What’s in a name? That which we call a rose
By any other name would smell as sweet.
Juliet did not care that Romeo’s surname was Montague; she saw beneath that meaningless convention. But Juliet was unique and she was thinking with her heart and not with her head – doing so can be dangerous, especially if you fail to recognise that to others, names do matter.
So why does the name matter? The Institute of Medicine (IOM) have this to say in their report:
“Conclusion: The committee agrees that the term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used as the name of this illness.”
With regard to ME, they say this:
“The committee…was concerned that the term “encephalomyelitis” is not well supported by the evidence and that there is substantial controversy surrounding the two versions of this name [the other being CFS]. Neither version conveys the full complexity of this disorder.”
They then tell us what they have come up with and why:
“the committee recommends that the disorder described in this report be named “systemic exertion intolerance disease” (SEID). “Systemic exertion intolerance” captures the fact that exertion of any sort—physical, cognitive, emotional—can adversely affect these patients in many organ systems and in many aspects of their lives. The committee intends for this name to convey the complexity and severity of this disorder.”
I have taken my time then, this past week, to contemplate this new name. I am not as young as I used to be and no longer fall in love easily and so unlike with Juliet there was no love at first sight. Nevertheless, my adoration for Systemic Exertion Intolerance Disease (SEID) has grown as time has past.
Most people seem to fall out with the word Exertion, but to me this has it’s benefits. It occurs to me that this name hurts those promoting exercise therapies as the answer to our illness precisely because this word is present. No bad thing. No bad thing at all.
Systemic is good, and Disease is good. Very good in fact. It says this disease is complex and serious and that it is real.
The word I dislike the most is Intolerance. The first thing that came to mind was a conversation I had with my gastroenterologist last year in which I explained that certain foods significantly increased the symptoms of my ulcerative colitis. She replied that food intolerances were just that, intolerances, and that it wasn’t much to worry about because the bigger problem she sees in some patients are food allergies. I found this irritating. I wasn’t claiming to have food allergies because I didn’t have them, but I sure had intolerances and they shouldn’t be written off just because they weren’t as serious as food allergies.
So when I saw this word, Intolerance, I thought that some may read that as a reaction but nothing too serious, which couldn’t be further from the truth of ME/CFS.
Nevertheless, taking the name as a whole, it is accurate. We do have Systemic Exertion Intolerance. But the disease is about more than that isn’t it? I think it is. I am ill even if I do not exert myself beyond breathing (which I find myself unwilling to give up).
But I started to consider the context a bit more. What’s the alternative?
Some people remain adamant that ME is better and should have been fully embraced. Whereas ME is unquestionably better than CFS, it is actually a pretty crumy name because it is not accurate. We can’t on the one hand cry out that we dont want poor science like PACE because it is not evidence-based while at the same time adopting a name without good scientific evidence to back it up.
I think a lot of people have become very attached to the ME label, having fought hard to retain it over the years, but that only made much sense in an environment where the only alternative was CFS.
I think people still wanting ME as the name need to think harder about that because it isn’t accurate – I’ve read most of the ME/CFS research and there just isn’t enough strong evidence to support the label. And that is one reason why it was easy to replace with CFS in the first place, because the ME label was on shaky ground.
And ask yourself – what has the ME label done for us? Sure we are fond of it, in comparison to CFS which most patients universally hate but is that enough? Is the history of the name worth much? I don’t see that it has all that much going for it.
I agree with the view that SEID does not fully encompass the disease, but it is certainly an accurate element of it. Is there a better name? I’ve yet to hear one – the only improvement I saw suggested was to change the word intolerance for dysfunction but that isn’t without its drawbacks.
I myself would very much like the immune system to be part of the name in some way, but I fail to come up with anything suitable. We have immune dysfunction, clearly, but it isn’t as simple as deficiency – a strong argument can be made for an over-, rather than an under-active immune state. Immune dysfunction disease obviously isn’t specific enough.
Taking a bit more context into account, the IOM report is very good. It blasts the abuse we’ve received as patients, degrades psychological explanations for the disease and draws attention to the dire need for more good quality biomedical research. And the jewel in the crown is its talk about definitions. It highlights the problems caused by polythetic diagnostic criteria such as Fukuda and talks of the importance not to focus on fatigue but to recognise and investigate other symptomatology such as orthostatic intolerance, pain, unrefreshing sleep, cognitive dysfunction and immune dysregulation, and in talking of anxiety and depression it refers to these as secondary symptoms (i.e. can be present but are not core to the pathology of the disease).
They propose a new diagnostic criteria for the disease:
Many advocates have been calling for the Canadian Consensus Criteria (CCC) to be adopted, a clear improvement on Fukuda, but it has its drawbacks, not least the reality that government has resisted its adoption for more than a decade – just like the name ME it is carrying baggage. And although the CCC or the International Case Criteria (ICC) were authored by some very well respected people, these definitions do not carry the credibility and influence that the IOM does.
Proposing this new definition – which joyously includes not only post exersional malaise (PEM) but also orthostatic intolerance and cognitive impairment – begins to make a lot of sense and there is no question that it is a big improvement on Fukuda. Coupled with the P2Ps recent suggestion that the Oxford definition should be retired, we are talking about a big leap forward here.
The name SEID is not perfect, but it is pretty good and I’ve seen no better suggestion. The IOM panel saw no better suggestion either and they say they considered more than 100 suggestions. Given their very good report, I am inclined to believe them and trust in their experience. They clearly want what we do: progress. And having the IOM as a partner in that regard is something I am more than happy to fall in love with.