Complementary and alternative medicines are increasingly popular among people with multiple sclerosis (MS) in the northwestern United States, a survey found.
More than 80% of the 1,000 people who responded to the Oregon Health & Science University (OHSU) survey reported using supplements and exercise to help treat their MS, and around 40% have turned to mind-body therapies and diet.
The study based on survey findings, “Cross-sectional survey of complementary and alternative medicine used in Oregon and Southwest Washington to treat multiple sclerosis: A 17-Year update,” was published in the journal Multiple Sclerosis and Related Disorders.
Various disease-modifying therapies (DMTs) are approved to treat MS. But patients continue to experience “ongoing bothersome symptoms, including fatigue, gait dysfunction, and spasticity” while using them, the researchers wrote, and “frequently turn to complementary therapies to help address their … symptoms.”
Complementary and alternative medicine, known as CAM, refers to medical treatments and practices that fall outside of standard care. Complementary medicine refers to those used alongside standard treatments, while alternative medicines are those used in place of conventional treatment.
While some CAMs have been shown to be effective for certain indications, for others evidence of benefits is lacking — and some CAMs may cause harm. In general, less scientific evidence exists to support the use of CAMs than conventional treatments.
The American Academy of Neurology (AAN) published a first comprehensive review, with guidelines, covering the use of CAM to treat MS in 2011. But in the years since, “to the best of our knowledge, no follow-up surveys have evaluated changes in CAM use,” the researchers wrote.
A team led by scientists at the OHSU School of Medicine surveyed MS patients living in Washington state and Oregon in 2018 regarding their use of CAMs. Their survey was a revised version of a similar survey OHSU conducted in 2001 among MS patients in the same area.
Results of the 2018 survey included data from 1,014 respondents. Most were white (87.7%), female (75.5%), and college educated (56.8%). Most had relapsing-remitting MS (67.9%) with “none to moderate disability” (66.9%), with moderate disability defined as the ability to walk at least one block without support.
Most respondents had an income of $50,000 or more (58.8%), and nearly all had health insurance (95.9%).
The 2001 survey had 1,913 respondents, with similar demographics.
Overall, 70.3% of 2018 respondents were taking an approved DMT for MS, with Ocrevus (ocrelizumab, by Genentech) being the most common at 19% use, followed by Tecfidera (dimethyl fumarate, by Biogen) at 14.2%. A majority, 59.2%, rated their treatment as “very beneficial.”
Supplements were being taken by 80.6% of respondents in the recent survey, markedly higher than the 65% in the 2001 survey. Multivitamins and vitamin B12 were the most common type of supplements used, by 44.1% and 40.8%, respectively.
Likewise, 81% of respondents in 2018 said they used exercise to help with symptoms, with 78.8% rating exercise as “very beneficial.” In 2001, 67% reported using exercise as a supplementary treatment.
Stretching was the preferred exercise of 57.8% of 2018 respondents, and walking of 59.4%.
“The use of these alternative supplements has remained high even though we have all these other treatment modalities,” Elizabeth Silbermann, MD, a study co-author and neurology fellow, said in a OHSU news story.
While supplement use has increased, the use of herbs overall has remained relatively stable: 15.4% in 2001 and 16.8% in 2018. But turmeric — an herb not included in the 2001 survey — was the clear choice of respondents in 2018, with 12.8% using it compared with 0.8% for ginseng and 1.5% for ginkgo.
“Dissemination of these [AAN] guidelines, such as the inefficacy of ginkgo biloba to improve cognitive function, may be responsible for the nearly 50% drop in use of ginkgo over the past 17 years demonstrated in our survey, and highlights the importance of guideline development,” the researchers wrote.
Use of mind and body therapies — such as mindfulness, massage, yoga, and acupuncture — rose from 14.3% in 2001 to 39.3% in 2018. Overall, 66.9% of practitioners of these therapies rated them as “very beneficial.”
Specific diets were being used by 41.8% of respondents in 2018 compared with 37.1% in the earlier survey. While some diets were more common in 2018 than 2001 (high protein/low carb and gluten free), others were less common (low fat/low cholesterol and Swank).
Cannabis use, which was not asked in 2001, was reported by 29.7% of people in the 2018 survey, with 70.8% rating it as “very effective.”
In 2001, 6.7% of respondents reported discussing CAMs with their neurologist. That percentage rose nine times, to 55.4%, in the 2018 survey. This could indicate a general trend of better communication between patients and their healthcare providers, and also a broader acceptance of CAMs beyond standard treatments.
“There’s been a change in culture between patients and providers over the past 20 years,” Silbermann said. “It’s less paternalistic and more of a partnership.”
Researchers used statistical models to identify factors associated with a likelihood of CAM use. Broadly they found that female sex, progressive disease, and a longer disease duration (time since diagnosis) were associated with a greater likelihood of CAM use, with some variation based on the particular CAM in question.
“Overall, CAM use in [people with] MS has increased over the past 17 years, even as more conventional DMTs have entered the market,” the researchers wrote. “We found the largest increases in the use of specific supplements and more generally for mind-body therapies and exercise.”
They speculated that the increase might, in part, be attributable to social media and the internet.
Researchers also stressed the importance of more research on CAMs and their use.
“Both [people with] MS and providers need high-quality evidence-based research to guide appropriate education regarding both safety and efficacy when CAM is in the MS treatment strategy,” they wrote.
This work was supported by the National Multiple Sclerosis Society and the Oregon Clinical and Translational Research Institute.