Editorial - Volume 21, Issue 6 - November 2019

While researching the literature on disablement models, I stumbled upon a few articles discussing the notion of subjective time (or temporality) in chronic illness. Studies of the subjective impact of MS (such as those found in our recently published 2019 theme issue dedicated to identity and stigma) often reflect on the evolution of perceptions and attitudes over time. However, I have not found any published work primarily dedicated to the exploration of subjective time in MS, even though perceptions of the past, present, and unpredictable future(s) in relation to the disease may affect coping, treatment adherence, goal setting, and the communication between patients and health care providers (the latter focusing on “objective time”). As the end of the year brings about musings on the passage of time, it could be enlightening to better understand how time passes for our patients and their loved ones.

The CME/CNE article in our last issue of 2019 addresses the use of technology for self-monitoring, an enticing development in the recent surge of data collection initiatives in health care. The patients interviewed by Wendrich and colleagues identified positive aspects, such as increased awareness and a desire to “act on the data,” and less positive consequences, for example being constantly reminded of their disease and “data overload.” These findings highlight the need to incorporate patient input in the design and implementation of self-monitoring technology, in addition to ensuring that the data are valid and reliable.

Three articles illustrate our journal's aim to publish the results of pilot studies exploring new measurement tools and interventions relevant to comprehensive MS care. Determinants of walking performance are not fully understood in MS, particularly those related to muscle function. Willingham and colleagues found that muscle oxidative capacity (measured with near-infrared spectroscopy) and muscle endurance were significantly correlated with walking capacity and perceptions of walking limitations in women with MS across a wide range of disability. These findings did not differ between African American and white women. The article by Pilutti and colleagues adds to the body of evidence on nonmotor benefits of physical exercise in MS. In their pilot randomized controlled trial comparing functional electrical stimulation cycling to passive cycling, improvement in cognitive processing speed, fatigue, and pain favoring functional electrical stimulation cycling was noted. Fatigue management educational programs have emerged as an effective strategy for improving fatigue. Although these programs generally take place in an outpatient or community setting, Hersche and colleagues report on the development and validation of a 3-week inpatient program, the Inpatient Energy Management Education program. Feasibility and participant satisfaction were favorable, and short-term behavioral changes were effected in this uncontrolled pilot study.

The practice of medicine is a humbling endeavor. Walker and colleagues, in their review of 100 medical records from their MS clinic, found gaps in the identification of cognitive, mental health, and psychosocial problems, and in the recommendation for intervention when at least one issue was identified (even though those with identified issues used clinic services more often than those who did not). These real-life observations emphasize how difficult it can be to provide comprehensive MS care following guidelines and quality recommendations in a busy practice, and call for intervention studies to optimize the identification and management of consequences of MS despite the constraints of health care delivery.

The case report by Samudralwar and colleagues illustrates the challenges of keeping MS controlled in the context of an opportunistic infection (cryptococcosis), a very relevant topic in this era of increasingly aggressive disease-modifying therapies. Reminding us of disparities in the advancements of MS research and care across the world, the letter from Moghadasi alerts our readers to the lack of epidemiological studies of neuromyelitis optica spectrum disorder in Iran.

Well known for his contributions to cerebrospinal fluid testing in MS, Dr. Wallace William Tourtellotte passed away earlier this year. I invite our readers to discover his many other accomplishments in his obituary.