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.
Research: Not just about drugs
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.
So, how do we, as people with MS, find out these newest research findings? I don’t subscribe to medical journals so I have to do exactly what you are doing now — reading trusted sources of information on the internet. And these days, once we read something that excites us, we want to talk to others and share that news. This might be with our doctors, but most of us don’t see the neurologist more than twice a year. Who wants to wait that long to talk about current research ideas?
There are online sources of current MS research news in many places. Here on Multiple Sclerosis News Today, you will find summaries of research results. MS Views and News, a patient-run nonprofit organization, keeps a lengthy archive list of MS research topics. The National MS Society does a good job of giving regular updates about research and even breaks down categories of interest. Tucked among the recent drug study updates are research results on the impact of high salt diet on MS, how people in wheelchairs are concerned with falls, and how concussions in childhood may have a link to adult-onset MS.
These are just a few examples of research news that can make a difference for us now, while we wait for the cure. But that will happen only if we are sharing these bits of research with others who might benefit.
Get out and talk research
If you’re like me and so many others, you are engaged in online forums. Those communities are filled with people who are reading and discussing MS research results. iConquerMS has such an online place for patients and caregivers through Smart Patients, and you are always welcome to join us there.
Whether it is on our forum or on some other patient community site, I encourage you to find a piece of research or a question of interest and talk about it with others who also have a personal interest in MS. When we are the messengers, we can spread news wide and far through online social media, and make a difference today.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.