illness are realised. Learning to accept CFS and deal with any resultant emotions is difficult enough, without having thought and reasoning functions not working. It’s like waging war on a number of fronts without any prior knowledge of how to approach a conflict, without any intelligence (literally!), no idea of acquiring weapons and no troops. Little wonder sufferers become agitated or depressed – or both.

Imagine waking up each day with flu…
every day, every week, every month… year after year…

Then, on top of the flu, you are sleep deprived…

Remember how it feels after partying hard or studying for a couple of days and nights without sleeping,
or when a baby or something else has kept you awake for nights on end…