A survey, summarizing the views of 2,600 multiple sclerosis (MS) patients, showed how people manage their disease in real life — and the results offer some surprising insights that might provide clues for future treatment development and optimization.
Conducted by a Stanford University-trained geneticist, Dr. Yael Wilnai, results from the survey on the online patient community GeneFo were presented as an infographic on the community’s webpages.
Diet could play a role in easing some disease symptoms. Still, 17 percent of survey participants had made no changes to their diet. This might be linked to the often contradictory recommendations of an MS suitable diet, but the authors noted that a safe bet would be to skip the sodas and processed sugars known to lower energy levels. Also, they recommended avoiding trans fats and including high-fiber grains, such as brown rice and bulgur that have anti-inflammatory properties and are likely to help symptoms.
Literature reports of fatigue rates reaching 80–90 percent are not uncommon. But only 50 percent of the GeneFo members contributing to the survey reported fatigue. Since more than 80 percent of patients reported altering their diet to help them manage the disease, the authors raise the important question of whether these two findings might be linked. They recommended that future studies investigate the connection between diet and energy levels.
While reports of high rates of comorbid mental health issues, most commonly depression and anxiety, are frequent in the scientific literature, it was surprising to find that the GeneFo survey participants were six times more likely to report feeling calm than feeling anxious. Also, 70 percent rated their physical feeling as either good (30 percent) or neutral (40 percent).
The survey did not go into depth on exercise, but showed that very few survey participants engaged in weight training. Instead, most people took on walking, aerobics, swimming, and yoga when they wanted to get some exercise. This is an important finding since weight training is efficient both for building muscle and supporting weight loss. Treating physicians need to be aware of how their patients exercise, and promote the use of weight training as an optimal exercise type.
Still, both yoga and walking were highly recommended by the GeneFo experts, who also encouraged patients to seek out others with the same MS type in their community to schedule work-out sessions together.
In addition to these main points, the survey reported some curious correlations. Patients who have progressed to the more severe secondary progressive MS go through fewer yearly MRI scans, none to one, than the average two scans per year indicated by people with RRMS. Also, patients who reported feeling good see their doctor as often as those feeling bad, on average three times per year.