When I first got ill, I didn’t want a serious illness. Hell no! Myalgic encephalomyelitis / ME, sounded bad, so I preferred to say to myself I had chronic fatigue syndrome / CFS, which sounded much less serious.

Even when I finally got a diagnosis after 18 months, I wanted to minimise the illness as much as possible in my mind, so I stuck with CFS for quite a while.

That helped me identify as a healthy person, which was important when starting out, and still is now.

But it also has serious difficulties, because it’s inaccurate and it trivialises the condition.

‘Chronic fatigue syndrome’ is a description of a symptom, i.e. fatigue. But ME isn’t defined and diagnosed by just this one symptom. The fatigue itself is necessary but not sufficient, as it’s also a symptom of a wide range of other conditions.

The most important diagnostic symptom for ME is post-exertional malaise (PEM), and there are other key symptoms, including brain fog and poor sleep. So chronic fatigue is inaccurate and misleading as a name. It’s like calling cancer ‘unusual lump syndrome’ (cancer can also have persistent fatigue as a symptom, making ‘chronic fatigue’ even less useful as a label).

The term ‘fatigue’ also has two meanings. The medical version - defined as extreme tiredness that isn’t improved by rest - is accurate to ME (and is a diagnostic criteria). But fatigue is also used in casual conversation to mean ‘very tired’, as well as in communications such as public service announcements about avoiding driving when fatigued. It’s the same way that people say ‘I’m starving’ when they actually mean ‘I’m very hungry’, and they aren’t literally starving.

This overlap makes it harder to explain to others the nature and seriousness of the condition. To the lay person, being tired is something we all have to deal with, so it’s not clear why it’s special with you, and raises doubts in peoples minds. Many conditions have had to deal with similar misunderstanding in the past (cancer being one of them), before there was widespread understanding.

The official name has changed over time, starting as myalgic encephalomyelitis (M.E.) in 1955 and being renamed chronic fatigue syndrome (CFS) by doctors during the 1980s, against the wishes of patients and other advocacy groups. Using ME has gradually come back into use over the last few decade, but it’s typical to see ME/CFS, with both labels used together.

My preferred term is ME, and I use the full ‘Myalgic Encephalomyelitis’ on occasion, and always in more formal or medical settings, such as when filling in forms asking about your conditions. I generally use ME or ME/CFS interchangeably in my writing though, as I want it to be accessible to people who prefer CFS as well as those who use ME.

I think the name we use for our illness is important, for accuracy, understanding and respect. As the ME/CFS field is still significantly under researched, there is also the potential for it to be fully renamed in future as our understanding increases.

The ME Association considers the term ‘encephalomyelitis’ to not be a pathologically proven explanation for what may be happening, and proposed the term ‘encephalopathy’, meaning a significant disorder of brain function. Myalgic Encephalopathy has been accepted by the UK’s National Institute for Health and Care Excellence (NICE) and others as an alternative name, and may well become the standard preferred term in future.

There’s also a high likelihood that ME as a category will be subdivided into specific types, with some of these potentially being reclassified as separate diseases. This would mean much more targeted research and treatment, a big boost for people with those specific conditions.

Using ME instead of CFS does help change attitudes and its worth some friction to help get this across. At the same time, it’s also important to understand that people with ME arrive into a world with little clear information and many competing voices, and in many cases are extremely isolated from the world as a result of their condition. So some people adopt ME, M.E., CFS, or ME/CFS as their preferred term, depending on their own situation and understanding.

It’s easy to get angry with others for not using our preferred phrasing, but attacking other people who are also extremely ill is deeply counterproductive. They are not your enemy, they’re just doing what they can in a difficult situation.

There’s a lot of understandable frustration around the slow pace of research, understanding and acceptance. But the momentum is slowly but surely building. If we can keep being clear about the condition we have, and how it affects us, then our collective understanding will improve over time.