Myalgic Encephalomyelitis (ME)

 

Myalgic Encephalomyelitis is a neurological illness (it was identified as neurological by the World Health Organisation in 1969) that affects hundred of thousands of people in the UK - it was last estimated to be around 250,000 people. Add that figure to the number of sufferers worldwide, and that's a staggering number of people battling an illness which can be extremely debilitating and restricting, especially for someone who was previously completely fit and active (as the majority of ME sufferers once were).

 

Broken down, Myalgic Encephalomyelitis means:

– Myalgic= Muscle pain

– Encephalomyelitis= Brain/ spinal cord inflammation

 

It's hard to describe how ME affects any one person, purely because of the vast range of symptoms and how complex they are. However, what really sets ME apart from other illnesses (and what is most commonly associated with ME) is the debilitating level of complete and utter exhaustion that sufferers feel, which is completely different to what non-suffers would describe as exhaustion. This typically doesn't kick in fully until 24 or even 48 hours after an activity (known as PEM - Post Exertional Malaise), so that can make it extremely difficult for sufferers to judge their ability levels or predict how an activity will affect them.

 

The exhaustion, though, is far from the only symptom of ME. Sufferers also experience other debiliating symptoms, which include muscle and joint pain, headaches, trouble with temperature control, trouble with sleep, heart problems, balance problems, nausea, digestive problems, not being able to think, concentrate or remember things (commonly known as 'brain fog'), sensitivity to light, sound, touch or smell, food intolerances... all of which are brought on by physical and mental activity. 

 

Unfortunately there's no cure for ME and no magic pill to take - there are a range of strategies that people use to try and help them manage their ME, but what works for one person may not work for another. The best chance of recovery comes from an early diagnosis along with plenty of rest in the early stages of the illness - but all too often, this does not happen due to many doctors being nervous or underconfident about recognising or diagnosing ME, with some doctors not even believeing that it is a real illness at all. The majority of sufferers live by adopting a very restricted and carefully planned schedule in order to balance whatever activity they can manage (and 'activity' may mean something as simple as brushing your teeth in bed) with the need to rest and just generally cope with the magnitude of symptoms. This is often referred to as 'pacing', which again works for some people, but not for others. 

 

Lots of people (but not everyone) find that their illness is triggered by a virus of some kind, such as glandular fever or tonsillitis. It's generally split into four categories of overall severity; mild, moderate, severe and very severe. To put it into perspective, what is defined as 'mild' ME is generally thought to be a 50% loss of function compared to a non-sufferer. So in real terms, a mild sufferer may work full-time, but have a very limited, if any, social life and a very quiet family life. On the other end of the scale, people who have it very severely will spend months or years in bed unable to move and might even need to be tube fed. 

 

Unlike other illnesses, with ME you can't just push through it and battle on, although you certainly might try to. If you do that, it makes you a lot worse in the long run. You have good days and bad days, although good days are not being able to function normally by any means and to most people good days would not be good at all. It's very much an invisible illness- which means that often people may not understand or believe someone who is suffering.

 

You may also hear ME referred to as 'Chronic Fatigue Syndrome'. However, most sufferers refer to their illness as ME, as the idea of 'Chronic Fatigue Syndrome' suggests just tiredness when in reality, the illness is so much more.