By Jack Croxall

When I first contracted a mystery malady (exhaustion, muscle pain, brain fog etc) I trawled the internet, desperately trying to figure out what was wrong with me. Eventually, I stumbled upon the term “Myalgic Encephalomyelitis” (ME). However, once I’d been tested for Epstein Barr (the virus I read most commonly causes ME), and once that test came back positive, my doctor diagnosed me with something called chronic fatigue syndrome (CFS). To be honest, I didn’t really question it at the time because I was just so pleased to finally have an official diagnosis. But, since then, I have become increasingly confused as to what the difference, if any, between these two terms/illnesses actually is. In this article I’m going to do some investigating and try to get to the bottom of it.

So, probably best to start at the beginning. A little bit of research suggests that the term ME predates the term CFS. Apparently, early autopsies on patients with a painful, exhaustive disorder revealed inflammation of the brain and spinal cord. Thus: Myalgic (meaning muscle pain) Encephalomyel (meaning brain and spinal cord) itis (meaning inflammation of) was the term coined to describe the illness. Then, in 1984, a series of ME-like outbreaks in the US led to the formation of a committee to discuss what was happening. Online there is A LOT of criticism about this committee and the conclusions it came to. Accusations of rash judgments, use of “non-experts” and ignored evidence etc. But, whatever happened in that committee room, the result was the birth of a new term, “chronic fatigue syndrome”.

But are ME and CFS actually the same thing? The first thing to say about this question is that it is a hugely controversial issue and that many people get very upset and angry about it. My position is that I just want to know the truth one way or the other, so please bear that in mind as you read on. Anyway, rightly or wrongly, the majority of stuff I’ve read online says or at least implies that ME and CFS are the same thing. Whilst this seems to be the most common assertion, there are plenty who disagree. Many people say that ME and CFS can be separated by the type of symptoms sufferers face, cause, length of illness and many other factors too. Some opinion I read simply states that the US calls the condition CFS and everywhere else calls it ME. But why all the controversy?

Well, labels are important. One of the biggest criticisms of the term chronic fatigue syndrome is that it belittles the illness it’s meant to define. Critics argue that “fatigue” isn’t a strong enough word for the myriad of severe symptoms sufferers face, and that, to non-sufferers (including medical professionals), the term doesn’t sound particularly serious. Additionally, some people think that CFS is a label used by doctors for something they can’t properly diagnose; I don’t know what’s wrong with you so I’ll just call it CFS and tell you to go home. On the flip side of the argument, I’ve read myalgic encephalomyelitis described as too complicated a term, one that is difficult to understand and thus communicates very little to anyone who hears it.

I have sympathy with all of the arguments above. I’ve so often seen the term chronic fatigue syndrome not taken seriously and, frankly, I can’t even pronounce myalgic encephalomyelitis. On top of all that, I’m still not entirely clear whether ME and CFS are different words for the same thing or two completely different conditions/diagnoses. But what is the solution to all of this confusion? And do we need a new name for the disorders altogether? Let me know what you think in the comments section and let’s have a calm, respectful discussion about it.

Jack Croxall is an author/blogger living in Nottinghamshire, UK. He posts for Allies Everywhere monthly.

Books: https://www.amazon.com/Jack-Croxall/e/B00BBX48NK

Site/blog: http://jackcroxall.co.uk

Twitter: https://twitter.com/JackCroxall

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