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.
Regarding medical treatment, the survey showed highly polarized opinions as to the effectiveness of some common MS drugs. Half the people treated with Tecfidera (dimethyl fumarate) or Avonex (interferon-beta 1a) stated that the drugs were completely ineffective, while half rated them quite effective. Likewise, Copaxone (glatiramer acetate) was rated as ineffective by half its users, and considered very effective by the other half.
If further investigated, the results might give new insights into both disease and treatments specifics, providing opportunities for treatment optimization or new drug discovery.
The many more optimistic findings presented in the survey compared to scientific publications raise questions about what factors might contribute to the difference. It might be worth exploring if the mere fact that survey participants belong to a patient community, and are surrounded by an empowering and encouraging atmosphere, makes them feel better both physically and mentally.
As a career advanced nurse practitioner, and after MS, a social scientist, with MSx25 years, I suspect that those who feel awful most of the time may be less likely to complete a survey, thus skewing the results. I don’t think that many fell good so much of the time.
I don’t know anybody on interferon who feels good.
I find Pilates with a sensitive coach, using the Pilates equipment, to be even better than yoga, though I find it essential to my well-being.