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Experts Convened by the National MS Society to Set Wellness Research Priorities

December 9, 2015

What does the word “wellness” really mean? This was the question posed at the start of a National MS Society-convened meeting in late October 2015 focused on prioritizing research efforts to fill gaps in our understanding of things people can do to live their best lives with MS. The assembled rehabilitation researchers, clinicians, a person with MS, and Society staff agreed on an official definition of wellness, which loosely translates into self-directed lifestyles, activities and behaviors that individuals choose and practice themselves to improve their health and how they feel about themselves.
 
The meeting was a natural follow-on to last November’s Wellness Strategy Meeting (.pdf) where the need for additional research became clear. In preparation for that meeting, the organizers identified questions and common themes of concern for people with MS based on comments in social media, calls to the Society’s Information Resource Center and surveys. What emerged led to the focus on diet, emotional health and physical activity.
 
In the Driver’s Seat
“People with MS want wellness strategies so they can feel a sense of control,” noted Kathy Costello, MS, ANP-BC, MSCN, who as the Society’s Vice President, Healthcare Access is leading the Wellness Initiative and work group.
 
She explained that ongoing work through the wellness initiative focuses on developing a unified plan to comprehensively address the need for high quality wellness focused research, information, resources and support so that people with MS can make positive lifestyle decisions that contribute to their individual wellness goals. She noted that plans are underway for enhancing the Society’s website to improve access to wellness information.
 
“As a person living with MS, I want to know what I need to do now to retain my abilities going forward,” noted Kathy Smith, MA, a Society consultant on special research initiatives who helped organize the meeting.
 
Evolving Research
The National MS Society has been funding wellness research for decades, said Nicholas LaRocca, PhD, Vice President, Healthcare Delivery and Policy at the Society. He said that right now the Society is funding wellness research projects totaling more than $15 million in multi-year commitments. What’s different now, he said, is “having a specific emphasis on wellness research offers the opportunity to identify gaps and create a more coordinated approach to addressing these gaps, and in accordance to what people with MS have identified are the most crucial issues.”
 
Participants noted that while the Internet is full of wellness recommendations and anecdotes, there is a lack of well-studied strategies for which people with MS can have certainty about their impacts. Presenters at the 2014 Wellness Strategy Meeting had highlighted the fact that there have been too few clinical trials of wellness interventions, such as diets and exercise, specific for people with MS. 
 
“It is naïve to say that if something works with one population it will work in MS -- that’s a dangerous assumption, since there are lots of things about MS that are not the same as other populations,” noted Rob Motl, PhD (University of Illinois, Urbana-Champaign), an MS researcher whose work focuses on the measurement of the benefits of exercise and physical activity.
 
An important question highlighted by several participants is whether exercise, diet or other wellness approaches are “disease-modifying” – can they change the course and activity of MS?
 
Focus Area: Diet
Ellen Mowry, MD (Johns Hopkins University), an MS neurologist whose research focuses on environmental factors that may influence MS, echoed the need for MS-specific diet research. She gave the example of beta carotene, a supplement thought to reduce the risk of heart disease in the general population, but that may actually increase the risk of death from heart disease in people who are at higher risk of heart problems. “That’s why it’s critical to study interventions in the MS population itself,” she said. She recently received a Harry Weaver Neuroscience Scholar Award from the National MS Society and plans to conduct a small trial of a diet involving intermittent calorie restriction in people with MS.
 
Lynne Shinto, ND, MPH (Oregon Health and Science University) brought up the question, given how MS can manifest itself so differently between people, does a “one size fit all” diet make sense, or does it depend on an individual’s own MS experience? Participants discussed other uncertainties about diet – not just what is the best diet for people with MS, but also how to conduct the best clinical trials that will help figure it out. Participants also discussed the question of how diet interacts with the gut microbiome, and how either or both may impact MS activity. 
 
Focus Area: Emotional Health
Rehabilitation psychologist Dawn Ehde, PhD (University of Washington) pointed out that as part of the Wellness Initiative, the topic of depression was the subject of a separate meeting, and a work group is developing research and program priorities in that area. But the topic of emotional health in MS also encompasses a person’s sense of well-being, their coping strategies, social networks, and ways to reduce stress and anxiety.
 
Researchers are keen to understand what makes some people thrive in the face of diversity while others falter. “We know little about resilience,” noted Dr. Ehde. Although some aspects of personality are inborn, “resilience and positive emotions can be learned skills,” she added, opening the door to providing programs that teach positivity (known as “positive psychology”), stress reduction and coping skills to help individuals and families bounce back from the significant challenges posed by MS. The Society is already offering several programs that address these needs, but having research-backed information on optimizing and delivering these kinds of programs should greatly increase their impact on people’s lives.
 
Clinical psychologist Amy Sullivan, PsyD (Cleveland Clinic) emphasized the need for research and interventions to support emotional health and stress management in people such as family members who are care partners with people with MS.
 
Focus Area: Physical Activity
Dr. Motl reviewed results of studies related to physical activity and exercise in MS, noting that evidence suggests that exercise can improve balance, thinking, depression, fatigue, quality of life and other aspects of symptoms. However, there is a need for research to determine what type of exercise or activity, for what duration and frequency, is best for which individuals, and also the need for activity regimens specifically for people with limited mobility. Dr. Motl also noted that one of the biggest drawbacks related to exercise is that people don’t take it up or stick with it.
 
Other participants stressed the importance of figuring out the biological mechanisms that underlie positive impacts of physical activity in MS so that it can be safely applied and maximized.
 
Making Wellness a Routine Part of Care
An important goal is to make wellness conversations a routine part of MS care. Since most people with MS don’t get their medical care from MS centers with a multi-disciplinary approach to treating MS and its symptoms, there is a need to disseminate wellness findings and approaches more broadly. One approach is a toolkit being researched and developed by Dr. Motl with Society support to help promote physical activity and exercise behaviors and to encourage conversations between healthcare providers and their patients about these behaviors.
 
Participants discussed the fact that healthcare providers are getting more and more questions from their patients about diets, supplements and exercise, but without solid research results available, many are uneasy making recommendations for wellness behaviors.
 
MS neurologist and wellness researcher Barbara Giesser, MD (University of California, Los Angeles) noted, “I started in clinical practice before there were disease-modifying therapies, when we told people not to move or exercise. Now we’re talking about which are the best activities -- it’s a remarkable turnaround. We want practical recommendations so that healthcare providers know what to tell their patients.”
 
Motivating People to Stick with Routines That Help
A persistent theme arising in each of the discussed topics of diet, emotional health and physical activity was the question of how to motivate people to do what they need to do to live well. Research may provide answers about how to get people to make helpful changes in their lives.
 
Special diets or workout routines are notoriously difficult to stick with, even during the course of a monitored study, and especially when people try to keep them up in their day-to-day lives. Several participants noted the emergence of tools, such as electronic diet diaries and wearable activity monitors, which might be harnessed to help provide feedback and help keep people on track.
 
In terms of motivating physical activity, Alex Ng, PhD (Marquette University) talked about his work toward shifting away from a potentially guilt-laden idea of “exercise” toward “recreation” – with the emphasis on having fun while engaging in a physical activity such as strolling, hiking, or dancing. This type of approach may ease lifestyle changes.
 
Meeting participants also noted the need for an integrated approach to wellness so that behaviors and interventions work together in a tailored way for individuals.
 
Bringing It All Together
Dr. LaRocca outlined the need to focus on both the quality and quantity of wellness research so that well-designed studies will have reliable results that can be quickly translated into lifestyle recommendations for people with MS. “We will know we are successful when Society research addresses key uncertainties concerning wellness, the MS wellness research workforce expands to meet the demand, the Society’s programs are based on a scientifically rigorous evaluation of outcomes, and people with MS have access to evidence-based wellness options that help them live their best lives,” he said.
 
Participants began the work of trying to prioritize research opportunities and gaps. Some of the important research questions identified include:
 
Emotional Health
  • ​To what extent do resilience, positive psychology and stress management affect emotional health and/or the course of the disease, and what are the optimal ways to promote their development?
  • What are the mechanisms underlying the effects of these approaches to emotional health?
  • What are the optimal methods for promoting emotional health among family members and/or care partners?
Diet and Nutrition
  • Focusing on small Phase II clinical trials, to what extent do specific diets and/or specific nutrients or combinations of nutrients affect physical health and/or the course of MS, and what are optimal ways to promote the adoption and maintenance of specific dietary regimes?
  • What are the mechanisms underlying the effects of dietary approaches?
  • What role does the microbiota play in physical health generally and in the course of the disease specifically?
Exercise and Physical Activity
  • To what extent do exercise and physical activity affect emotional health and/or the course of the disease, and what are the best approaches and optimal ways to promote their development and maintenance for people with MS?
  • What are the mechanisms underlying the effects of exercise and physical activity in MS?
  • What are the factors (personal, environmental, disease-related) associated with participation in and/or benefit from exercise and physical activity?
Participants discussed possibilities for disseminating guidelines to help more researchers design well thought-out studies that would be more likely to be approved for grant funding. This work will continue as this work team evolves into a possible collaborative wellness research network, and the Society engages them to advise and collaborate to drive this important effort forward.
 
“This is both a challenge and an exciting opportunity to shape the research landscape,” said Dr. Motl. 

About Multiple Sclerosis

Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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