‘Multiple sclerosis does not remit’ – call to change RRMS name to relapsing multiple sclerosis

‘Multiple sclerosis does not remit’ – call to change RRMS name to relapsing multiple sclerosis

MS does not remit and the out dated term causes many people to delay taking medication, says Dr Patricia Coyle, Founder and Director of Stony Brook’s MS Comprehensive Care Center.

Last week, at the CMSC Annual Meeting in Maryland, during a live-streamed presentation covered by Multiple Sclerosis News Today, she said: “MS doesn’t remit.”

Now, that is peculiar for a disease that is divided into different types, with the most people with MS having the Relapsing Remitting variety.

This week I caught up with Dr. Coyle and put this conundrum to her.

She explained: “RRMS is the major type and the one in which, between relapses or attacks, the patient appears to recover completely and is absolutely stable but it is wrong to say it stops.

“In reality, the disease has not stopped at all but continues to cause ongoing damage. It goes on silently damaging the tissue of the central nervous system.

Disease hides but does not remit

“Many people take this so-called remission as a sign that the now hidden and disease is doing no harm. So they decide not to take medications that would help protect them from the silent attack on their nervous systems,” said Dr. Coyle.

Asked if she would rename RRMS, she readily agreed that she would. “Relapsing Remitting MS is an old name from many years ago. It is a misnomer and is misleading. It really is time we changed it.”

To what, I asked. “Relapsing MS is a better title,” she said. And I think she is right. That name says that you have MS all the time but at certain times you will have relapses, when you will get worse. “This disease doesn’t burn out, it does not remit; let’s call it Relapsing MS,” she added.

But how do we achieve that change? It may be a long road but Dr Coyle suggests that it could start with the National MS Society in the USA. From there, I see it going to the International Federation (MSIF) and to MS societies and associations throughout the world.

Of course, it won’t happen overnight but wouldn’t it be great to see Relapsing MS become the new official and more correct name?

Multiple Sclerosis News Today also interviewed Dr. Coyle at the CMSC. You can watch the interview in its entirety here.

By Ian Franks

Multiple Sclerosis News Today

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The industry news information and articles are for informational purposes only, and are not intended to represent any trends, partnerships, commitments, or research of the Consortium of MS Centers or any of it's members in any way whatsoever, nor should any party be libel in any way to the reader or to any other person, firm or corporation reading this industry news section. Although the CMSC site includes links providing direct access to other Internet sites, CMSC takes no responsibility for the content or information contained on those other sites, and does not exert any editorial or other control over those other sites. CMSC is providing information and services on the Internet as a benefit and service in furtherance of CMSC's nonprofit and tax-exempt status. CMSC makes no representations about the suitability of this information and these services for any purpose.

Elizabeth Porco

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