For years, the conversations surrounding care for patients with multiple sclerosis (MS) mainly centered around drug development and the optimization of disease-modifying therapies (DMTs). There are now more than a dozen DMTs approved for MS, administered in various forms such as tablets, injections, or infusions. Although, as clinicians have learned, the management of these patients extends past treating solely the relapses.
Integrative wellness is a practice based around the belief that treating patients involves much more than only disease and symptom management and has become an approach adopted by more clinicians in recent years. This all-purpose type of method encompasses aspects of diet and nutrition, exercise, sleep, and ongoing preventive care, among others.1,2 Although there are no set guidelines on how to conduct this care, there are several overlapping themes and ideas.
The conceptual idea of integrative wellness often also carries a stigma, with many assuming these practices are not backed by scientific evidence. Contrary to this belief, ongoing research and the COVID-19 pandemic have confirmed the need for alternative approaches, particularly for patients with MS, who may benefit from interventions tailored to their individual needs.1-5
Variety in Wellness Approaches
Kathy Zackowski, PhD, OTR, senior director of patient management, care, and rehabilitation research, National Multiple Sclerosis Society (NMSS), has been at the forefront of researching and advocating for this new style of care. Her organization funds work that ranges from better understanding the use of acupuncture and yoga, to the resilience of psychosocial approaches, to the relationship of dieting and changes in the gut microbiome.
“The whole idea with wellness is that this is something that everyone can do right now,” Zackowski told NeurologyLive®. “You don’t need a lot of equipment, but you need to understand the important elements of a wellness strategy for you. For someone in pain, we might recommend some of these psychosocial strategies looking at resilience and pain management, but for someone who’s weak, they may need just exercise. Exercise is its own intervention. It’s not simple to go out and say, ‘go exercise.’ We need to understand what elements of that intervention are important for that person.”
The variety and usage of these integrative wellness approaches differs from clinic to clinic, which has added to its natural phenomenon. At Cleveland Clinic,6 physicians recommend maintaining a low-salt Mediterranean diet, getting at least 150 minutes of moderate movement per week, maintaining vitamin D levels between 40-70 ng/mL, not smoking or using tobacco products, and undergoing routine mental health screening.2,7,8
Nutrition’s Role in Wellness
Although there is a migration towards a better understanding of the need for collaboration and comprehensive care, some specialties are not consistently included in the model. Registered dietitians, for example, have historically been excluded from the multidisciplinary care team, with information on nutrition coming instead from integrative or alternative practitioners.
Mona Bostick, RDN, LDN, a nutritionist living with MS with a dedicated passion for optimizing nutrition, commented on this exclusion, adding that while nutrition is often miscast as an “integrative” approach, diet and how patients eat is not an alternative treatment for MS, but it is rather a pivotal aspect of overall health. Bostick is the founder of her private practice, Food Matters 365, now called MSBites, a source for evidence-based nutrition and wellness advice to help patients with MS.
“I believe the shift toward the integrative exists precisely because dietitians have not been included in the care team. With MS being such a disease [that] steals control over the things you thought you had control over, when alternative practitioners are promising to heal, beat, reverse, or give you that control back, the vulnerability that MS presents is going to make someone take a risk on that,” she told NeurologyLive®. “It’s important to know that nutrition and what you eat plays an important role in your overall health, but it doesn’t offset demyelination—nuance and context around what food can do is missing a lot of times in these integrative and alternative messages of this practitioners. I find that to be disconcerting because there is a vulnerability to the MS population, for sure.”
Zackowski echoed similar thoughts to Bostick, adding that even the general public should be exposed to nutritional dietitians. “With MS, it’s complicated. We don’t have the cure yet, and one of the ways the [National MS] Society talks about this is the pathway to cures. The idea that there’s not just one cure, there are multiple cures, and people define cure in a different way. One way of defining cure is taking away symptoms. If diet can provide some improvements in the symptoms people [with MS] have that’s one form of an MS cure,” she explained.
Sharing Best Practices for a Sense of Community
Amidst the ongoing COVID-19 pandemic, the shift to telemedicine challenged clinicians to provide care remotely, whether that be for symptom management or for integrative approaches. Interestingly, some clinicians say the use of telemedicine had a positive effect in increasing collaboration and information sharing within the MS field, as the unknowns associated with COVID-19 generated a need for experts to share timely data relating to the virus and overall best practices with one another.
Mitzi Joi Williams, MD, CEO, Joi Wellness Group Multiple Sclerosis Center, spoke on this increased sense of community within the MS field since the onset of the pandemic and over the course of 2021. Williams noted that her colleagues were not afraid to share findings and information from registries, whereas in the past, the scientific community had cultivated a sense of protectiveness in terms of clinical data that had yet to be published.
“The information sharing that has emerged from the COVID-19 pandemic has really been amazing, and to see the collaboration from people from different academic centers, from the academic centers in the community, to across the pond, across the world, across the globe, has really been astounding,” Williams told NeurologyLive®.
Social media has been crucial in establishing this sharing of information and collaborative attitude, allowing experts in the MS field to share information quickly and freely via online platforms like Twitter, Williams said. Monthly webinars and conferences also aided in the dissemination of updated data, with experts then able to implement practices in real time.
“I hope this collaborative approach amongst MS specialists, general neurologists, and my colleagues around the globe stays,” Williams said. “There has been this amazing unity amongst everyone to try to find the scientific answers we need to be able to adequately care for our patients. We’ve seen a lot of synergy with people creating registries fairly quickly—a lot of things that we thought couldn’t get done are absolutely getting done, [and] a lot of things we thought couldn’t be done remotely are absolutely being done remotely.”
Zackowski spoke on ongoing work of the NMSS to improve this collaboration and sharing of information as it pertains to wellness, which includes the development of the Wellness Research Group and 3 different subgroups: physical wellness, nutritional wellness, and psychosocial wellness.9-11 Information published online is tailored specifically to patients or clinicians, making it easier to access veritable, valuable sources, Zackowski said, noting that patients “do not need to be scientists” in order to understand findings from ongoing studies. This is not, however, a foolproof method for getting the word out about wellness, particularly due to the need for practices and information to be adjusted for individual patients.
“The idea of integrating just those 3 areas is challenging—and that’s not really addressing everything—there’s so many symptoms that people have with MS that I think can be addressed by different wellness approaches,” Zackowski said. “I think it’s really hard to get the message out to people about what to do because there’s no regulatory body on how to make sure the standards are the same everywhere, and that’s something we as a society are trying to grapple with a little bit more.”
Need for Increased Research
Although there is good reason to be excited about these integrative approaches, clinicians themselves also agree that there is a need for extended research that aims at understanding and optimizing these methods. As of now, clinicians use their better judgement, paired with what’s been observed in the literature and through the help of their multidisciplinary teams. There is no current law-abiding guideline that the community has developed or strictly follows.
“When you talk about exercise, diet, or even cognitive rehabilitation, no one knows exactly the right dose, Zackowski stressed. “How much do you need as a person with MS to address your particular issue? We do this automatically with medications because the FDA dictates that you have to put a particular dose and explain what that dose is. In the wellness area, we need to address those things, we need to understand the dose, the intensity, the setting that this is done in, and how that approach will be effective in people who have more than one symptom.”
Despite advances in research in recent years, the space is stilling being held back. Without backing from pharmaceutical companies or industry leaders, it has been difficult to conduct large scale trials that further help validate these methods. These groups have yet to formally recognize integrative wellness as something that has significant therapeutic benefit, especially since the data thus far has been hard to quantify.
That, ultimately, leaves supporters of integrative wellness practices like Bostick and Zackowski to fend for themselves in terms of powering research, or forces them to turn to organizations such as the NMSS in hopes of acquiring funding and materials.
“I’m thinking of getting pharmaceutical companies interested in this combined approach that uses a medication and a wellness strategy,” Zackowski said. “This might be another way to encourage greater funding for this, but it will take time and money to get this understood better. We are right on the forefront though—we’re at a place where this can be studied now, and I’m encouraged by that.”
A Look Ahead
In addition to the need for increased research, there remain complexities in the integration of dietitians into standard of care, according to Bostick. “Out in the community, there are dietitians everywhere. At this point, the obstacle is that continuing education hours are expensive and difficult to obtain. There’s not been a reason for a dietician to justify becoming educated and informed on this topic, because they’ve not yet been welcomed into the comprehensive care team,” she said.
Bostick added that once the talents of these specialists are more appreciated, they may go back to their communities and advocate for these roles as well as provide information for newcomers to feel more comfortable. While a dietitian may have a broad knowledge of nutrition, they may not be as equipped at that moment to treat the MS-specific component. “Broadly speaking, multiple sclerosis is not discussed in our education and training. That’s the obstacle,” she said.
Much like how the efficacy of drugs continues to be optimized in post hoc analyses, it will only be a matter of time before similar studies to further validate these wellness approaches. Overall, the commitment to these nontraditional, forward-thinking ideas represents the general trend within the medical system in recent years to treat the patient from a complete holistic perspective that addresses all downstream aspects of the disease, and not just the root cause.
This contribution to HCPLive’s 2021 This Year in Medicine series comes from sister publication NeurologyLive®.
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