We need to talk about Chronic Fatigue Syndrome

This has been a summer of dramatic medical breakthroughs. One of the foremost, announced only last week from the University of California, was that sufferers of Myalgic Encephalomyelitis (ME; often known as ‘Chronic Fatigue Syndrome’) have an identifiable chemical signature. This appears to create a cellular metabolic response not unlike that in animals which undergo hibernation to get through the winter.

Myalgic Encephalomyelitis is a condition whose predominant symptom is fatigue after mental or physical exertion (usually delayed effect). This is often accompanied by pain, muscle twitching, cognitive dysfunction, insomnia and mood swings. It is usually triggered by infection. It may affect up to 12,000 people in Northern Ireland.

The breakthrough is significant not only because it may give us some idea of how to treat ME and tackle its symptoms, but also because it provides firm proof of the existence of the condition. If further research backs up the results of these studies, there will no longer be any justification for denying it exists or for suggesting it is merely a symptom of something else.

That is why we need to talk about ME; and it is why we should seek to make Northern Ireland a leader in treating it! The National Institute for Clinical Excellence already has guidelines on ME for GPs and clinicians, although much of this came after those who currently work in our Health Service were trained. The guidance is clear that Health Professionals should be able to recognise the condition. There is significant research elsewhere in the UK, however, to show this is not always the case.

Furthermore, the guidelines are disputed. Recommendations on rest/sleep or dietary control are debated by researchers. The outcome is that too much of the focus in treating ME seems to be on controlling the symptoms, rather than the condition itself.

We have a specific opportunity in Northern Ireland because the Patient and Client Council has identified ME as one of its priorities, with a survey of patient experience due by the end of 2016. Another opportunity lies in the implementation of welfare reform; an inquiry by the UK Parliament identified significant gaps in care provision which could potentially be addressed during the reform process here. The ongoing overall reform process of Health and Social Care in Northern Ireland also gives us an opportunity to establish appropriate Clinical Networks to ensure as far as possible that the needs of those with the condition are met as soon as possible after they enter the system in primary care, rather than putting further strain on secondary provision for other symptoms.

If our aim is a truly world-class Health and Social Care Service, we should aim to be world leaders in some areas. This is an obvious example of where the conditions are right for us to do just that. Thousands of people across Northern Ireland will be incredibly grateful if we do!

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