Between Hype and Hope: The Language of MS Research

Have you ever listened — really listened — to a broadcast weather forecaster’s use of ambiguous language?

“Mostly sunny with a chance of scattered rain showers.”

“Morning clouds and fog clearing as the morning progresses, except in areas where it will persist.”

What the hell does any of that even mean to the guy who wants to wash his car, or the woman thinking about setting some flowers in the raised beds?

Perplexing Word Choices

I feel that way, sometimes, when I read or report on multiple sclerosis medical research. The analogy of forecasting the weather is strong when it comes to “possible long-term outcomes,” “more research required,” and “standard deviation of residuals.”

The same can be said of reporting on such research. I recently read reports about a study published in JAMA on the effects of high-dose vitamin D therapy on early-stage MS.

The reporting on the study used two terms I’d not seen before in this vein — “tames” and “curbs” — in reference to successful use of high doses of vitamin D administered early on in the course of MS (specifically, at the stage of clinically isolated syndrome).

The research showed that only 60 percent of patients exhibited an occurrence of a relapse or magnetic resonance imaging activity (new or contrast-enhancing lesions) over 24 months when they were given high-dose cholecalciferol (a dietary supplement that is used to treat vitamin D deficiency), while 74 percent of patients with CIS who were given placebo showed disease activity or progression.

Great news for the next generation of MS, but nowhere in the research was “tame” or “curb” ever mentioned.

What researchers did write was an old favorite of mine: “These results warrant further investigation.”

I know that science means that our understanding changes as new data is presented and tested. We all know that some things work better for one person than another. I just wish that we could find common ground in between the hype and the hope of media and research.

Causation vs. Correlation

Another concept those of us living with MS have to learn is the difference (and similarity) between correlation and causation. Just because two things happen in correlation doesn’t necessarily mean that one causes the other.

This can be particularly important to keep in mind when we look at natural history studies — observational studies intended to track the course of the disease — which can mine existing data to ascertain possible contributing factors of a disease.

One such study, recently published in the Journal of Neurology, Neurosurgery & Psychiatry, linked the use of oral contraceptives by women before their diagnosis with MS to a lower risk of progression independent of relapse activity (PIRA), or disability that accumulates in the absence of MS relapses.

Those researchers found that “[p]atients who used oral contraceptives before MS diagnosis had a 26 percent lower risk of PIRA and a delayed median time to the first PIRA event (9.94 vs. 7.5 years).”

Even with what seems like fairly conclusive evidence, the researchers concluded, “This study suggests that early oral contraceptives may delay future disability progression, supporting the importance of sex hormones in MS and prompting further prospective investigations on oral contraceptives to slow disease progression.”

The italics are mine to emphasize my point.

The Importance of Educating Ourselves

To me this is another excellent example of the importance of educating ourselves to be good (if not “professional”) patients. I have found it helpful to understand (or partly understand) the science that is reported in these studies rather than relying on the editorializing and reporting or even on the conclusions that researchers draw, because even those must be tempered.

So, here’s to educating ourselves, learning how to read what is and isn’t being written, and to finding that fine line between hype and hope.

Wishing you and your family the best of health.

Cheers,

Trevis