Short answers to hard questions about Chronic Fatigue Syndrome (CFS)/Myalgic Encephalopathy (ME)

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With the news of a new therapy being trialled to treat children with ME, I wanted to write a blog about this condition. It’s a personal one for me, because ME affected my family a lot while I was growing up. Watching a close family member suffering with a mystery undiagnosed condition, thinking they’d “gone mad” because nobody could explain why they were ill, was extremely difficult. It brings me great joy to see the condition is now fully recognised, and fantastic research is being done into how it develops, what exactly it is, and how it can be treated.

In children a new platform of online therapy has been developed, consisting of intensive cognitive behavioural therapy, sleep counselling, and therapy sessions to adjust activity levels and teach children how to live with the condition. Trials of the scheme in the Netherlands showed that 63% of children receiving the therapy recovered after six months, compared with only 8% that didn’t. After such an amazing response, Bristol University decided to run a trial in 734 children to see whether the therapy should be offered on the NHS.

What is CFS/ME?

CFS or ME causes a patient to feel persistent tiredness that prevents them from being able to live their normal lives. It can make working and socialising impossible, and can persist for many years.

What causes CFS/ME?

Well let’s start with the tricky one. Experts have now agreed on various different things that can trigger ME, but we don’t know what then causes it to become chronic. The main two theories focus on this switch either being a psychological/behavioural problem, or a physical one. There is also a strong argument that you can’t really separate the two because it is becoming more and more obvious that your mental and physical health are closely entwined. ME usually presents after a viral infection, which suggests that the immune system may be playing a role in the onset of the syndrome. As the condition is so variable, it seems most likely that ME/CFS is actually a number of different conditions with similar symptoms.

Who is at risk of CFS/ME?

Anyone can get CFS, though women are more often affected than men. Currently it is thought that around 250,000 people are suffering with ME.

How could CFS affect me?

In some people the condition is fairly mild, but in others the effects can be life changing. Children can have their education disrupted, and adults may be unable to work for long periods of time.  Complete recovery can happen, especially in children and young people. The majority of people tend to follow a pattern where their health varies, with periods of stress, illness, temperature extremes or operations making the symptoms of CFS recur.

Can CFS/ME be treated?

There is no single treatment for CFS/ME. The reason the new trial is so exciting is because, in children, a two thirds cure rate is unprecedented. An early diagnosis with sufficient rest in the initial phase, and rest during any flare ups is the best treatment available at the current time.