Helen Alford

Myalgic encephalomyelitis (usually shortened to ME) is a syndrome that causes constant mental and physical fatigue that no amount of sleep or rest can help. Around 250,000 people have the condition in the UK. It tends to affect women more than men and onset is most common between the ages of 20-50, though anybody can be affected.

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Image Credit: Pexels

Symptoms of ME include fatigue, sleeping problems, pain in the muscle and joints, increased sensitivity to light and sound and poor short-term memory and concentration. Not all sufferers will have the same symptoms, however. Depending on the severity of a person’s symptoms, their quality of life can decrease quite significantly. A mild case of ME might require a person take days of work to recuperate. In severe cases, sufferers are often unable to carry out simple tasks like getting out of bed. Many patients – though not all – improve over time.

There’s no cure for ME, but there are different treatment options. However, what works for one person isn’t guaranteed to work on another – there is no universal treatment. For example, medication is often prescribed to treat symptoms of ME such as muscle pain. While this may help one individual, it could also cause side-effects in another.  Graded exercise therapy (GET) is sometimes advised to increase an ME sufferer’s physical endurance. However, a person with severe ME would undoubtedly struggle with this kind of treatment.  

ME has attracted huge amounts of controversy over the years. Until fairly recently, this was over whether it was a ‘real’ illness. Recorded cases of ME have been around since the 1930s, but it’s taken many organisations decades to identify it as a real thing. In fact, it was known as ‘yuppie flu’ for a long time. Sufferers were stigmatised as being lazy or work-shy. In the UK, it was only recognised as a chronic and treatable condition in 2002.

That’s not to say that there’s no longer any controversy surrounding ME. Today, there is disagreement over how to define the condition. Some doctors consider it a psychological problem while others believe the cause is physical. Scientists from Columbia University recently found physical evidence indicating that ME is biological rather than psychological. The research showed definitive changes to sufferer’s immune systems. Perhaps this will turn the tide for supporters of the psychological school of thought?  

What causes ME is also a topic of intense debate. New research has proposed a cautious link between improper functioning of the autonomic nervous system and ME, along with other conditions like Irritable Bowel Syndrome and fibromyalgia. There’s just not enough evidence yet to determine whether this link is causal or not, though.

In contrast, other research suggests that ME is caused by a change in the way the body makes energy. This model suggests that the cells of ME sufferers make energy from amino acids and fats, instead of sugar as the cells of a healthy person would. The body essentially switches from a high-yield source of energy to a low-yield source. Researchers in Norway have done some experiments exploring this. They grew myoblasts (embryonic cells that become muscle cells) in serums taken from severe-case ME patients. They found that these myoblasts had ‘increased mitochondrial respiration and excessive lactate secretion’. In other words, the cells were working harder to produce energy and creating lots of lactate. Excessive lactate build up in the muscles is linked to muscle pain, which is a common symptom of ME. This line of investigation is obviously of interest, and more research needs to be carried out to detect any potential links.

Really, every aspect of ME requires more research. Jose Montoya – a Stanford University professor and an expert on the condition – has said that with serious research and dedication, we could begin to understand what causes ME within a decade. He also hopes to find out what makes some people develop the illness while others, who experience the same potential causes, remain healthy.

While answers within a decade might be optimistic considering the continued controversy and disagreements surrounding the condition, Montoya’s words definitely offer some hope to sufferers.

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