Chronic Fatigue Syndrome: Unexplained Exhaustion

CFS can be an intensely frustrating condition for both doctors and patients because there is no straightforward way to diagnose it. Much like irritable bowel syndrome (you may like to read Irritable Bowel Syndrome: Unexplained Abdominal Symptoms), CFS is diagnosed by excluding other causes of tiredness (see the article Tired All the Time?). Having excluded conditions such as anaemia, hypothyroidism, diabetes and nutritional deficiencies, among many others, a diagnosis of CFS can be made. This lack of a definitive test can cause a cycle of continual investigation as patients and their doctors search for something more straightforward to treat or try to reassure themselves that nothing sinister is being missed.

Like most medical conditions, there is a spectrum of severity for Chronic Fatigue Syndrome. At its worst, CFS can leave people bedbound for weeks at a time. For most suffers life is relatively normal but can feel like an endless uphill struggle. A pattern of worse periods and better periods is typical, with some people being able to identify triggers for their bad times whilst other are not. Eventually, many people do improve although the time scale for this is very variable.

Our understanding of the condition is imperfect to say the least. Put simply, we really don’t know what causes it.

In some cases, the condition seems to be triggered by a viral illness which is something that many sufferers of ‘long covid’ will recognise. For others, periods of tiredness are closely associated to stress and emotional upset. For many, there is no obvious cause and no obvious pattern to their condition. I feel sure that in the coming years our understanding of CFS will be much better but, for now, we are left trying to manage the consequences of the condition.

Just as diagnosis of Chronic Fatigue Syndrome is not straightforward, neither is treatment. Medication does not have an important role in making people feel better, the focus is much more around lifestyle and managing the fatigue. It is really important to maintain a healthy diet so that the situation isn’t compounded by nutritional deficiencies such as B12 or iron deficiency, and also to prevent conditions like diabetes developing which can also cause fatigue. Trying to improve the quality of sleep is invaluable and for this ‘sleep hygiene’ is recommended. Sleep hygiene is a whole topic in itself but, in a nutshell, it involves having good practices around sleep like having set times to go to bed and get up, avoiding caffeine in the afternoon and evening, and avoiding screens in the hour or so before sleep.

Cognitive Behavioural Therapy (a form of talking therapy) can help improve function, manage the distress caused by the fatigue condition, and help those for whom psychological distress is a clear trigger for bad periods.

‘Energy management’ is probably the bedrock of treatment for chronic fatigue. This means adapting life so that activity remains within the bounds of energy levels. This means recognising that some things will take longer to complete, or will need to be broken into chunks, or that undertaking a task may require a period of rest afterwards.

Graded exercise therapy was previously recommended but is now specifically advised against by the National Institute for Health and Care Excellence as many people found it worsened their condition. This form of therapy was a structured programme of increasing exercise levels over time. Although superficially appealing, it does not work.

If much of what above sounds a bit bleak, a diagnosis of Chronic Fatigue Syndrome can never-the-less be a positive thing. Knowing that this is what is happening allows people to start taking control of the situation. There is now a lot of high quality literature about CFS and how to cope with it, as well as support groups where the experiences of fellow sufferers can be shared. One big advantage is that, once the appropriate first line tests have come back normal, it can end the endless mill of fruitless medical investigations which in themselves are a source of discomfort, anxiety, and frustration.