Does MS exile you from the everyday of life?

Barts-MS rose-tinted-odometer: ★★★★★ (Sunday or Summer orange #f99f00)

Exercise has emerged as a safe, effective, low-cost, non-pharmacological intervention for managing disability experienced by pwMS. Despite the evidence, it is the most under-prescribed and under-utilised disease-modifying therapy we have at our disposal. 

Exercise promotes improvements in aerobic capacity, muscular strength, balance, walking performance, and gait kinematics, whilst it also reduces fatigue, depression and anxiety. 

The meta-analysis below asks whether exercise training increases participation in everyday life, such as carrying out daily tasks and self-care, walking and movement, interpersonal relationships, and recreation and leisure. Are you surprised that the answer is YES

EXERCISE INCREASES PARTICIPATION!

So for those of you who are letting ‘MS exile you from the everyday of life’ I would advise trying exercise to help you re-engage with the everyday. 

Do any of you have any personal anecdotes that you can share with us about how exercise has changed your life? 

Edwards et al. Exercise training improves participation in persons with multiple sclerosis: A systematic review and meta-analysis. Review J Sport Health Sci. 2021 Jul 26;S2095-2546(21)00089-2. doi: 10.1016/j.jshs.2021.07.007.

Objectives: While previous studies have examined the effects of exercise training on other International Classification of Functioning, Disability and Health (ICF) component levels in persons with multiple sclerosis (MS), the effects of exercise training on participation remains unclear. The objectives of this review were to: (1) systematically characterize the use of outcome measures that capture participation in exercise training studies; (2) quantify the effect of exercise training on participation in persons with MS.

Methods: A search of 6 electronic databases (CINAHL, Sport Discuss, EMBASE, MEDLINE, Cochrane Central, Scopus) was conducted to identify controlled and non-controlled trials involving exercise training and participation in persons with MS. Search strings were built from Medical Subject Headings (MeSH) and “CINAHL headings”. ICF linking rules were used to identify participation chapters and categories captured. Meta-analysis was used to quantify the effect of exercise training on participation in randomized controlled trials (RCTs) comparing exercise effects to no intervention/usual care.

Results: Forty-nine articles involving controlled and non-controlled exercise trials were included in the systematic review of outcome measures. Sixteen different outcome measures that captured all 9 participation chapters and 89 unique participation categories were identified. Across these 16 outcome measures, “mobility” was the most represented participation chapter, with 108 items. A subsample of 23 RCTs were included in the meta-analysis. An overall effect of 0.60 (standard error = 0.12, 95% confidence interval: 0.37-0.84, z = 4.9, p < 0.001) was calculated, indicating a moderate, positive effect of exercise training on participation.

Conclusion: The current review provides information that can be used to guide the selection of outcome measures that capture participation in studies of exercise training in persons with MS. Exercise training has a positive effect on outcomes that capture participation, providing further evidence for the role of exercise training in promoting and maintaining engagement in everyday life.

Keywords: ICF framework; exercise training; multiple sclerosis; participation.

Conflicts of Interest

MS-Selfie Newsletter  /  MS-Selfie Microsite

Preventive Neurology

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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice. 

To HITT or not to HITT?

Barts-MS rose-tinted-odometer: ★★★★★ (Saturday – a red-hot poker day #f54303)

There is little doubt that exercise is good for you and is a form of disease modification. However, there is a big debate about whether high-intensity interval (HIIT) or moderate continuous training (MCT) (aerobic) is best for you. This study below suggests HIIT is best. 

Positive changes in cardiorespiratory fitness were larger and the non-response less with HIIT compared to MCT. Younger age and lower starting or baseline fitness predicted a higher absolute improvement following the exercise intervention. 

The problem with HIIT and even MCT is that pwMS who are disabled may have difficulty exercising. Saying this, many of my patients who are even wheelchair-bound have found ways to work out using upper limb exercises. What is not addressed is how to get pwMS to start exercising; it is easy to prescribe exercise, but long term adherence with exercise and other lifestyle interventions is very poor. 

If you have been successful in maintaining an exercise program can you let your fellow pwMS know your secret? Thanks. 

Schlagheck et al.  VO2peak Response Heterogeneity in Persons with Multiple Sclerosis: To HIIT or Not to HIIT? Int J Sports Med . 2021 Jul 1. doi: 10.1055/a-1481-8639.

Exercise is described to provoke enhancements of cardiorespiratory fitness in persons with Multiple Sclerosis (pwMS). However, a high inter-individual variability in training responses has been observed. This analysis investigates response heterogeneity in cardiorespiratory fitness following high intensity interval (HIIT) and moderate continuous training (MCT) and analyzes potential predictors of cardiorespiratory training effects in pwMS. 131 pwMS performed HIIT or MCT 3-5x/ week on a cycle ergometer for three weeks. Individual responses were classified. Finally, a multiple linear regression was conducted to examine potential associations between changes of absolute peak oxygen consumption (absolute ∆V̇O2peak/kg), training modality and participant’s characteristics. Results show a time and interaction effect for ∆V̇O2peak/kg. Absolute changes of cardiorespiratory responses were larger and the non-response proportions smaller in HIIT vs. MCT. The model accounting for 8.6% of the variance of ∆V̇O2peak/kg suggests that HIIT, younger age and lower baseline fitness predict a higher absolute ∆V̇O2peak/kg following an exercise intervention. Thus, this work implements a novel approach that investigates potential determinants of cardiorespiratory response heterogeneity within a clinical setting and analyzes a remarkable bigger sample. Further predictors need to be identified to increase the knowledge about response heterogeneity, thereby supporting the development of individualized training recommendations for pwMS.

Conflicts of Interest

MS-Selfie Newsletter  /  MS-Selfie Microsite

Preventive Neurology

Twitter   /  LinkedIn  /  Medium

General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice. 

#T4TD: biohacking

Did you know two lifestyle options, i.e. exercise and diet, are probably the most effective add-on neuroprotective therapies for treating MS? 

Exercise induces long-lasting changes in the brain, which includes upregulation of growth factors and release of endorphins, that are almost certainly neuroprotective. Similarly, diets (caloric restriction, intermittent fasting and low-carbohydrate ketogenic) stimulate metabolic pathways that are both anti-inflammatory and neuroprotective. Why would someone with MS not want to hack their metabolism to derive these benefits? 

CoI: none in relation to this post

#T4TD = Thought for the Day

P.S. Please note that if you are overweight you need to lose weight first to exercise properly. Exercise, without a change in your diet, is not an effective weight-loss strategy.

Re exercise in MS: should we be flogging a dying horse?

Barts-MS rose-tinted-odometer ★★★ 

I am at the NMSS’ Pathways to Cures think tank where exercise is a major theme in terms of restoring lost function. A lot of discussions have been about how we motivate and get pwMS to exercise. Some suggested using motivational interviewing techniques and behavioural psychology to motivate and nudge pwMS to exercise. The elephant in the room is that some people simply don’t like exercise. Are you one of them?

Not many people know that your participation in exercise is largely driven by genetics. It is clear from the twin study below that genetic variation is important in relation to individual behaviour when it comes to exercise. Heritability of exercise participation in males and females was similar and ranged from 48% to 71%; this may explain why you love or hate exercise. At the moment we don’t know what this heritability in relation to exercise is due to. As the investigators’ point out in their conclusion that it may ‘involve genes influencing the acute mood effects of exercise, high exercise ability, high weight loss ability, and personality’

One of the other aspects of exercise that was discussed was its biology, in other words how does exercise work. If we can work this out we could potentially explore drugs to mimic exercise. The problem with this reductionist approach is that exercise is very complex and hence likely to be very dirty. For example, exercise can be aerobic (oxygen) or anaerobic (lack of oxygen) and can involve resistance. Then there is intensity and duration. Is HIIT (high-intensity interval training) better than aerobic exercise? What about movement? Does exercise require you to move; is a treadmill run equivalent to an outdoor run? How important is exercise frequency; is daily better than 3-4 times a week versus the weekend warrior’s activity on Saturday and Sunday? 

The bottom line is that we know exercise works for some pwMS. However, as always we have many unanswered questions. One that Robert Motl, the doyen of exercise research in MS, raised with me in one of the coffee breaks is that we don’t know if exercise may have negative effects in certain groups of pwMS. For example, during a relapse or in more advanced MS. Is flogging a dying horse, i.e. making people with walking impairment exercise their lower limbs, potentially bad for them in that overuse of the pathway through exercise is speeding up its degeneration? We need to be careful in not making pwMS feel guilty about not exercising when we don’t have a mature evidence-base to recommend it or not.

Stubbe et al. Genetic Influences on Exercise Participation in 37,051 Twin Pairs From Seven Countries. PLoS One , 1 (1), e22 2006 Dec 20.

Background: A sedentary lifestyle remains a major threat to health in contemporary societies. To get more insight in the relative contribution of genetic and environmental influences on individual differences in exercise participation, twin samples from seven countries participating in the GenomEUtwin project were used.

Methodology: Self-reported data on leisure time exercise behavior from Australia, Denmark, Finland, Norway, The Netherlands, Sweden and United Kingdom were used to create a comparable index of exercise participation in each country (60 minutes weekly at a minimum intensity of four metabolic equivalents).

Principal findings: Modest geographical variation in exercise participation was revealed in 85,198 subjects, aged 19-40 years. Modeling of monozygotic and dizygotic twin resemblance showed that genetic effects play an important role in explaining individual differences in exercise participation in each country. Shared environmental effects played no role except for Norwegian males. Heritability of exercise participation in males and females was similar and ranged from 48% to 71% (excluding Norwegian males).

Conclusions: Genetic variation is important in individual exercise behavior and may involve genes influencing the acute mood effects of exercise, high exercise ability, high weight loss ability, and personality. This collaborative study suggests that attempts to find genes influencing exercise participation can pool exercise data across multiple countries and different instruments.

CoI: none

Exercise, exercise, exercise ….

If you live in London it is impossible not to have gotten caught up in London-Marathon fever over the weekend.

Eliud Kipchoge won the London marathon in the second fastest recorded time  (two hours two minutes 38 seconds). Interestingly, Kipchoge wears an electric blue band on his wrist, where four simple words are written: “No human is limited”. He has obviously not met someone with advanced MS who is disabled.

In the study below people with progressive MS used up to 2.81x times more energy on average, for simple mobility tasks, compared to control subjects. The progressive MSers in this study accumulated an oxygen deficit and experienced fatigue and exertion when repeating simple motor tasks such as rolling over in bed, moving from a lying to a sitting or a sitting to standing position, walking and climbing steps. Reasons for why MSers use more energy is complex but part of it is due to deconditioning, i.e. simply being unfit.

We don’t know how the brain perceives fatigue but a higher oxygen cost during physical activity is measured by the body and results in a greater perception of fatigue. The reason why Eliud Kipchoge can run mile after mile at a pace no man or woman has done before is that he is conditioned to do so and has trained his brain to not feel fatigue.

“The mind is what drives a human being, If you have that belief – pure belief in your heart – that you want to be successful then you can talk to your mind and your mind will control you to be successful. My mind is always free. My mind is flexible. That is why I wear this band on my wrist. I want to show the world that you can go beyond your thoughts, you can break more than you think you can break.” Eliud Kipchoge.

Lessons from elite marathon runners and the findings from this study suggest that rehabilitation interventions that increase endurance during physical tasks will help reduce fatigue in people with progressive MS. The question now is to get NHS resources allocated to setting-up a National exercise and training programme for MS-related fatigue and to get MSers to buy into the benefits of regular exercise no matter how disabled they are. I know this is easier said than done, but that is no excuse not to get it done; it needs to be done.

Please note, it is also not only about exercise, but how you live your life.

Kipchoge’s believes that “living simply sets you free”. For nearly 300 days a year, he lives and trains at a simple training centre in Kaptagat, a tiny village in the Kenyan highlands. He is known as the “boss man” by his training partners but that doesn’t stop him cleaning the toilets or doing his share of the daily chores. If you are interested in being inspired please watch ‘Breaking2’ a Nike sponsored project to see if the 2-hour barrier for the marathon could be broken. It is not that Kipchoge came so close to breaking the two-hour barrier, missing it by a mere 25 seconds, but his philosophy on how to live that is so inspiring. I am in awe!

Devasahayam et al. Oxygen cost during mobility tasks and its relationship to fatigue in progressive Multiple Sclerosis. Arch Phys Med Rehabil. 2019 Apr 23. pii: S0003-9993(19)30257-6.

OBJECTIVE: To compare the oxygen costs of mobility tasks between individuals with progressive MS using walking aids and matched controls and to determine whether oxygen cost predicted fatigue.

DESIGN: Cross-sectional descriptive.

SETTING: A rehabilitation research laboratory.

PARTICIPANTS: 14 adults with progressive MS (54.07+8.46 years of mean age) using walking aids and 8 age/sex-matched controls without MS.

INTERVENTIONS: Participants performed five mobility tasks (rolling in bed, lying to sitting, sitting to standing, walking and climbing steps) wearing a portable metabolic cart.

OUTCOME MEASURE(S): Oxygen consumption (V̇O2) during mobility tasks, maximal V̇O2 during graded maximal exercise test, perceived exertion and task-induced fatigue measured on a visual analogue scale before and after mobility tasks.

RESULTS: People with progressive MS had significantly higher oxygen cost in all tasks compared to controls (p<0.05): climbing steps (3.60 times more in MS), rolling in bed (3.53), walking (3.10), lying to sitting (2.50), and sitting to standing (1.82). There was a strong, positive correlation between task-induced fatigue and oxygen cost of walking, (rs(13)=0.626, p=0.022).

CONCLUSIONS: People with progressive MS used 2.81 times more energy on average for mobility tasks compared to controls. People with progressive MS experienced accumulation of oxygen cost, fatigue and exertion when repeating tasks and higher oxygen cost during walking was related to greater perception of fatigue. Our findings suggest that rehabilitation interventions that increase endurance during functional tasks could help reduce fatigue in people with progressive MS who use walking aids.

How big is your need to exercise?

The evidence that exercise and I mean regular exercise is good for you is so overwhelming that it is hard to argue against the science. What I mean by this is that almost everyone accepts exercise as being good for the general population and for people with MS. The downside is that some MSers are so disabled and/or have so much fatigue that they find it difficult to exercise. I am prepared to accept the latter, but I am not prepared to accept this as a reason not to promote/prescribe exercise to the wider MS community. The question I have ‘Is how do we get MSers and healthcare professionals (HCPs) to exercise regularly?’



Are you interested in hearing more about what you can do?


The review below argues for applying behaviour change theory in the design of exercise programs and promotion efforts. How about making it a challenge? Can you walk? Can you run? 

In collaboration with the MS Trust, we are proposing starting a national exercise challenge/competition to get the MS community walking and running. We are proposing to use the Parkrun platform. Parkruns are 5km runs that are held each Saturday in a local park near you and allow you to complete 5km and log an official time. The challenge is to get every MS team in the UK, and possibly the world, to sign-up for the challenge and collect 5km runs. The team with the most Parkruns after a certain period of time, say a 6- or 12-month period, wins the challenge. 

When I refer to teams I mean all MS stakeholders linked to a particular MS service or team. This would not only include people with MS, but their HCPs, friends and families, MS Society members, ShiftMSers and even Pharma reps. The only rule we would propose putting in place is that a member of a particular MS team can only sign-up for one team. Another idea is to combine Parkrun effort with a fundraising campaign for the MS Trust. However, the fundraising would be voluntary and not necessary for participating in the challenge. 

I have suggested to the MS Trust that they create an annual Parkrun award for the team who wins the challenge and for the individual who completes the most Parkruns in the predefined period of time. Please note you can only really do one ParkRun a week and special one held on Christmas day and New Year’s day. 

Do you think this is a good idea? If yes, what should we call the challenge? With my bias, I would say #ThinkRunning. Or what about ‘The Running and Proud MS Trust ParkRun Challenge’?

I know the naysayers will be saying, but I can’t run. I know there are some of you who can’t run but then there will be others who are simply deconditioned (the medical term for unfit). For you, I would suggest starting the ‘couch to 5K’ programme that is designed to get you off the couch and running 5km in just nine weeks. The plan involves three runs a week with a rest day in between and a different running schedule each week. The NHS is promoting this using an app developed by the BBC, the programme or app builds you up gradually with a mix of running and walking.



The good thing about making this initiative into a challenge is that it builds teams (people are competitive) and it will increase social participation. Theis will, in turn, enhance social capital, which should improve outcomes as well. 

We have already had a discussion with one of Parkrun’s MS ambassadors and the MS Trust and they are very supportive of this initiative. Are you willing to give it a go? Please let us know even if it is helping with the naming of the challenge. Without your help, this won’t happen. 

Let’s Do It! 

Thank you. 



Motl et al. Promotion of physical activity and exercise in multiple sclerosis: Importance of behavioral science and theory. Mult Scler J Exp Transl Clin. 2018 Jul 9;4(3):2055217318786745.

There is an obvious disconnect between evidence of benefits and rates of participation in exercise and physical activity among people living with multiple sclerosis (MS). We propose that the problem with exercise behavior in MS (i.e. lack of broad or increasing participation by people with MS despite evidence of meaningful benefits) might be ameliorated through the inclusion of behavior change theory in the design of exercise programs and promotion efforts, as has been undertaken in other populations such as breast cancer survivors. This paper reviews Social Cognitive Theory as an example approach for informing interventions for increasing exercise and physical activity behavior outside of MS and provides an overview of current knowledge regarding the application of this theory for physical activity in MS. We then outline future research necessary for informing trials that design, implement, and test theory-based interventions for physical activity promotion in MS. If theories of behavior change are adopted for informing exercise and physical activity research in MS, we can take a major step forward in addressing the problem of exercise and physical activity participation that has plagued the field for more than 25 years.

CoI: I am a runner, albeit one with a failing right hip