Spoiler Alert: The answer is no.
I have Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, and I have had it since I first became ill with glandular fever just under a year ago. Friends often get confused with exactly what the term for my illness is, as it took a while for me to get properly diagnosed, but that’s the one we’re sticking with for now.
So what does CFS/ME actually mean?
CFS/ME is a chronic, often invisible, illness. It is not fully understood as to why or how it occurs, but it affects around 250 000 people in the UK alone. It has lots of different symptoms, but common ones include fatigue, headaches, muscle and joint ache, nausea, poor cognitive function (sometimes known as ‘brain fog’) non-restful sleep, and post-exertion malaise. My own illness tends to manifest itself in different parts of my body semi-randomly, meaning my symptoms can vary immensely, sometimes even day to day. We have a running joke in my house about my misbehaving body, as the symptoms are often strange and unpredictable!
Many sufferers prefer the term Myalgic Encephalomyelitis rather than Chronic Fatigue Syndrome, because the latter often leads people to the conclusion that the illness is simply the same as extreme tiredness. This misconception also encourages the belief that this tiredness can be solved in a way that a healthy person can solve it, through taking a nap for example. Rest is useful in helping to alleviate certain symptoms, but it is not the quick fix a healthy body might find it.
Does it mean the same thing for everyone?
CFS/ME varies from person to person, and as such is very difficult to describe. In order to be diagnosed with this illness, doctors test for anything else it could be (so no, I’m not anaemic or depressed, and yes they’ve checked, believe me!) This means that the diagnosis of CFS/ME is a diagnosis of exclusion and as such is a very broad one, covering a spectrum. It is widely believed to be a number of different medical conditions, which are simply characterised by shared symptoms. In fact, the term ‘syndrome’ actually refers to an illness characterised by symptoms rather than its underlying disease. In extreme cases this illness prevents people even being able to leave their beds, yet others with CFS/ME find that it has very little impact on their daily lives.
What can be done about it?
I mentioned earlier post-exertion malaise, which is when fatigue and other symptoms are heightened by an activity. This malaise can sometimes take a few days to kick in, and means sufferers rarely ‘get away’ with doing more than they should. This means that most sufferers practice pacing, a way of life that restricts activity levels to avoid the ‘boom and bust’ approach. Pacing avoids pushing yourself beyond your limits and facing the resulting backlash. It is thought to help with general recovery, but gets frustrating. It is just another way that practical advice given to healthy people cannot be applied – with CFS/ME you cannot and should not just keep pushing through, because it will have long-lasting implications.
There is no known cure for CFS/ME, and many seek alternative medicines such as herbal remedies, changes in diet or acupuncture to help with symptoms. Some doctors encourage graded exercise therapy, although this approach is currently highly debated.
I still don’t really understand…
Don’t worry, me neither – I’m still figuring most of this out. This is not in any way scientific, but instead an explanation that makes sense to me!
I like to think of it as if I had an empty jar, that I need to fill up with beads before I will get better, and that every day I am given 10 beads to get through the day. I will use up beads with every activity or expenditure of energy in that day. Thing is, it depends on how I’m feeling as to how many beads I will use. So, one day, it might take me 1 bead to get up, 1 to make and eat breakfast, 2 to shower, 1 to make and eat lunch, 3 to chat with a friend for an hour in the afternoon and 1 to make and eat dinner. That still leaves me 1 bead to put in the jar, meaning I haven’t worn myself too thin. However, another day it might take me twice as many beads to do any of those things, so in order to ensure I have some left I can’t do as much. It is entirely dependent on how my body is feeling that day. The only way around it would be to ‘borrow beads from the jar’ and ignore my limits, which means it will take longer to fill and thus longer to get better, especially if I do this regularly. It takes far less time to spiral backwards with CFS/ME than it does to build up strength, so this is rarely worth it.
How can I help someone with CFS/ME?
In my opinion, one of the best things you can do to help someone with CFS/ME is simply to reach out to them. Many sufferers have to spend hours of time alone, and this can be very isolating and can lead to poor self-worth or depression. Offering to chill out with someone can be a real comfort, they don’t have to use up their energy but are not alone, and you get to veg and watch a film! Everyday tasks like deciding what to eat or what to do take more effort and energy than you might think, and so having someone else make the effort even just to get in touch and check in can be so helpful.
Educating yourself about the illness is also invaluable – it can help you better understand what your friend is going through, and help them to feel less alone. Don’t be afraid to ask questions!
You can find out more here: http://www.meassociation.org.uk/about/what-is-mecfs/