What is CFS/ME?
It is a common organic illness which significantly limits people compared to their pre-illness capacity. It is characterised by profound, persistent, disabling physical and mental exhaustion, which is not relieved by rest or by sleep, and is accompanied by a wide range of other symptoms.
People retain an intact sense of what they would expect and want to do but can’t do it in the way they did pre-illness. This wanting and expecting to return to normal functioning is at odds with what, even in the mild form of CFS/ME, is a seriously limiting illness.
Everybody understands and experiences tiredness that is usually resolved by one or several good nights sleep. In this illness the fatigue is of a new and unusual nature, unlike the ‘being tired’ that has been previously experienced when well. Typically, as with the wide range of other symptoms that are noted, it increases after exertion that is above and beyond what is currently manageable. This post- exertional effect typically occurs as the term implies, after the exertion, and may be felt immediately, some hours or even several days later. People often comment on how if an activity is predominantly physical the subsequent fatigue is more likely to be mental and vice versa.
Everything that a person does involves activity and effort. This can prove confusing when, for example, they do something very enjoyable for them and are significantly worse afterwards. The main areas of effort include cognitive, physical, social and emotional. In an ill person, effort is also expended in getting better.
The range and varying intensity of the other symptoms that people experience is wide, and significantly limiting, as the person’s whole system is affected i.e. body and brain.
Who is affected by CFS/ME?
The illness affects all ages, from young children to the elderly, and though more common in women and Caucasians, it does affect men and other racial groups. It is classified by the World Health Organisation as a neurological disease. It is thought that many of the symptoms indicate a change in how the nervous system and immune system are responding which would explain the apparent ‘whole system ’effect.
What are the symptons?
Some of the significant symptoms are pain (muscle, joint and nerve), sleep change ( difficulties with going to sleep, staying asleep, sleeping longer than normal , sleep cycle that moves from the pre-illness pattern, and un-refreshing sleep ), headache , recurrent sore/dry throat and eyes, temperature regulation disturbance, changes in bowel and bladder function, increased sensitivity or decreased tolerance to substances e.g. alcohol, certain foods, medicine; and stimuli e.g. sound, light, taste, touch, smell, and movement . Peculiar sensations and/or numbness can occur sporadically, particularly in the hands, feet and scalp.
The whole process of spoken and written language, numeracy, thinking and memory is affected. This can cause much distress for the person with the illness as it affects everything they do and competencies that would normally be taken for granted.
Mood change is also noted, although this doesn’t affect every person with the illness. This is often part of the post- exertional effect and resolves as the person stabilises. It can also occur, as with other long term illnesses, as a response to the person’s changed circumstances and illness. Some people may have had a prior depressive/anxiety disorder which in turn may be exacerbated by this illness.
It is useful to know when the person last considered themselves normally well. People can become ill quickly but more often there is a pattern of gradual deterioration with the person adapting to their reduction in capacity until they can’t do that anymore.
It is very important that the person has a detailed medical examination by a doctor to exclude any other treatable condition. Continued monitoring of the patient is important in relation to any new symptoms which may or may not be part of the illness profile.