This is the first challenge – unless someone has had direct experience, or knows someone who has suffered, you get blank faces. And when that time comes, how do you explain something you don’t truly understand yourself, that has no formal diagnosis method or universally agreed way of treatment or recovery?
I’ve put together a short summary below to try and help with that process – whether describing to family, friends, colleagues, partners etc.
How can you describe it in a couple of sentences?
Myalgic Encephalomyelitis (M.E.) is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. It affects an estimated 250,000 people in the UK, and around 17 million people worldwide.
How do you get it?
There is no common, consistent cause for M.E however it seems you can broadly bucket them into two, or a combination of both:
- Infection – viral infections such as glandular fever/flu or bacterial ones such as pneumonia are common triggers
- Emotional/physical overexertion/stress – it’s common in athletes, overachievers & people that have encountered a particularly exhausting or stressful period
How’s it diagnosed?
Often it isn’t – it’s generally a process of elimination over a long period of time as at present there are no direct tests which identify it. This, I believe is a major contributing factor to the severity of M.E among people – they end up doing the wrong things for 6/12/18 months before identifying what’s wrong with them – doctors are not well equipped or knowledgeable enough to diagnose.
What’s it like? What are the symptoms?
When you tell most people you have M.E or CFS (Chronic Fatigue Syndrome), most people say ah so you’re just tired? Well yes, but probably not tired as you know it and that’s likely just one part of what you’re feeling. It’s hard to generalise as everyone has slightly different symptoms and this part will be your own story but they generally include three of four of the following:
- Extreme fatigue
- muscle or joint pain
- brain fog (problems thinking, remembering or concentrating)
- a sore throat or sore glands
- flu-like symptoms
- feeling dizzy or sick
- fast or irregular heartbeats
- sleep problems
How can you explain all that in a way that doesn’t send them to sleep?
In normal life, if you’re feeling really tired, you’ll sit on the sofa and watch tv as a bit of a rest period. Sadly, that doesn’t work with M.E. Everything you do comes from the same pot. Whilst you may be physically stationary, having to concentrate your brain on television or work can be just as taxing as physical exertion, as can being out socialising with friends. But that’s rather difficult to articulate.
The way I like to explain it to people is to imagine you wake up, look at your phone and go, fuck, it’s not been charging (everyone hates that!). You then have to last the day on what charge you have (depending on how severely you’re suffering). You could choose to spend all of that battery on your ‘friends’ app, or your ‘work app’ or your ‘physical activity app’ or a combination of the three. But they all affect your battery life!