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

23 thoughts on “Re exercise in MS: should we be flogging a dying horse?”

  1. I am really surprised to hear that “we don’t have a mature evidence-base to recommend” exercise for PwMS. And I can’t really say I have ever come across the idea that exercise might be speeding up degeneration. Have there been any studies that might back that theory up? In the meantime, I will continue exercising as it makes me feel better, sleep better, and function better.

    1. I think Robert Motl is not saying that. He is simply stating that we have a lot more evidence to generate to define the optimum exercise programme for individuals with MS. He is also concerned that in some contexts exercise, particularly vigorous exercise, may make MS worse. I have several patients who exercise to the point of exhaustion because they think they are doing themselves well; this may not necessarily be the case.

      I think we the MS community are saying exercise is good, but as with any lifestyle or behavioural intervention, it needs a bit of common sense. For example, if you can’t walk properly maybe you should not overdo lower leg exercises and focus on the upper body for cardiovascular fitness. Another option would be swimming. Does this make sense?

      1. I was diagnosed at a young age. Throughout my life I have adjusted my exercise as my MS progressed. I was working full time and this was part of my life. I couldn’t walk far and have never been able to run. However, eventually the activity that suited me best was swimming. I did this at least three times a week after work. I’ve never been on a DMT or had an MS nurse until recently. I’ve suffered some serious co-morbidities that had I not been fit would have had consequences. On reflection, I know I would not change a thing. I feel I have done everything I could and have no regrets.

      2. My question would be “at what point does inactivity become more of a threat that the MS itself?”

        I agree that over-training can have functional implications for an individual and common sense should be applied.
        Common sense would also suggest that being more active is better than being less active (up until a certain level).

        The challenge of encouraging an individual to be active/exercise spreads way beyond the world of MS to most of society…

  2. Re: “exercise speeding up neurodegeneration in MS?”

    From this supposition then exercise leads to inflammatory processes?

    1. No. There is no evidence that exercise promotes inflammation. What I am suggesting is that it will make the damage nerves/axons work harder, i.e. fire more frequently. The latter may put an extra energy burden on the nerve which may cause vulnerable nerves to die earlier. The latter is a hypothesis and is not a fact. What we need to do is study exercise in this situation to see what its effect is on vulnerable motor pathways.

  3. I’m of the opinion that it’s important to be targeted with exercise. If you ‘just do it’ then you naturally tend to favour pathways and muscle groups that are stronger which can make things worse or create new problems. This is particularly important with MS damage. I have a tendency towards certain patterns of weakness, but with carefully programmed exercises the correct muscle groups (and the associated neural pathways) are recruited and strengthened. These other muscles are often quite small and concerned with stability and control, but they are very important. The benefit of this extends beyond the exercise session because I then go out into the world and use those same muscles in the correct fashion throughout the rest of my life. This patterning is therefore continually reinforced, and as I get better we tweak the program some more.
    This approach (working with an exercise physiologist) has been life changing. I have been NEDA for 6 years after alemtuzumab, but extensive damage remains. Despite this, my mobility, flexibility, and strength are all continually improving. When I’m having a bad day I no longer think ‘oh that’s just MS’. Instead I know that there’s almost certainly something I can do to help it. I’d encourage anybody on the fence to rethink their attitudes to exercise. It doesn’t have to be hard, you just have to be smart about it.

    1. I agree with you about using targeted exercise. This is why seeing and doing it with a physiotherapist is important. However, if you have very early MS with no physical disability this will not be necessary.

  4. Before I was diagnosed I trained for London marathon through a relapse that gave me altered sensation in both legs. I didn’t want to skip a long run. I had a couple of pains where I must have put a foot wrong, but by the end of that run I felt so much better. Of course by the start of the next day it was back.

    Me and my brother are adopted so in terms of genetics, I only have him for reference and we have different birth fathers. We both have hypermobile joints, I have found exercise that helps mine, he is not interested and would rather stay in pain.

  5. Our study suggests that stroke patients can perform higher intensity walking exercises and more difficult tasks than previously thought possible. We need to move beyond traditional, low-intensity rehabilitation to challenge the nervous and cardiovascular systems so patients can improve function and perform better in the real world.
    Watch the movie
    High-intensity step training boosts stroke survivors’ walking skills

  6. Interesting. I know how exercise makes me feel, and that is why it’s part of my routine. Didn’t doctors use to tell people with MS not to exercise because it was bad for them? It’s almost impossible to know what to do anymore. One day something is great and encouraged, another day you’re left questioning. Very frustrating. Can’t be worse than the side effects from the DMT’s .

    1. Re: “It’s almost impossible to know what to do anymore.”

      I think the message hasn’t changed, i.e. exercise is good for you and should be part of any holistic MS management plan. However, it needs to be done with common sense and if you can’t exercise, because of physical disability or you hate it, don’t feel guilty.

  7. Doing more harm then good with exercise by overusing healthy nerves could also imply that Ampyra / Fampyra could speed up degeneration of these pathways. It’s been a theory for a while now. Others say it could aid in neuro plasticity, but I’m not sure about that. What’s your take on the use of Ampyra in the longer term?

    I find it very difficult to exercise with an Edds of 4.5 / 5. I work almost full time mostly out of home, but if I exercise I’m often to tired to work accurately or for instance go out later that day to do fun stuff. Even a little exercise really wears me out and can make walking even more difficult because of combined weakness and spasticity below my chest. Cooking is also like working out for me as I can stand on my feet for 20 to 30 minutes tops before I get weak in my torso / core and my legs and feet begin to hurt. Has been like this since transplant back in 2016. So at least it’s stable.

    That’s why I often compare my MS caused disability with an Incomplete SCI or Myelitis Transversa as my MS is stable / in remission after IRT. I’ve been through 3 different rehabilitation courses with no lasting effect. Every time I went I had to crash on the couch for the rest of the day and the day afterwords was even worse because of muscle ache which increased spasticity and weakness. So I’m actually do not know what’s next as ‘if you don’t use, you loose it’ repeatedly crosses my mind. However cognitively I’ve never been better and would rather use my brain to be able to work and Ampyra does help with my energy during the day. It still a dilemma.

  8. Very interesting and important post Prof G!!
    Currently there are no evidence that suggest exercise to exacerbate MS disease progression. In fact, the existing evidence points towards the opposite! Together with Prof Ulrik Dalgas (Denmark), we recently published an update on this very topic:
    As for the challenges of getting people engaged in exercise, this is indeed a challenge. Yet, numerous research groups are currently addressing this issue…

  9. Good article – clearly explaining the complex topic.
    I believe the MS Society did a literature review a few years ago and there was sufficient evidence to support them recommending exersize for PwMS. But of course it needs to be appropriate.
    If its fun and adds to our “social capital” then even better (personally cheesy music at aqua-aerobics always improves my mood!). I think MS Society launched videos on their website for those who cant get to a suitable class.
    I would recommend MS therapy centres so that you do the right exersizes foryour MS. It always meets our specific needs plus we learn relevant things like how to reduce spasms, how to get up when you fall over at home, pelvic floor exersizes etc!
    For those that are not mobile they may have standing frames and just to be able to be upright is good for morale, digestion etc.
    The feeling of “doing something” to try and help is powerful.
    But being obsessive or feeling guilty is never good!

  10. Thank you very much for this post.
    It discusses so many aspects of my own MS journey.
    I live in New Zealand and was diagnosed ppMS 7 years ago at age 55.
    My exercise regime is bordering on obsessive, I know. Today is the 18th day of 2020 and I have been on my road bike 16 of those ! My average ride is 2 hours , covers between 25 to 45 km and almost always involves excellent coffee at the halfway point ! I’m able to keep both feet on the pedals by employing SPD cleats and pedals. I generally try to target 200 km/week.
    I need to ride regularly to maintain good ‘headspace ‘. I also believe that any cognitive issues are also minimised by my exercise regime, but I really have no proof of that. I do experience sore muscles but really have no problem dismissing that. Also , fatigue , where all I want to do after a ride is sit and sleep, is an issue. But I believe that my nocturnal sleep habits contribute to this issue just as much as my exercise regime . The explanation for my current frequency of rides is that it is currently summer school holidays in New Zealand and my wife is a teacher and we ride as a couple. She suffered a serious bought of GBS twelve months ago and so we see huge benefits of the exercise to us both. Point to note; the cycling is just so good for our relationship ; she is able to see me almost as I was prior to my diagnosis !
    Note that my EDSS has never been assessed but I really don’t walk flash.
    I was a competitive cyclists and a keen distance runner in my younger days and I’m convinced that this makes it way easier for me to exercise now. Also , in reference to the article, I value my early interaction post diagnosis with two neuro-physiotherapists as extremely valuable. I have a tertiary science degree but previously knew nothing of neuroplasticity !
    I am occasionally held up in my country as an example of what pwMS should do re exercise. I’m a little uncomfortable with that profile as I know that I’m advantaged.
    Finally, the genetic angle is interesting; my heritage is part Norwegian and my Father was an athlete !
    Thanks very much for the discussion. There’s still so many questions !

    1. It’s always uncomfortable and misleading to be held up as an exemplar.
      One knows too well that everything is the result of luck and privilege

  11. I’m giving a shout out for people who dislike exercise, I’ve never been a fan, although I’ve always been slim, and active. Less so since MS, and even less so since I’m 62. Interested to read about a genetic pre-disposition to like or dislike exercise. I’m probably in the latter camp, although I greatly admire those who like exercise. Since walking has become more difficult, I can do two 10 minute walks a day with my dog, even that amount causes my pain levels to rocket. Neuropathic pain isn’t a fan of too much exercise I find. I think to exercise or not is down to the individual but there is a some ‘pressure’ to get exercising with chronic conditions, and if you don’t or can’t, you can feel judged, something else to feel bad about as if you don’t have enough. Good article Prof G.

  12. Hi Prof G, thank you for your interesting post and all the other comments too! I’m in the middle when it comes to exercise, I neither like it or dislike it! It is interesting to read all the obvious pros and possible cons of exercise, but what I think should happen for anyone with any neurological condition, is that you should have a plan in place to enable you to keep moving (for the other bits of your body that need you to move, in particular, your heart and gastro) & to get you out of the house. Our bodies albeit in need of a few replacement bits, are remarkable & can defy a lot of science. Strokes, whereby mobility is regained after intensive exercise & determination. Neurological diseases – again albeit meds assist or just extreme good luck if mobility is improved & or feeling/sensations come back. I think it should be personlised, supported, understood (if you can’t do certain things) limits & most importantly of all – PTs, Physios, Drs etc. should all be aware of your health condition(s) & to support you with moving, stretching & massage. Not expect too much & give you encouragement when you are feeling low with pain & stiffness. There’s nothing worse than to be given an exercise target that is to ‘fit all’ – the pressure & embarrassment that you feel with the condition’s limitations (especially if you can’t get up off the floor!) needs to be empathetically managed too! A slow but manageable walk in the park, seeing the trees, animals & other people cheerfully saying hello – can be worth a whole workout at the gym or in a swim in a cool & crowded s/pool. 🙂

  13. I echo the comment by Lars Hvid, linking Ulrik Dalgas’ paper suggesting exercise as medicine:

    Around 1,000 of the 1,700 people who attend our MS Centre in Glasgow (some coming from quite far afield) attend physio-led exercise classes (note they are led by an experienced physio team). There are 13 different classes, designed for people of all levels of physical ability/disability. The subjective and objective benefits of these classes are carefully assessed and the evidence of benefit is particularly strong.

    I agree with the appeal to “common-sense” but wonder if we will not look back, in years to come, and lament the failure to adopt a policy of recommending an individually-tailored exercise plan for every person with MS, from the out-set, based on their own capabilities and their personal objectives. This is a critical omission.

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