2. What Is ME?

An overview of the illness ME and the main symptom of debilitating physical and mental exhaustion.


An overview of the illness ME and the main symptom of debilitating physical and mental exhaustion.


Hello again! Let’s start to look at what ME is?


Myalgic Encephalopathy is defined as a severe, chronic (long term), neurological (brain & central nervous system) illness, which has a huge impact on tens of thousands of people in the UK who have it (WHO World Health Organisation International Classification of Disease ICD-10:G93.3). Up to a quarter of a million people are thought to have a diagnosable “chronic fatigue syndrome” (The ME Association, 2011) - that’s as many as 1 out of every 250 people, around twice the number of people who have MS (multiple sclerosis). ME affects millions of people around the world, of all ages, even young children sometimes, and it’s the biggest cause of long-term absence from school in the UK. (ME accounts for over 50% of children & young people on long-term sick leave from school in UK - Study by TYMES Trust / Dowsett & Colby.) It’s most common in people between their mid-teens and their forties, though, and around twice as many women have it as men.


ME is a complex illness, and it’s not very well understood yet. I’ll talk about these things a little bit more later, but research shows that:


- it is a neurological illness - the brain and central nervous system is affected in measurable, physical ways, like inflammation, and low blood flow;


- that the autonomic nervous system doesn’t work properly;


- the body’s endocrine system, and all the hormones are affected, especially the so-called “hypothalamus - pituitary - adrenal axis”;


- muscles are affected and cannot produce energy properly at a cell level;


- the heart and circulation are affected, with low blood pressure and a very low volume of oxygenated blood flow around the body;


- the immune system doesn’t work properly, the lymphatic system is affected, and often the liver, and the digestive system;


- and the psychological "system" is often affected.


ME can be one of the most seriously debilitating illnesses there is. A lot of people who have ME have so little energy and are so ill, that they have to spend most of their day, every day, sitting or lying down, doing nothing. In severe cases, they are literally bed bound and not able even to lift a pen to write, or a comb to do their hair, some can’t even speak, may not be able to swallow food, and may need to be tube-fed. Others who are diagnosed with ME or Chronic Fatigue are still working or at school, but with reduced hours.


The symptoms can vary a lot from day to day, often without any warning or explanation - which can make planning ahead, or going to work, really difficult - or even meeting up with friends. In a week you might have a couple of really bad days, 2 or 3 average days, and a couple of days where you can actually do a little bit more - but still nowhere near as much as normal.


Saying that people with ME are just ‘tired all the time’ doesn’t even begin to cut it - being ill with ME means feeling as wretchedly ill and as tortuously, uselessly, feebly exhausted as it is humanly possible to feel, virtually all the time; it means physically not being able to do even a fraction of all the things you so desperately want to do; it means your brain and your memory and all your thinking is like it’s lost in some thick fog which you just can’t shake off; it means you’re sleeping loads but you’re still not feeling refreshed when you wake up; it means being painfully oversensitive to everything - and I mean, everything. Having ME can make you feel as ill as someone who’s got AIDS or someone who’s on chemotherapy, and it can be as debilitating as having a stroke or having MS.


The exhaustion with ME is like the whole body’s battery doesn’t work properly. Whatever you do, it can only ever charge up to a fraction of being fully charged ... and it takes far longer than normal to recharge even up to that level. And every time you do anything, it gets used up far more quickly than normal. So someone with ME would have to ‘ration’ their energy, balancing out activities that use up a bit more energy, against time when they’re ‘on standby’ (maybe chatting to a friend or watching TV), and when they’re actually resting (to try and re-charge their battery). And it would all get worse if they had just come down with another cold, or if the weather had just changed, or if there was any stress - or 101 other things that can affect someone with ME.


From my own experience, when my ME was bad, a whole day’s ‘high energy’ activities - on a “good day” - might be getting up and dressed, one 5-minute walk, cooking lunch (and probably resting halfway through), two or three 15-minute sessions of light housework (like dusting or washing up), playing the piano for 15 minutes, and checking emails for 10 minutes. My ‘low energy’ activities might be 1/2 hour of reading, and chatting to a friend on the ‘phone for up to an hour. The whole rest of the day, all I could do would be to lie down or sit down, perhaps with the radio or TV on quietly. Physically, I couldn’t run even 20 metres without feeling unbearably ill for 2 days afterwards.


But on top of all that exhaustion, there's a whole load of other really unpleasant and debilitating symptoms that people with ME can often have - although of course they do vary from person to person. I'll talk about them next time.