How Much Does It Matter?
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I got an email recently from someone well up the chain of command at a multiple sclerosis (MS) patient advocacy organization. The purpose of the message was to take our community’s temperature on a new term floating around the MS research world: “smoldering MS.”
The concept behind the term is discussed at length in a recent professional paper. In brief, the authors challenge the prevailing belief that MS is an inflammatory disease of the central nervous system. Instead, they say, some other disease process — which is not yet defined — is driving MS progression.
Is ‘Smoldering’ Useful? Or Condescending?
While the specifics of this particular question — how I felt about the term “smoldering MS” — were attended to in a couple of replies, it later struck me that we’re back onto the subject of language and this disease.
Very early on in my writings about MS, I wrote a piece about political correctness in disability speak. Since then, I’ve gone back to the language we use (and don’t use) while trying to get on with the living part of living with an incurable chronic disease.
This recent email seemed like a different conversation. It was as much about messaging as anything else.
In this particular case, I got a peek behind the curtain of international MS collaborations.
My feeling was that a catchy term like “smoldering MS” felt a bit condescending to those of a certain age with this disease. The science behind what elevations in neurofilament light chain (NfL) levels might mean to people with the disease is massive. We don’t need to be talked down to with condescending language or terms like “smoldering.”
MS Needs to Have an International Language
Besides, when it comes to these sort of terms — I suspect that the first delineations of RRMS, SPMS, and PPMS may have been met with equal skepticism — we now have to consider the international audience that reads research. Many terms just don’t translate well — or translate at all — and, being that organizations such as the Consortium of Multiple Sclerosis Centers and MStranslate work to gather and transmit information internationally on the topic of MS research, getting a globally understandable name for something is more important than ever.
I have attended a number of MS research meetings over these past many years. Some were national events, while others were regional or fully international. How something is said at such gatherings is as important as what is discussed. That’s just part of an international discussion to move research forward.
In Simplifying Medical Terms, Do We Lose Meaning?
It brings to mind why Latin was used for so many centuries as an international language of science. But while effective for a closed society of researchers, it was not conducive to what we might now call open dialogue between patients, researchers, and healthcare professionals.
I suppose it goes back to something I wrote about being a professional patient and knowing the language when talking to our doctors. I’d rather stretch up to meet researchers where they are than have them talk down to us, because so much can be lost in translation.
Wishing you and your family the best of health.
Cheers,
Trevis
My new book, Living Well With Multiple Sclerosis, is available on Amazon. Follow me on the Life With MS Facebook page, and read more on Life With Multiple Sclerosis.
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