Sarcoidosis, Exercise, and Nutrition – 2024 Sarcoidosis Patient Day

Transcript 

Graham Bloye: We’ve invited Professor John Brewer to speak next about the importance of exercise and nutrition for well-being as a patient with sarcoidosis.

John is currently visiting professor at the University of Suffolk specialising in sport and exercise science. Ahead of the 1990 World Cup in Italy, he was head of Human Performance for the Football Association. He obviously knows his stuff as England came forth that year and it’s still their best result since that win in 1966!

Professor John Brewer: By way of expanding on that background, I’m a professor of sport and exercise science, and have spent most of my life working in sports science and also particularly being active alongside that, but like many of today’s speakers, I was diagnosed with multi-organ sarcoidosis in 2011. Whilst I don’t know exactly why that happened, one thing that has interested me is the triggers that perhaps initiate sarcoidosis and in 2011, I was embarking on an overseas trip to the Ivory Coast, on a work trip, and consequently had to have a number of vaccinations at very short notice, all at pretty much the same time. The consultants who I’ve worked with since then, put my multi-organ sarcoidosis down to the trigger that those vaccinations created within my body. We’ll never know whether that was the case, but it’s certainly something that has interested me.

Subsequent to that, I have continued to stay actively involved in exercise because I passionately believe that exercise has real beneficial effects, both in offsetting many of the symptoms of sarcoidosis, but also in helping to keep people healthy and to mitigate the risk of many of the other diseases and illnesses that can be associated with a lack of fitness. Partly as a result of that interest, both personally because of my sarcoidosis and professionally as a sport and exercise scientist, I approached Dr. Hannah Moore and her team at Kingston University in Southwest London because I knew that they were doing work to look at the impact of physical exercise on patients with sarcoidosis. The area hasn’t been researched that much but what we decided to do was to conduct a review study, which has subsequently been published where we looked at 21 studies that were undertaken around the world between 1986 and 2018 that involve 1,442 patients who had been diagnosed with sarcoidosis. And we decided within that review to look at what the effect on exercise capacity was of sarcoidosis and also if we could, really importantly, see what benefits exercise could bring to patients who already had sarcoidosis. Perhaps not surprisingly, when we looked at the 1,442 patients, we found that there was a reduced level of physical activity within them, that they had particularly reduced cardiovascular fitness, that’s that ability to get oxygen through air that we breathe in, into the lungs and into the working into the body when we exercise.

There was also a decrease in muscle strength. Again, perhaps not surprisingly and associated with all of those, as we see in many sarcoidosis patients an increase in fatigue, both generally during the day and particularly when they exercise. So these were nothing new. These were findings that we were expecting to see but they re-emphasise the fact that sarcoidosis does have that reducing effect on physical capacity and the ability of people to exercise. And of course, that can become a vicious circle as you feel less able to exercise, so you do less exercise, you then decondition even further and that ability to exercise reduces still further. I think what was also interesting, and again, perhaps not surprising, was that within those patients the ability to exercise and that reduction in physical capability, also increased the risk and the incidence of other life-changing illnesses that weren’t actually related to sarcoidosis.

So we saw again, perhaps not surprisingly, an increase in obesity amongst the patients, higher blood pressure, higher levels of cholesterol, higher risk of heart attack, and other life-threatening illnesses such as strokes.

So that deconditioning effect of sarcoidosis not only was having an impact specifically on our ability to exercise but it was increasing the risk of other potentially life-changing and indeed life-threatening diseases as a result of not exercising because of sarcoidosis. However, I guess, moving on to the better news, the good news.

We found that within that group, the patients who actively took a decision to exercise

were able to reverse many of the downturns, many of the effects of sarcoidosis. Particularly pulmonary sarcoidosis, where we were able to see an increase or an improvement in lung function, in lung capacity, and that by exercising, we could offset

the downturn, the decline in physical capacity, and also importantly increase the ability of those patients to undertake physical exercise. So that was a really important finding from the review paper, the review study that we did. I know that later on today there will be further discussion on research, this is clearly an area where we haven’t yet explored the real benefits of exercise for sarcoidosis patients and there is much more scope for further research in the area.

But the findings, certainly so far, from our review study, were very positive and showed that exercise had real beneficial effects on the majority of people with sarcoidosis who were able to undertake exercise. I think what we saw particularly was, as I said, improvements in cardiovascular fitness. We saw lung function capability improving, even with patients with pulmonary sarcoidosis,  there is still that innate ability to develop the lungs to improve that oxygen uptake capacity. And bear in mind that when we breathe in about one fifth of the air that we breathe into the lungs consists of oxygen, 20.93%. Our lungs are then tasked with extracting as much of that oxygen as possible from the 20.93% that goes into the lungs and then associating that with haemoglobin in the blood and transporting that oxygen around the bloodstream to the muscles where that oxygen is given up, effectively, into the muscle fibre to help in the provision of energy. We saw without any shadow of a doubt that that capability, the capability to transport oxygen from the lungs to the muscles, was improved with patients who had sarcoidosis, even pulmonary sarcoidosis, who undertook exercise.

So we know that the mechanism of oxygen transportation can be enhanced in patients with sarcoidosis with appropriate exercise. We also found that within the muscle itself, there was a greater ability to take oxygen from the bloodstream and transport that oxygen into the muscle to help in the creation of exercise. And very importantly as well, we also saw that with appropriate strength training there was an ability to lay down protein within the muscle fibre and to increase muscle strength. All of those are exactly the same benefits of exercise that we see in patients who don’t have sarcoidosis. But we were really pleased that the review studies – and bear in mind, we didn’t actually do the research, we just assimilated all the research from around the world – all of those findings from all those studies were showing that patients with sarcoidosis can still get the same benefits from exercise that individuals without sarcoidosis can also get.

So I guess the question then is, what exercise should people do? Well I’m not going to advocate the type of exercise that I do!  Since I was diagnosed with sarcoidosis, I’ve been able to run marathons. I still race regularly and run 10Ks frequently. My wife and I have just come back from a walking holiday in the United States. So I’m a big believer in as much exercise as you can. But I’m very, very aware that that is not a one size fits all type of exercise and really it comes down to, I think, what people have been saying already this morning. Which is listening to your body and being aware of what type of exercise suits you best. One of the things I get very frustrated about are guidelines which say that you must exercise for 30 minutes, three, four, five times a week. Because again, that’s putting a very finite recommendation or definite recommendation, on the type of exercise that you could do.

I mean, if somebody’s recommending four times a week at 30 minutes, it’s almost suggesting in itself that twice a week for 15 minutes doesn’t work well. Absolutely twice a minute for 15 minutes will work if you are doing very little if anything at all at the moment. The key thing with any sort of exercise, as I just said, is to listen to your body, to start off slowly, to work as my old professor at Loughborough many, many years ago used to say, at a tolerable level of discomfort, something that you feel that you can cope with without getting horrendously out of breath, without feeling too tired. And then once you can accomplish that, to build up gradually, to not get carried away to just gradually increase the duration of the exercise that you’re doing. If you start off just by doing a five or ten minute walk, from doing nothing then that’s fantastic! Have a day’s rest, do that again the following day. And then build up, add on an extra two or three minutes and go for longer until you find that you can tolerate a little bit more and then a little bit more. So it really is a tolerable level of discomfort, that is appropriate, not overdoing it. You don’t have to become a gym bunny and pump weights and work to a high level of intensity. And certainly the one thing that I do not believe in is the old adage of no pain, no gain. If you are hurting too much then really you’re doing it, you’re exercising at too high a level. It needs to be progressive. It needs to gradually improve as the exercise, but it doesn’t have to exhaust you completely.

Otherwise, as they say, you’re doing too much. And if you’re finding that exercise is painful and hurting, then quite frankly, it’s unlikely that you’ll continue doing it for too long because it becomes too hard and it becomes something that you’re not looking forward to. And what I would also advocate is that you find a family member, a partner, a friend, and you ask them to exercise with you and then you’ll find that that joint motivation will help you to continue exercising and it’ll make it a social occasion rather than something that you don’t look forward to.

And bear in mind as well, I spoke a few minutes ago about the other conditions that can have an increased risk of suffering from if you do a lack of exercise they will of course also all benefit from exercise. So we know that regular exercise can burn calories that in turn will hopefully start to reduce levels of cholesterol, it may well reduce your body fat percentage, it will reduce your weight and reduce the risk of high blood pressure and so on. So all of those other illnesses that you can suffer from through a lack of exercise as a result of sarcoidosis can also be mitigated by regular exercise and we even know from many studies that conditions such as diabetes and even certain cancers can be reduced if you exercise regularly. The key thing is not to feel that you have to run a 5K, a 10k or a marathon, but you do what is right for you. And again, the message that keeps coming across this morning is listen to your body. And there’s plenty of help out there on websites that will give you advice on appropriate exercise.

Set yourself a goal. I’ve mentioned my sport, which is running. Parkruns, 5Ks have become increasingly popular. Free to enter events on a Saturday morning, great social events, where you can walk and jog as slowly as you want to and still get great enjoyment and great benefits from exercise.

I’ve got a couple of minutes left and I know I was asked to talk about diet as well. Diet is in some ways a tricky one because there is no simple answer to any one food that will improve your immune system. And in fact, if you go on to Food Standard Agency

websites, you’ll find that you’re not even allowed to make a claim. for any food to boost the immune system. However, we do know that the immune system does benefit from vitamins A, B, C, B12 and vitamin D. And given the proviso that Professor Hart made earlier about calcium and so on, making sure that you have plenty of fresh fruit in your diet, plenty of variety in your diet are all good ways of ensuring that you will take in the vitamins that you need to sustain your immune system. And I hesitate from using the words “boost your immune system” because as I say, there are very few foods, if any, out there that will actually boost your immune system to becoming above normal.

We are sadly starting to enter the winter where sunlight is less. Sunlight is required for vitamin D. Vitamin D is an important vitamin to maintain the immune system, so again with certain provisos, some form of supplement to boost your vitamin D during the darker winter months may be of benefit. But certainly, as I say, plenty of fresh fruit, plenty of fresh vegetables, nuts and seeds will all help to give you a calorie rich diet, but also one that is high in a variety of different vitamins and minerals that will help to sustain your immune system and keep you healthy.

And please do bear in mind, of course, that when you exercise, you burn calories. You take in calories when you eat, and going back to my comments around obesity, if you take in more energy than you expend, whoever you are and however much exercise you do, you will gain body fat. You will eventually put on weight because that extra energy has to go somewhere. So please bear in mind that an energy balance, balancing your intake with your expenditure is absolutely critical because the more you put on weight, the more strain you will be putting on your heart and your lungs and other organs in the body. And the more that physical capability you have will decrease. So ensuring that you’re in energy balance as well as having a variety of vitamins and minerals to maintain your immune system will be absolutely critical, particularly, as I say, as we enter into the longer, darker winter months.

So Graham, I think that’s my 15 minutes up. I hope I’ve given you a brief insight into the benefits of exercise, certainly the results of the studies that we reviewed, that we published.  Happy to take any questions that might be around.

Graham: Thank you very much. I mean, there’s no danger of me becoming a gym bunny, I can assure you, but I do quite like food! Now, in fact, the questions today fall into two groups, really. And food is probably the most common question we’ve got so I’ll give you three food questions. The first one – is there a link between certain foods or exercises that actually improve energy levels for sarcoidosis patient?

John: Well, we have two sources of energy within the body on the whole. So one is body fat and one is carbohydrate, which is stored in the body as glycogen. When we’re sitting around as we’re doing now, the body will be burning a fair proportion of body fat because fat is very beneficial in terms of the amount of calories that you get and if you had a handful of fats, shall we say, in the same size volume of carbohydrate, they’d actually be twice as much energy in the fat than there is in the carbohydrate. The problem with the energy that we use from fat is it can only provide us with energy at a relatively slow rate. That’s why we use it at the moment when we’re sitting down, perhaps when we stand up and walk around. The moment we want to do something more vigorous at a higher intensity, the body automatically defaults to our carbohydrate stores, our glycogen stores. So we eat carbohydrate, that’s stored as glycogen in the muscle and the liver. That’s the rapid response energy store. So, in order to have energy for more dynamic activities, maybe climbing stairs, maybe cycling, maybe doing something that involves more vigour, it’s carbohydrate that is the key energy store. So the message really is to avoid too much fat in the diet, because if you have a fair or a high proportion of fat in the diet, it’s very calorie dense. So it quickly causes weight to put on and when you put that weight on, as I said a few moments ago, that puts extra strain on the body.

But carbohydrate, on the other hand, you can eat more of it without putting on weight and it also provides you with energy. Now, carbohydrate has had a relatively bad press at times recently, but increasingly, we know that carbohydrate is that energy store that we need for more vigorous activity. It’s something we’ve known for many, many years. In fact, my early research back in Loughborough was focusing on that particularly with regard to exercise. So my message would be not too much fat because that’ll put weight on and cause you to fatigue, but make sure you’ve got plenty of carbohydrate in the form of things like bread, pasta. And so that will give you the energy that you need to stay healthy and reduce the risk of putting on weight.

Graham: Inflammation obviously features regularly with sarcoidosis patients and there’s a whole range of anti-inflammatory supplements and foods out there. Do they actually help? And if they do, are there any specific ones we should be looking at?

John: Again, it’s a very good question and there’s no easy answer and I worked for a pharmaceutical company many years ago where we were looking to make claims on areas like inflammation and the immune system and so on. And absolutely, you are not allowed as a food manufacturer or a supplement manufacturer to make those type of claims without breaking the law. So there is nothing out there that is ‘the magic bullet’ towards improving your immune system or significantly reducing inflammation. Ibuprofen is clearly something that people often do take as an anti-inflammatory. It’s certainly used a lot in the sporting sector. But otherwise, I would say, there’s nothing simple – there’s no simple answer other than making sure, as I said again a few moments ago, that having plenty of fresh fruit and fresh vegetables will all help to ensure that your vitamin and mineral intake is as broad as it can be, and that you are maintaining all of the right levels in those key vitamins and nutrients. And that is as good as anything as a way of preventing inflammation, preventing problems occurring.

Graham: This next question, actually, it comes from a 77-year-old, but I think actually it applies probably to all of us so I shall broaden it slightly. In this particular patient here was diagnosed some years ago and has seen a reduction in physical activity over the last two or three years after symptoms started. They were fit before and moderately active. But what can we do having got into a situation when our symptoms are affecting our ability to be fit, how do we regain fitness and are there other options like physiotherapy to get us back to a level we are comfortable with perhaps?

John: Let me start with the physiotherapy. Physiotherapy is relatively passive in that  they will look at you and they will give you some form of treatment. However, increasingly physiotherapists are also becoming very adept at providing what I would call rehabilitation, rehabilitative type work. And so if you go to a physiotherapist and ask specifically or some form of rehab programme, which may involve developing core strength, it may involve gentle exercise. That is a very good way of starting. Don’t go to a physiotherapist and ask for treatment where you may have ultrasound therapy or something that involves no exercise. So there’s local physiotherapists near us who will diagnose a patient, diagnose a problem and immediately put them on some form of strength and conditioning programme that suits their requirements. And I emphasize those three words very, very strongly.

So yes, that is one way of starting out. But again, it comes back to what I said earlier, which is – yes, you’ve gone through a decline as a result of sarcoidosis and what you have to do is almost reset your mind and you have to reset your mind in two ways. The first way is to say, right, I am now going to start exercising and I’m going to be determined to do that. But at the same time, my second mind reset, which is equally important is that I know I’m not going to be able to start out again as I was before I had my diagnosis. Because if you don’t switch your mindset and set your goals at a lower level, you’ll immediately become frustrated and immediately become disappointed. So it’s first reset is right, I’m now going to start. Second reset is I know I’m going to have to accept a lower level but if I start out at a lower level and I am gradually progressive and I do the right things, then I can work my way back up. And as our review study showed, in many cases you can work your way back up almost to as high, if not as high as you might have been before you were diagnosed. Bear in mind that sadly, Graham, all of us have a decline as a result of age anyway. So we may never rekindle our youth, but we can at least get that U-shaped curve and start to get back to the level that we were at before the diagnosis.

Graham: How important is rest?

John: Rest is so important. I was taught very early on in my sports science career that rest was one of the five principles of exercise. I won’t go through the other four, but rest is that period of time when the body adapts to the stimulus of exercise, the changes of the metabolic and physiological changes that are stimulated as a result of exercise, often continue during that rest period. It also gives the body time to recover from any minor damage that might have been done during exercise. And we all know when we exercise for the first time for a while, you get that period of muscle stiffness and soreness 24 and 48 hours after exercise. Rest gives the body a chance to recover and repair as a result of that or in response to that, so it is important. And it also mentally gives you a chance to recover and reset and start to look forward to the next exercise session that you’re going to do. So both physically and mentally, rest is critical. And again, it’s almost as if this has become the mantra throughout the morning, it’s listen to your body, have a period of rest, and it’s the person who tries to exercise seven days a week without any period of rest that very quickly gets mentally lethargic and disheartened and secondly, often breaks down with an injury and ends up not exercising for quite a significant period of time. So listen to your body, use rest to recover. And then motivate yourself to start that exercise again.

Graham: Thank you very much. Now, I think my takeaway from what you’ve said here is that exercise may not be for everyone, because of severity of the symptoms, but actually there are things we can all do to improve our fitness. So thank you very much for your time.

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