Discovering MS Research

When talking about MS research, we tend to focus on drug development because improved therapies, and even the cure for MS, will come from pharmaceuticals. But what do we know about other MS research that doesn’t involve taking a pill or enduring an injection? I’m talking about those research studies that are looking at the activities of daily living (ADL) and quality of life (QoL) studies.

When new research results for a new drug comes out, we are bombarded with press releases and news headlines. After they are approved, we also see those drugs advertised in the various print publications we may get from MS advocacy organizations. Doctors also are hit with that same approach — the drug companies dispatch legions of their sales representatives to visit the neurologists and nurses who treat people with MS. Clinicians hear presentations on these drugs and how they are the newest way to help their patients.

But for every drug study being done through clinical trials, I am guessing there are hundreds of other MS studies taking place and producing results we rarely hear about. That brings up a question I recently discussed with my co-principal investigator for iConquerMS, the patient-centered multiple sclerosis research community. Once we have results from studies, how can we get that information back to people affected by MS so they can use the information to improve their lives?

Ideally, when a neurologist is sharing information with their patient, they should be talking about the ways a person’s current situation might be improved, without it involving a drug therapy. What are the latest results from studies on diet? How about information on the importance of vitamin D? Perhaps the latest exercise study gives tips on how to maintain upper limb function for people who are confined to a wheelchair. I could go on and on with this list of examples, but will stop there.

Only half in jest, we talked about how it would be lovely if we had a large number of sales representatives who could carry glossy brochures into an office and disseminate the latest findings of our studies and the results of the many other ADL and QoL studies being done. But there is no funding for that, so we have to rely on the old method of word of mouth, but in a contemporary form. We know the end users of this research knowledge also are the best and most efficient messengers.

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