I have said many times before that I believe exercise is the most underrated and under-utilised MS disease-modifying therapy (DMT). Why does it have to be a belief?
I agree that exercise is critical as I think my years of being a runner hid my MS. The symptoms I did have were few and far between and always written off as something else. Unfortunately, MS caught up to me when I took a break from running for a few months when I turned 50. I think it was the perfect storm...not running, entering menopause, low Vitamin D...that had me transition from my (previously unknown) RRMS state to SPMS with disability progression. I can no longer run and it makes me quite sad. There is no substitute for what I received from a good run, but I have a Peloton and will continue to exercise.
Good luck with this, very important to support MSers in this way. I am no gym bunny but my sadly increasingly feeble exercise routine and vestibular eye gym, in the absence of any DMTs, are the only things that keep my SPMS self going! Have bought vibration plate to replace exercise bike I can no longer get on and off without enormous faff, to try squats and lunges on and try to rebuild glutes and thighs...I was told to avoid exercise when diagnosed 30+ years ago at St George's London. Glad I ignored them and kept trying.
I Studied (a BSc) Sport Science & understand the importance of exercise to health (Physiologically, Psychologically & Sociologically). I have had very active MS for over 17 years & feel that regular exercise has played a significant role in controlling my progression into disability,
I'm mid-30s male and would apply for this experiment if I qualified. I'd only say that the test period should maybe be extended to allow for recuperation from the first lumbar puncture as it can take a couple of days (I've experienced up to a week) to recover from a lumbar puncture and get back to exercising if you have the bad luck to get headaches from it.
Really interesting! Do you think HIIT is the best bet then? I run long distances and go bouldering regularly, but reckon maybe I should try something a bit more acutely intense if that could be more beneficial.
In principle I would definitely participate in such a study. I have SPMS and would welcome formalised exercise as part of my disease management. Practical issues would prevent prevent my participating. Things like Location.
The MS Society commissioned a literature review about 5 years ago looking at whether there was scientific evidence to support recommending exersize to PwMS. Apart from the few UK MS studies their investigation included variety of countries and medical conditions. There should be a report which you may find useful.
Spoiler alert yes in some ways certain exersizes were proven to help MS - of the top of my head I think there was strong proof for helping fatigue, balance and muscle wasting.
MS Therapy centres are a brilliant lifeline for people physically and in terms of "social capital" so it frustrates me that most of us have found them by accident (rather than "prescribed or recommended by health professionals).
Prior to diagnosis I taught step aerobics 3x week and circuit training plus walking and cycling. Now I can't do step aerobics or circuit training but up to my summer relapse I cycled or/and walking as well as pilates 4x a week. Now I can only do stretches and very slow spinning as well as short slow walks so while I can't wait to be able to do more not sure I qualify for your study. Also I have no treatment yet.
I do a bit of running short distances 3-5k which I love, I only started post MS and wish I’d done all my life. The only thing I find is that although it seems to help fatigue overall, I am finding that I go through periods where I can’t face exercise which I think is menopause fatigue rather than MS. I’d be willing to take part in this research - would just need a bit of reassurance on the LP as never had one.
I filled in the Q and want to take part. I'm glad you say that LP is less invasive than in the past. I never had headaches or side effects, but the problem was getting any fluid at all out of me. I had what Edward Fathers my neuro then, called a 'dry spot' so had to come back in for another attempt. I found him hilariously funny. As he was conducting the first attempt he said, "Some people can still walk after this." I love that sort of joke, but wonder if other patients would have enjoyed it as much as me.
I was rubbish at sport at school, which is maybe why I have always exercised as a sort of one-in-the-eye response to my awful no- inclusive PE teachers who thought they could humiliate me. They failed. I still run in my 70s and did some resistance work in the gym this morning. Did my first swims for 2022 in January and I also do Pilates and T'ai Chi. I'm certain the exercise has materially improved my disease course from where it might have been.
Hi Prof. I’d like to participate. As you know MS progressing but I’m a big believer in the benefits of exercise - it’s hard at times but it’s hugely necessary. Would like to be a part of this. Cheers Natasha Doueihi
Like another commentator, I think the fact that I did so much sport probably masked my MS to begin with. Things I now see as being almost certainly MS related I often put down to sport related injury. But we are where we are. I've filled in the questionnaire and would be happy to take part in this research if eligible but, like others have said and I said in my questionnaire responses, my one caveat is the lumber puncture. Looking back, I think I was probably a guinea pig for a junior doctor, but I was prodded (painfully) for at least an hour and when the procedure was finally completed had a nightmare headache for weeks. A guarantee that this would not happen again ... please.
Hi Prof G, I have completed the survey & I confirm that I would be interested in taking part. I can only comment on how I am after exercise, but also offer a general comment about most of the folk who are taking part in my pilates class each week. We all have find it extremely difficult to motivate, feel that we can complete the exercise and overcome our embarrassment (well me really) about getting up from the floor and using our limbs in a co-ordinated way! Taking out the mix other health issues, i.e. back or knee problems in my case also, I do believe that a 'prescribed personalised exercise(s) would be the way this would work. Prescribed it has to be, as I've found a lot of personal trainers, physios and general addicted exercise folk - all do not take into consideration the limitations and difficulties pwMS suffer with. They are generalised about how things should be carried and can therefore brush off other health issues too - which then starts a contagion of demoralisation and lack of understanding. Each of us are different, age, capabilities, difficulties and in some case purely unable to do 'exercise' yet it can be adapted to give you a great sense of achievement and delight that you've become part of a group (weekly) and can feel so much better having taken part and moved.
If we encourage each other to belong to a weekly (daily) set-up and commit to something that we feel is for us folk with someone who is trained to understand the condition of MS (and other neuro conditions) it can be so much more beneficial than reaching for drugs to enhance your mood and body.
This is extremely important and I wish you well with gaining enough support to take this further. I do believe you are on to something.... We just need to educate about the disease and who is supporting the pwMS in exercise and to ensure they are the right type and are qualified to ensure that their condition will be made or feel worse by taking part.
Mar 9, 2022·edited Mar 9, 2022Liked by Gavin Giovannoni
Not to be the glass half full person (I’d totally be willing to be part of the study) but if exercise is so effective for PwMS then how come I always have exponential fatigue after? I do low intensity exercise 4-5x wk and always have the transient worsening of symptoms due to body temp increases and then am super fatigued compared to the days I don’t exercise. I keep doing it because I know it’s good for me and has helped my leg atrophy but just curious your thoughts.
I agree that exercise is critical as I think my years of being a runner hid my MS. The symptoms I did have were few and far between and always written off as something else. Unfortunately, MS caught up to me when I took a break from running for a few months when I turned 50. I think it was the perfect storm...not running, entering menopause, low Vitamin D...that had me transition from my (previously unknown) RRMS state to SPMS with disability progression. I can no longer run and it makes me quite sad. There is no substitute for what I received from a good run, but I have a Peloton and will continue to exercise.
Interesting article: https://www.activemsers.org/hiit-for-ms-guide
Good luck with this, very important to support MSers in this way. I am no gym bunny but my sadly increasingly feeble exercise routine and vestibular eye gym, in the absence of any DMTs, are the only things that keep my SPMS self going! Have bought vibration plate to replace exercise bike I can no longer get on and off without enormous faff, to try squats and lunges on and try to rebuild glutes and thighs...I was told to avoid exercise when diagnosed 30+ years ago at St George's London. Glad I ignored them and kept trying.
I Studied (a BSc) Sport Science & understand the importance of exercise to health (Physiologically, Psychologically & Sociologically). I have had very active MS for over 17 years & feel that regular exercise has played a significant role in controlling my progression into disability,
I'm mid-30s male and would apply for this experiment if I qualified. I'd only say that the test period should maybe be extended to allow for recuperation from the first lumbar puncture as it can take a couple of days (I've experienced up to a week) to recover from a lumbar puncture and get back to exercising if you have the bad luck to get headaches from it.
Really interesting! Do you think HIIT is the best bet then? I run long distances and go bouldering regularly, but reckon maybe I should try something a bit more acutely intense if that could be more beneficial.
In principle I would definitely participate in such a study. I have SPMS and would welcome formalised exercise as part of my disease management. Practical issues would prevent prevent my participating. Things like Location.
The MS Society commissioned a literature review about 5 years ago looking at whether there was scientific evidence to support recommending exersize to PwMS. Apart from the few UK MS studies their investigation included variety of countries and medical conditions. There should be a report which you may find useful.
Spoiler alert yes in some ways certain exersizes were proven to help MS - of the top of my head I think there was strong proof for helping fatigue, balance and muscle wasting.
MS Therapy centres are a brilliant lifeline for people physically and in terms of "social capital" so it frustrates me that most of us have found them by accident (rather than "prescribed or recommended by health professionals).
Prior to diagnosis I taught step aerobics 3x week and circuit training plus walking and cycling. Now I can't do step aerobics or circuit training but up to my summer relapse I cycled or/and walking as well as pilates 4x a week. Now I can only do stretches and very slow spinning as well as short slow walks so while I can't wait to be able to do more not sure I qualify for your study. Also I have no treatment yet.
I do a bit of running short distances 3-5k which I love, I only started post MS and wish I’d done all my life. The only thing I find is that although it seems to help fatigue overall, I am finding that I go through periods where I can’t face exercise which I think is menopause fatigue rather than MS. I’d be willing to take part in this research - would just need a bit of reassurance on the LP as never had one.
I filled in the Q and want to take part. I'm glad you say that LP is less invasive than in the past. I never had headaches or side effects, but the problem was getting any fluid at all out of me. I had what Edward Fathers my neuro then, called a 'dry spot' so had to come back in for another attempt. I found him hilariously funny. As he was conducting the first attempt he said, "Some people can still walk after this." I love that sort of joke, but wonder if other patients would have enjoyed it as much as me.
I was rubbish at sport at school, which is maybe why I have always exercised as a sort of one-in-the-eye response to my awful no- inclusive PE teachers who thought they could humiliate me. They failed. I still run in my 70s and did some resistance work in the gym this morning. Did my first swims for 2022 in January and I also do Pilates and T'ai Chi. I'm certain the exercise has materially improved my disease course from where it might have been.
Hi Prof. I’d like to participate. As you know MS progressing but I’m a big believer in the benefits of exercise - it’s hard at times but it’s hugely necessary. Would like to be a part of this. Cheers Natasha Doueihi
Like another commentator, I think the fact that I did so much sport probably masked my MS to begin with. Things I now see as being almost certainly MS related I often put down to sport related injury. But we are where we are. I've filled in the questionnaire and would be happy to take part in this research if eligible but, like others have said and I said in my questionnaire responses, my one caveat is the lumber puncture. Looking back, I think I was probably a guinea pig for a junior doctor, but I was prodded (painfully) for at least an hour and when the procedure was finally completed had a nightmare headache for weeks. A guarantee that this would not happen again ... please.
So great, love love love!
There’s no doubt in my mind that your study will prove exercise slows the disease process.
Hi Prof G, I have completed the survey & I confirm that I would be interested in taking part. I can only comment on how I am after exercise, but also offer a general comment about most of the folk who are taking part in my pilates class each week. We all have find it extremely difficult to motivate, feel that we can complete the exercise and overcome our embarrassment (well me really) about getting up from the floor and using our limbs in a co-ordinated way! Taking out the mix other health issues, i.e. back or knee problems in my case also, I do believe that a 'prescribed personalised exercise(s) would be the way this would work. Prescribed it has to be, as I've found a lot of personal trainers, physios and general addicted exercise folk - all do not take into consideration the limitations and difficulties pwMS suffer with. They are generalised about how things should be carried and can therefore brush off other health issues too - which then starts a contagion of demoralisation and lack of understanding. Each of us are different, age, capabilities, difficulties and in some case purely unable to do 'exercise' yet it can be adapted to give you a great sense of achievement and delight that you've become part of a group (weekly) and can feel so much better having taken part and moved.
If we encourage each other to belong to a weekly (daily) set-up and commit to something that we feel is for us folk with someone who is trained to understand the condition of MS (and other neuro conditions) it can be so much more beneficial than reaching for drugs to enhance your mood and body.
This is extremely important and I wish you well with gaining enough support to take this further. I do believe you are on to something.... We just need to educate about the disease and who is supporting the pwMS in exercise and to ensure they are the right type and are qualified to ensure that their condition will be made or feel worse by taking part.
Not to be the glass half full person (I’d totally be willing to be part of the study) but if exercise is so effective for PwMS then how come I always have exponential fatigue after? I do low intensity exercise 4-5x wk and always have the transient worsening of symptoms due to body temp increases and then am super fatigued compared to the days I don’t exercise. I keep doing it because I know it’s good for me and has helped my leg atrophy but just curious your thoughts.