Publication
Research Article
Background: Running, while challenging, offers benefits for individuals with multiple sclerosis (MS). Health care professionals (HCPs) can support this activity but may need further training to do so. Understanding the barriers and facilitators to running can help HCPs provide better support. This study aims to explore the running experience of individuals with MS and provide guidance to HCPs to support their patients who run.
Methods: A qualitative descriptive study was conducted using semistructured focus groups and individual interviews. Transcribed data were coded with NVivo software, and inductive thematic analysis was used to identify emergent themes. Demographic and basic running activity data were collected via survey and analyzed using descriptive statistics. Participants included individuals with MS living in Australia who ran regularly.
Results: Eighteen participants (3 male, 15 female) with a median age of 44 years (IQR, 12.8; range, 31-57) were included in the study. Most participants met or exceeded the general MS aerobic exercise guidelines, running 3 days per week (IQR, 2.0; range, 1-4) for a median duration of 42 minutes per run (IQR, 25; range, 15-243). Five focus groups and 1 individual interview were conducted. Six themes were generated: running ability and adaptation, navigating temperature, ensuring environmental safety, managing health and MS, developing strategies to support running, and the need to run.
Conclusions: HCPs have opportunities to support and sustain running participation for individuals with MS by considering safe training adaptations, environmental safety, and appropriate referrals to other HCPs.
From the College of Healthcare Sciences, James Cook University, Queensland, Australia. Correspondence: Moira Smith, PhD, College of Healthcare Sciences, James Cook University, 1 James Cook Drive, Townsville, QLD, 4811, Australia; email: moira.smith2@jcu.edu.au.
Individuals with multiple sclerosis (MS) have expressed interest in participating in running or are already engaged in running.1,2 Running or jogging demands a high level of mobility, balance, and endurance. Therefore, maintaining the ability to run can be challenging for individuals with MS due to the impairments associated with the disease, including reduced strength, balance, coordination, altered vision, heat sensitivity, and fatigue.3 As a result, MS impacts mobility and is associated with the risk of falling.4 Exercise can improve some of these impairments and can be associated with a reduction in disability.5,6 Thus, participation in sports and exercise from an early stage in the disease process may be key to maintaining the high level of mobility associated with running, although this is still an emerging area of research.7
While some individuals may participate in running independently, others seek support.1 Evidence suggests that health care professionals (HCPs) do not provide enough guidance on exercise,1 and research has shown a need for more health and exercise discussions between HCPs and individuals with MS.8,9 The lack of discussion may be related to HCPs’ lack of familiarity with the guidelines regarding physical activity and exercise for individuals with MS.10-12 Key factors for general exercise participation for these individuals include: internal factors (knowledge, self-efficacy), external factors (environment) and management (support systems).13 However, specific perspectives in relation to running with MS have not yet been explored.
Identifying factors that support or enable running could provide insight into engagement and perseverance. The benefits of exercise for individuals with MS are well documented7,14,15 and exercise guidelines specific to MS are available,16-18 but adherence to and sustainability of exercise can be difficult.19 Given that participation in physical activity for individuals with MS is lower than that of the general population, finding mechanisms to best support individuals in the pursuit of their chosen exercise or sport is imperative.20,21 Therefore, the aims of this study are to explore the experience of running from the perspective of individuals with MS and to provide guidance to HCPs to support runners with MS.
Ethics
Ethical approval for this study was obtained from the James Cook University Human Ethics Committee on May 10, 2023 (reference H9037). Written consent was obtained from participants prior to study commencement. Verbal consent was solicited prior to each interview.
Study Design
We used a qualitative descriptive methodology to provide a rich interpretation of the experience of navigating running with MS.22 Five online focus groups and 1 individual telephone interview were conducted (average duration of 60 minutes). This study followed the Consolidated Criteria for Reporting Qualitative Research checklist for qualitative studies.23
Participants
Participants were included if they had a confirmed, stable diagnosis of MS (ie, no worsening of MS symptoms in the past 3 months), were 18 years or older, lived in Australia, and ran regularly. We defined regular as running at least once every 4 weeks. Participants were excluded if they had an additional health condition that prohibited their participation in exercise, as screened via the Physical Activity Readiness Questionnaire.24 Participants were recruited via media postings distributed by MS Australia and James Cook University during 2023 and 2024, as part of a larger quantitative study examining running data over a 4-week period. The first 25 participants in the larger study were invited to take part in the qualitative study, with the opportunity to recruit more participants to reach data saturation, as required. Participants were not known to the researchers prior to recruitment.
Data Collection
Study data were collected from January 2024 through August 2024 and managed using REDCap electronic data capture tools.25,26 Participants were screened using a survey distributed via REDCap. Eligible participants were provided with an information sheet and consent form to sign and return if interested in participating. Using REDCap, consenting participants contributed demographic data (age, sex, location, employment status), MS-specific data (time since diagnosis, classification, medication, Patient-Determined Disease Steps [PDDS] score), and 1 week of running activity data (frequency, duration, distance, intensity).
Interview questions (Table 1) were developed by the research team based on a review of the current literature27 and by building on exercise participation interview guides previously implemented with individuals with MS,28,29 but the current questions were not piloted with consumers. Interviews were conducted in 5 Zoom focus groups of 2 to 5 participants. Due to an unstable internet connection, which could not support an online focus group, 1 participant was interviewed via telephone. All interviews were audio recorded and transcribed verbatim using the Microsoft Word transcribe feature. All transcriptions were reviewed for accuracy by the interviewers (M.S., T.M.) and corrected as needed before being uploaded to NVivo 1.7.1 (QSR International) for analysis. The interviewers also compiled a summary report following each focus group. Interviews were conducted until data saturation was achieved and no further themes emerged.30 Both interviewers have PhDs from health fields (physiotherapy and sports science) and 7 years of experience in qualitative research.
Table 1. Interview Domains and Questions
Data Analysis
Participant demographic and running activity data in Microsoft Excel were analyzed by researchers and reported descriptively as median and IQR. Focus-group data were analyzed in accordance with an exploratory qualitative descriptive methodology.22 Following familiarization with the data set,31 each line of data was coded by 1 researcher (M.S.), using a short title or word enabling clear description of topics within the data.32 Codes and patterns from the data sets were reviewed by a second researcher (T.M.) to verify data or identify errors. Inductive thematic analysis was used to analyze the patterns, with similar codes brought together to identify emergent themes.22,31 Themes were reviewed by 2 researchers (M.S., T.M.) to check that they were supported by the data, and analysis continued until themes were refined.31 Key themes were checked and verified with 5 participants selected at random.
Of 25 invited individuals, 18 agreed to be interviewed. The 3 men and 15 women had a median age of 44 years (IQR 12.8; range 31-57); 56% worked full-time; 94% had a relapsing-remitting diagnosis; and the median PDDS score was 0.0 (IQR 2.0; range, 0-3). Most met or exceeded the general MS aerobic exercise guidelines,16,17 running 3 days per week (IQR, 2.0; range 1-4) for a median duration of 42 minutes per run (IQR, 25.0; range, 15-243). All participant demographics are in Table 2, and Table 3 is a running activity chart. From the interview data, 6 main themes were identified with underpinning subthemes (Figure 1).
Table 2. Participant Demographics (N=18)
Table 3. Participants’ Running Activity Over 1 Week
Figure. Themes and Subthemes
Theme 1: Running Ability and Adaptation
Running ability and participation were variable across participants, with distances ranging from 2 km to ultramarathon distances, and most participants running at least weekly. Many participants used running events as motivation, including 5-km Parkruns (free community walk, jog, or run event), 10-km events, half-marathons (21.2 km), trail runs, marathons (42.2 km), and ultramarathons (≥ 50 km). A female participant in focus group (FG) 4 said, “I wasn’t really active when I got diagnosed with the MS and so I decided to raise money and run [a] 5K, and at that time, that was a challenge. And then, over lockdown, I just kept running and did my first half-marathon as part of the MS run as well, which was really exciting. And then I’ve just kept going. Did my first marathon last year as part of the Melbourne Marathon, which was amazing.”
Participants found a way to gradually build their running routines, modifying their plans depending on symptoms (eg, fatigue), medication, or general lifestyle factors. Sometimes that planning was challenging, with participants noting that they didn’t always get the balance right. A male participant in FG5 said, “And I really just had to modify that now down to something that is manageable. Trying to find that sweet spot where I can go for a run, still feel like I’ve got a little bit of a high from my run, and it’s woken me up but hasn’t put me to sleep.”
Theme 2: Navigating Environmental Temperatures
Excessive heat, humidity, and cold temperatures associated with living in Australia significantly impacted running. From tropical Queensland to temperate Tasmania, weather extremes were experienced across the states. A male participant in FG5 said, “I find that the extremes in temperatures and cold can also make it difficult.”Runners often reduced distance or adjusted timing to manage MS-related challenges like heat sensitivity, sensory changes, motor weakness, spasticity, and physical or cognitive fatigue. While treadmill running could be seen as an option to maintain a manageable temperature, most runners preferred the outdoor environment despite the challenges. A female participant in FG3 said, “I do struggle with the heat as well, but also struggle with the cold. So, with the heat, I get pins and needles in my feet and when I get too hot, my legs turn to jelly. So, there [have] been runs where I’ve been running and I’m so hot that it’s almost like I’m dragging my legs behind me. I’m just trying to finish, but I’m just so determined that I’ll keep pushing through regardless. I don’t know if it’s a good or a bad thing.”Running capacity and performance improved outside of the extreme seasonal temperature variations.
Theme 3: Ensuring Environmental Safety
Some runners could navigate challenging trail terrain. Others had difficulty with the road surface due to sensory issues and chose bitumen/concrete paths, flat surfaces, or roads with little camber. Running at night was problematic for some, due to visual disturbances, including optic neuritis. Running torches were used to combat this, and running with a partner added safety. A female participant in FG 4 said, “I like to know the path first, just because my feet have sensory difficulties, so I won’t sort of go off my usual paths too much because I want to be able to relax in a jog and not keep looking down at the ground wondering if I’m missing that sensory input.”
Falls were a concern for some participants who identified a risk of tripping from drop foot, lower limb weakness, or sensory issues. Even with falls, participants continued to run, reducing the risk by being selective in their route choice (eg, choosing familiar routes close to home) and running with a partner, because it was important for them to continue running. A female participant in FG3 said, “I do some hill running…mostly more downhill for the running part. But I wouldn’t do that on my own because I don’t feel confident at all because I’ve had some falls, and I just think it’s not worth putting myself at risk without having somebody else there.” Only 1 participant sought professional assistance and had a physiotherapy running assessment.
Male and female runners highlighted bladder and bowel issues and a need to plan their routes to allow access to a toilet. “So, every, every single route, I just have to make sure that there’s access to toilets on the route…. I guess it’s just what I do. If I want to run, then this is how I have to prepare and this is how I have to plan.” Other strategies included ensuring an empty bladder and bowel prior to running, although this was not always sufficient for longer distances.
Theme 4: Managing Health and Multiple Sclerosis
Participants reported navigating a variety of MS symptoms, including sensory and motor loss, fatigue, spasticity, pain, and visual impairment, to continue running. The female interviewee said, “Look, I think I do battle with fatigue with MS. Sometimes it almost becomes an emergency to just go to bed. It’s kind of the tiredness that does not feel like normal tiredness.” They selected certain times of day to exercise, monitored heat, used fatigue management strategies, and some sought support from physiotherapists and exercise physiologists. Some participants reported using the Australian National Disability Insurance Scheme (NDIS) to fund activities such as cleaning, meal preparation, and yard maintenance to allow more time and energy for exercise. Many reported that the benefits of running were important for their health, mentioning reduced fatigue and improved physical fitness and mental health. A female participant from FG4 said, “I wanted to get fit and be fit and I guess get ahead of the MS. I figured if I’m fit and strong, if/when a relapse does occur, I’ve got something behind me versus already…carrying some extra weight or maybe not being strong or not having good stamina or endurance or anything like that. It was a sense of control, I think, that I can control this. I can’t control the MS, but I can control how healthy I am outside of that.”
Disease-modifying and immunosuppressant drugs also interfered with running. Some participants reported difficulty running in the period prior [to] injection/infusion when they experienced significant fatigue or weakness. Most were uncertain as to how to manage this. Others reported that the immunosuppressant drugs made them more susceptible to seasonal illnesses, which also disrupted their running.
Theme 5: Developing Strategies to Support Running
To combat heat and humidity, participants utilized ice vests and cooling headbands or scarves with varying effects. Some thought that ice vests were effective, but were often impractical to run in. Many identified that good running shoes were essential.
Technologies used to support running included apps and watches. A female participant from FG4 said, “I use the Runna app. I did use that for [a] half-marathon last year and it’s like [from] your phone straight to your watch. Say how many times a week you want to run, where you’re starting from, what you want to try and do, and it’ll try [to] cater to you.” Some participants used HCPs or running coaches or groups to assist with planning. A female participant from FG4 said, “I guess mine’s been led by an exercise physiologist. I’ve been following their guidance, and I’ve bought a Garmin watch as well, so I could…track how far I was going.” Some participants eschewed technology and just ran. A male participant from FG5 said, “What I tend to do is I just run, and my body instinctively just runs to whatever it can run that day. So, when I look back on my pace, there [are] some days that my pace is much better than other days. Like, I could do the same run and I do the same route during lunch breaks and there can be a big difference between one day to the next day because it’s just how my body is able to run on that particular day. So, I give my best every day, but my body sort of dictates what that best is, and that’s basically how I do [my running].”
Many sought support by running with a partner or group and enjoyed the safety, social support, and accountability that it offered. A female participant in FG2 said, “I tend to steer towards Parkrun because running with people makes me more motivated.” Other participants preferred to run solo, enjoying their own time and having the ability to set the pace.
Theme 6: The Need to Run
Participants felt a need to run to maintain fitness and to have some control over their MS. They were greatly aware that running was good for health and well-being. A female participant in FG1 said, “Very, very important. I run and I bike ride; I do whatever. And doing all of those things, it’s about me still having control over what I do, about staying fit and healthy so that I can hopefully stave off this illness, forever if I have my way.” Another runner with MS from FG1 said, “Just, yeah, seeing the positives in what my body can do given the negatives that it’s also doing.” For some, running was part of their identity and for others, it was part of their routine. Most enjoyed running, but for those who did not, they persisted because it was beneficial, even if they didn’t like it. A female participant from FG1 said, “I don’t enjoy running, full stop; but I know it’s good for me.”
The aim of this study was to explore the experience of running from the perspective of individuals with MS and to provide guidance to HCPs to better support runners with MS. Our participants were engaged with running, performing across a broad spectrum of ability. Not all participants (n = 6) achieved the MS general exercise aerobic guidelines (90 minutes of moderate exercise per week),16-18 but most did, and some (n = 4) exceeded the MS advanced aerobic exercise guidelines (> 200 minutes of aerobic exercise per week).16 Although many were not aware of the disease-specific guidelines, they were aware that it was important to exercise for MS management and general health and well-being.33 Knowledge of the optimal methods of running was less apparent. From a practical point of view, participants indicated that environmental and safety concerns needed to be addressed to support running. The key themes of this study highlight the potential scope for support from HCPs to enable individuals with MS to participate in running within a
community setting.
Running Ability and Adaptation
Our interviewees said that they would welcome coaching, education about MS exercise guidelines, and safe adaptation of training schedules to assist with managing symptoms.34 HCPs have also indicated that they would like more training and would welcome strategies to assist with exercise promotion in the MS community.10 A good starting point for all involved is to consult existing resources on exercise and MS. Exercise guidelines provide recommendations on the duration, frequency, and intensity of aerobic exercise for individuals with different levels of disability, as indicated by the Expanded Disability Status Scale.16-18 HCPs can advise on gradual progression, while working toward a patient’s running goals and educating them on the potential benefits of a flexible exercise program tailored to their signs and symptoms.34 Advocacy agencies continue to provide useful resources for HCPs and individuals with MS, including the 2025 Modifiable Lifestyle Factors for Multiple Sclerosis guide,35 which has been shared internationally via the MS International Federation.36
Navigating Environmental Temperatures
HCPs can advise individuals on how to manage environmental considerations such as temperature extremes by utilizing cooling devices,37,38 drinking cold water,39 or adjusting the time of day they exercise. An option is to use a treadmill in an air-conditioned environment to reduce the impact of heat sensitivity.
Ensuring Environmental Safety
Importantly, data from this study has uncovered an element of risk-taking in relation to running. HCPs can mitigate this risk by assessing the multifactorial elements associated with the risk of falling, such as strength, balance, and coordination or vision impairments, and implementing appropriate, individualized preventive strategies.4 This may require referrals to a physiotherapist, exercise physiologist, or ophthalmologist. Discussing the running environment is important to identify potential difficulties associated with terrain and balance, lighting and vision, distance from home, and associated fatigue. Addressing and modifying these factors sets runners up for success. Discussions should also identify the individual’s specific continence issues and include practical solutions like using running paths that are situated close to amenities. Because bladder and bowel issues are common for individuals with MS, referral to a continence adviser or nurse is advisable for management strategies and to enhance well-being and quality of life.40,41
Managing Health and MS
Several MS signs and symptoms can impact running performance. Concerns over specific strength, coordination, or balance impairments can be assessed and addressed through targeted exercise with a physiotherapist or exercise physiologist.42 To address foot function and physical activity in people with MS,43 a referral to a podiatrist or orthotist may enhance the individual’s running experience.
Symptoms of fatigue can improve with aerobic exercise or strength training,6 as well as pacing strategies to allow gradual progression of exercise intensity.44 HCPs can also refer patients to other agencies that offer support for tasks that can be fatiguing and detract from the time available for exercise. These include the NDIS in Australia, the Personal Independence Payment in the United Kingdom, and Enabling Good Lives in New Zealand. Including services such as a continence adviser or nurse, podiatrist, exercise physiologist, or physiotherapist in the application may also be beneficial.
Developing Strategies to Support Running and the Need to Run
The sustainability of running and exercise is important given the chronic nature of MS and its associated difficulties. Several solutions were highlighted by this group of successful runners, including social supports that enabled personal accountability. This idea of accountability to reinforce and sustain exercise participation is supported by other studies of people with MS and the general population.29,45 Utilizing Parkrun or other running events provides a level of accountability but also shifts running from rehabilitation to physical activity engagement within one’s community and self-management. For long-term self-management, participants in this study showed that technology can provide support and encourage independence once routines are established. Encouraging self-management strategies is important for perseverance and is associated with the self-efficacy concept of behavior change theories.46
Behavior change strategies can help with long-term continuation of community-based running. HCPs can explore aspects of the self-determination theory47 for early adopters, where strategies are codesigned to build competence (running ability), autonomy (running preferences), and relatedness (support by others, or feeling connected to others, eg, Parkrun). Behavior change interventions based on other theories (eg, social cognitive theory) have also had success in increasing physical activity in the MS population,48 and could be explored further for long-term maintenance of community-based running. HCPs can work with individuals with MS to provide support to enable the sustainability of running.
Future Research
Future research is required to determine the most effective means of enabling individuals with MS to safely participate in running within a community setting and to continue that practice indefinitely. This includes education, coaching, and risk assessment with regard to falls, environment, and temperature. Identified as a key theme in this study, temperature and climate play a critical role in the participants’ ability to run. Further exploration of the design and practicality of cooling devices while running is relevant in Australia and other regions with high temperatures.
Additionally, participants identified the challenge of running or exercising prior to the injection or infusion of MS disease-modifying drugs. This presents an area for further exploration to address fatigue or weakness experienced during this time.
While this study investigates themes pertinent to Australia, extending the analysis to different continents to determine if comparable themes emerge would be valuable. Conducting similar examinations in other areas (eg, North America, South America, or Europe) could provide insight into whether these patterns are consistent across different geographical contexts.
Strengths and Limitations
Participants were from most states and territories in Australia except for South Australia and the Northern Territory. This diverse range of locations provided an opportunity for key elements of running with MS to be explored, such as climate, safety, and accessibility. Participants were predominantly classified as having relapsing-remitting MS (94%), and PDDS scores were in the normal to moderate disability range (range, 0-3); therefore, they were not representative of individuals with secondary progressive MS or greater disability. Running may be best suited to individuals with MS who exhibit low or no disability, most likely in the early stages of the disease. Empowering individuals with MS to run could help them increase their physical activity level safely, thereby addressing symptom management and fitness.
Further insights may be obtained by exploring the experiences of individuals with MS who began a running program but were unable to sustain it. Such a study would inform further opportunities for HCP support.
Running or jogging is a possible physical activity for individuals with MS. Our research informs HCPs about the specific needs and challenges faced by runners with MS. By highlighting practical strategies for safe adaptation, environmental safety, and symptom management, HCPs can enhance the support they provide to these individuals. This study not only emphasizes that people with MS can leverage their strengths to overcome challenges and remain active, but also underscores the necessity of tailored guidance from HCPs to sustain participation in running.
Acknowledgments: We acknowledge Kyle Ambrose for assistance with data analysis. This research was supported in kind by the College of Healthcare Sciences, James Cook University.
Declaration of Conflicting Interest: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding Statement: The authors received no financial support for the research, authorship, and/or publication of this article. There has been no prior publication of this work.
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