Saturday, May 25, 2013


This condition that I deal with every day, the one I have lived with for more than fifteen years, is one that doesn't even have an agreed upon title for itself.

Its official title is Chronic Fatigue Syndrome (CFS). It has been named as such by various medical authorities in the US and in Europe.

Many sufferers prefer the term ME. ME stands for Myalgic Encephalomyelitis. Myalgic refers to myalgia, which is basically muscle pain. Encephalomyelitis is another way of saying "inflammation of the brain and spinal cord".

I suspect that the reason many people choose to use this term is that Myalgic Encephalomyelitis sounds much more medical and serious than Chronic Fatigue Syndrome. It suggests a real condition, and this is what sufferers want above all, for it to be acknowledged as a real, serious, physical illness.

It is also true that CFS is favoured by the group who insist on seeing the illness as a psychiatric condition, and this does not endear this title to people who are fighting against this view of the illness.

People get very annoyed when discussing this matter. There is a way of thinking that sees the title Chronic Fatigue Syndrome as somehow disrespectful, that it implies that all we are is tired. ME, it is said, is closer to describing the severity and complexity of the illness.

Others maintain that CFS does exist, but that it is different to ME, maybe less severe, more easily treatable. I've read a number of discussions on Facebook pages, and on forums about this, and it does get pretty heated. People feel strongly about this topic.

My opinion is that ME is a terrible name for this condition in general. Moreover, it is utterly undescriptive of my particular situation. I don't have any muscle pain, and there are many other people who don't either. And there is no evidence to suggest that my brain and spinal cord - or anyone's brain and spinal cord - is inflamed.

The term ME gives almost no information about what this condition is like, describes only one symptom that is not even universal, and is misleading when it describes a physical effect that doesn't even exist.

So ME may sound more impressive, yet this doesn't make it more accurate. And it is important to be accurate. Chronic fatigue syndrome is at least true. People with this condition do have chronic fatigue. The term CFS may be inadequate, it may leave out a whole world of other symptoms, but at least it is not misleading. Myalgic Encephalomyelitis certainly is.

My preference would be for CFIDS - Chronic Fatigue and Immune Deficiency (or Dysfunction) Syndrome. It is used a little in the US, though used to be used more.

CFIDS has the advantage of mentioning the immune system, which is a key component in causing symptoms, as well as the main symptom, fatigue. It certainly comes closer to describing my particular situation than any of the previous titles.

I suppose, though, that it is too much of a mouthful - even in the abbreviated version - to be a practical way of describing the condition. We need a title to be concise and easily explainable.

The truth is that there is no perfect way of naming this illness. There is no way of summing up the complexity and seriousness of what it's like to live with it, while also being accurate as to causes and dysfunction and symptoms. The best we can hope for is an approximation. CFS is unsatisfactory, but in my opinion it is better than ME, which describes nothing.

Until we understand the causes and mechanisms of the disease a little better we seem to be stuck with this unwieldy mish-mash of CFS/ME. The problem is that we lack any better way of describing the condition because we lack a basic understanding of what is behind it. Once that comes, let's hope we can get to a better way of naming what we have.


  1. Morning :)

    Personally, I cannot help but ask if all the time and energy some have taken getting absorbed in discussions about nomenclature couldn't be better spent elsewhere.

    I don't especially have a 'dog in this fight' I don't care what my disease is called based on current preferences or how it is categorised; but others clearly do.

    Here's a recent article from Phoenix Rising. It's become a 'hot issue' once again. I can't count the number of times this has cropped up over my 14 year history. It wouldn't be so bad if new criteria were prompted by medical breakthroughs!

    Anyway, you might like to have a read about this 'initiative' and check out particularly Ember's more recent replies on behalf of the ICC.

    Mind you it now all makes me want to sleep I am afraid ;)

  2. Thanks for your comment, Jack, and for the link.
    I tend to agree with you, the debate about naming and definition can wreck my head, when I begin to get into it. I do think that an accurate title is important, but the passion that some people devote to the debate does seem misplaced, at times.
    I still maintain, though, that ME is a terrible name for the condition.

  3. Sorry Charlie. Despite what Simon Wesseley tells you we don't all have "fatigue".

    I have an immunological and neurological disorder that results in a significant reduction of physical activity. I am not "tired". "CFS" does sound appropriate for your condition. As you seem to be indicating "fatigue" is your main symptom so it's not surprising you're happy with "CFS".

    ME may not be appropriate either. And yes I have had MRI, spinal taps, etc indicating inflammation of the spinal cord and brain.

    1. First of all, I never said I was "happy" with CFS as a name for the condition. In fact my actual words were "CFS is unsatisfactory". This is very clear in my blog post.

      Also, I'm a little unclear on what "an immunological and neurological disorder that results in a significant reduction of physical activity" actually means, if it is not related to fatigue. It sounds like you are splitting hairs here, quibbling over the normal meaning of the term "fatigue".

      Moreover, if, as you say, you have had MRI and spinal taps indicating inflammation, you are in a tiny minority of those who have been diagnosed with "ME". I know a number of sufferers, and none of them have had these tests or this confirmation. I repeat that Encephalomyelitis is an utterly misleading term to use here.

      Lastly, who the hell is Charlie? :-)

    2. TCS, "Sorry, Charlie" is a reference to the catchphrase from an old and long-running advertising campaign for a brand of tuna fish in the States. -Jocelyn

    3. Reduction in physical activity means unable to do aerobic activity. According to my "Fitbit" I walk on average nearly 12,000 steps a day but am unable to do aerobic activity. My challenges are not "fatigue" related. So yes when I see PACE studies and the Oxford criteria based entirely on "fatigue" it's hard to see that I am part of the same patient population. In fact, in the UK I probably couldn't be diagnosed with "CFS" as I walk 6-8 miles a day.

      So from my perspective "fatigue" is the utterly misleading term. And unlike many this is not a self-assessment but a diagnosis made by Natelson, Komaroff and Klimas.

      The term is not the major problem but the various and sundry criteria used for assessment. Clearly you are happy with the situation otherwise you wouldn't be trying to defend the status quo.

      At least in the US when people speak of ME, my take is that they want a criteria like the ICC to be used which doesn't make "fatigue" a primary issue.

    4. The truth is that we are probably talking about a number of different conditions or syndromes, with vaguely similar symptoms, that have been grouped together because the medical community had no better idea of what to do with them.

      I must admit that I still have trouble understanding where you, Ack, fit in to the spectrum of ME. I have certainly never met anyone who walks 6-8 miles a day with ME, and I think most people I know with this condition would find it difficult to identify with you. I still struggle to grasp exactly what you are talking about when you say you have ME but no fatigue.

    5. Thanks for "Charlie" clarification, nopostergirl, did that ad really sell tuna? I would have thought that after giving the tuna a name and personality, and making him in to a cute cartoon, it would have put people off actually consuming him!

  4. I would quibble with the idea that there's no evidence of brain or spinal cord inflammation. Most notably (in terms of high profileness), severe ME patient Sophia Mirza had dorsal root ganglionitis on autopsy. There are all sorts of interleukin responses - upregulated, downregulated - which are indication of inflammation and are easier to test than going via MRI or spinal tap. (I've had a fair bit of that done myself.) And a few years ago at the International Science Symposium on ME, there were a bunch of presentations that happened to connect to inflammation. -Jocelyn

    1. Thanks for the link. There is certainly some evidence of some inflammation, in some patients, that is true. But to use Encephalomyelitis in the title of an illness you need more than that. It is given a far more prominent position in explaining the condition than it merits. Using it as part of the title of the condition suggests that encephalomyelitis is either a major symptom, or a major cause of the disease, and this simply has not been confirmed. It is all tentative speculation at this stage.

      Imagine a conversation between me and an acquaintance, if I say that I have ME.
      Acquaintance: What does ME stand for?
      Me: Myalgic Encephalomyelitis.
      Acq.: Wow, what does that mean?
      Me: Myalgic is muscle pain. Encephalomyelitis is inflammation of the brain and spinal cord.
      Acq: Ah, ok. So you have muscle pain?
      Me: Eh, no.
      Acq: Ok, so you have an inflamed brain and spinal cord?
      Me: Eh, maybe, who knows? I suppose it's possible.
      Acq: Are you sure you have this ME, then?

      Many people diagnosed with ME could have the same conversation. ME may be an appropriate title for some people, but as a global title for the illness, I still maintain it is very inadequate and misleading.
      (Besides, it is a pain to type. It has 24 letters!)

    2. And I can barely say it!! :)