Guest Blog: That Thing Called Pacing, by Ingebjørg Midsem Dahl

Ingebjørg Midsem Dahl was born in 1979 in Oslo, Norway, where she still lives. She came down with ME acutely in 1983. Ingebjørg has done written information work for major ME-organizations in Europe since her teens, mainly in Norway, Denmark and Great Britain. She is particularly focused on spreading knowledge about coping and management, as these can make life a bit better here and now and enable us to live rich and fulfilling lives, despite limitations.

The techniques outlined in the article below have enabled Ingebjørg to write a book about coping with ME called Classic Pacing For A Better Life With ME, and they have also been very important in initiating and maintaining years of gradual improvement in her health. Thanks to these techniques she has been able to pursue her other interests, languages, literature, writing, history, early music, natural sciences and different types of crafts.

The article below is reprinted with Ingebjørg’s permission.

That Thing Called Pacing


Part 1:
Why bother

You’ve probably heard about pacing, or maybe you haven’t. If you have, you may know that it is a management technique used in illnesses that give low energy levels and pain. Pacing consists of listening to your body, and seeing symptoms as signs, usually of overactivity. You use information from your body to reorganise your activities to get as low a symptom level as possible. This usually means splitting activities into smaller bits and taking frequent rest breaks. It also means finding less strenuous ways of performing activities. When less energy is spent on some activities, you’ll have more energy left over to have fun. Although that is an obvious boon, you’re probably not jumping up and down right now thinking “Hooray, pacing is what I’ve always dreamed of”. So why bother? Is there any point in even trying?

Why Bother About Pacing?
Let’s have a brief look at some of the relevant research. Several studies have shown that people with ME produce less energy in their cells than healthy people. Dr Sarah Myhill and colleagues looked at five different aspects of cell metabolism, and found that it varied from person to person how compromised each part of the metabolism was. However, the total amount of energy production problems for each person correlated almost perfectly with the person’s level on a disability scale. In other words, the worse the energy production problems were, the more ill the people were and the less they could do. This shows that the feeling of lack of energy in ME isn’t just a feeling; it’s a sign that the energy production is actually lower than in healthy people.

Several groups of researchers have looked at the effect of exercise testing in ME, particularly maximal exercise testing done twice 24 hours apart. The oxygen uptake dropped significantly on the second test in people with ME, whereas healthy people either did just as well as the day before or even a bit better. The changes in the bodies of ME patients are so characteristic that these tests have been considered a possible diagnostic test. However, people with ME don’t just perform worse on the second day of the test; their gene expression also changes on the second day. Gene expression is about which genes are turned on and which genes are turned off. When people with ME are overexerted, genes that lower the metabolism and change the immune system are activated. This does not happen in healthy people. Basically, these tests show that overexertion activates the disease process in ME, and it also actively worsens the disease process and the functional ability of the patients. In other words, doing too much makes you more ill. That’s why it’s so important to learn pacing, as the whole point of pacing is to stay within one’s energy limits, thereby avoiding overexertion.  You can read more about this in the next article in this series.

Part 2: Warning Signs and Listening to Your Body

If you have ME, you have undoubtedly discovered that the symptoms vary in intensity and in number. However, have you ever noticed how your symptoms are affected by activity? Let’s use writing as an example. When you first start writing, you may feel relatively okay. Soon, however, you will notice that your fingers and hand are getting tired. This will gradually worsen into muscle fatigue and aches. By then you may also start experiencing cognitive problems such as concentration problems, difficulty remembering what you wanted to write, and perhaps writing the letters in the wrong order. As the exhaustion in your arm worsens, you will typically also notice symptoms from the rest of your body. This may start as fatigue in your legs and back, and will gradually worsen to a wide range of symptoms. You’ll finally move on to feeling really ill. The exact number and order of symptoms will vary from person to person. How long it takes to reach this point will vary depending on the severity of your illness and what you’ve been doing previously. If you are well rested at the outset, you will typically be able to go on for longer than if you were exhausted by the time you started. The descriptions I’ve given are just examples to show the principle. When you combine the research mentioned in the previous article in this series with the description of symptom increase I’ve just given, it’s easy to see that symptoms are warning signs. The increase in small, often peripheral symptoms early in the activity are warning signs that you are about to reach your limit. The large symptom flare-up towards the end signifies that you’ve already overexerted yourself and have provoked an increase in illness activity in your body. You may not be accustomed to viewing your symptoms as warning signs. Learning to notice symptom increases is a very important skill in ME, and it’s the first step towards pacing. Try the following task to train this ability.

Task:

Over the next few days, notice symptom increases. These could be small ones, such as your legs tiring when walking to the car, or your jaw aching when chewing. They could also be large ones. For instance, a round of grocery shopping might cause a symptom flare-up bad enough to leave you wiped out on the sofa for several hours. It could even force you to spend three days in bed. You may want to write down some of your observations, or record them on your mobile. However, if you don’t have the energy for that, it doesn’t matter. The important thing is noticing what is going on, not writing it down.

Listening to Your Body
Listening to your body is a central part of pacing. It consists of two things. The first part of listening to one’s body is to notice the warning signs. The second part is to act on them and actually stay within one’s energy limits. Regarding the first part, warning signs of overactivity are the most central to pacing. It also helps to notice any other sign your body may be sending out, such as thirst or hunger. Strictly speaking these have nothing to do with pacing, but they are an important part of general self-care. Getting suitable amounts of food and drink, and covering other basic needs, will make it a lot easier to interpret your body’s warning signs, because the signals relevant to pacing will be less mixed with other things. From a pacing point of view, the most important signs are those caused by overexertion. However, noticing these is only the first step. The second step is to act on them.

In pacing terms, what the body usually asks for is either rest or variation. Slightly larger symptom increases, where the general lack of energy increases, is a sign that you need total rest. Lie down and rest as soon as this happens and preferably rest until you feel slightly better than you did before you started the activity. Generally pacing is more effective if you listen to the small signs. Basically, if you stop before you feel awful, you’ll feel less awful. A high background level of symptoms and/or great instability are usually signs that more rest is needed. If your illness is at the severe end of the spectrum you will likely find that even minimal activity brings on significant warning signs. You will typically need total rest during large parts of the day in order to keep the symptoms under control. At this stage, pacing can be very frustrating, as you have so little energy to budget with

When you are less ill and the gradual increase in symptom level happens more slowly, pacing will be easier. You will be able to stop when the warning signs are mild. The first very slight signs, which are usually peripheral, show that this particular body part needs to rest, but not necessarily the entire body. So if you’re writing and your fingers start to get a little tired, you can switch to another activity which doesn’t require using your fingers. That could be listening to an audio book or walking around the room watering some plants with the other hand, or some other activity which doesn’t require using the same muscles you’re using when writing. After a while you might be able to switch to a third activity and then perhaps go back to writing again. For people with very mild ME switching between different activities, such as physical, mental and social activities, and activities that use different body parts, may be all the pacing they need. However, most people with ME are so ill that they need some periods of total rest, when the body really gets to regenerate. The next article in this series will take a closer look at resting.      

Task:
When you notice signals from your body, try to determine what your body is asking for; variation, rest, or perhaps something else. If you have a high symptom level, you may find that your body is asking for more rest than you would like.

Part 3: Rest

Rest is an essential part of ME-management. Everyone knows the feeling of crashing on the sofa and feeling the symptoms slowly abate. In my book “Classic Pacing for a Better Life with ME” I call this “repairing rest”, because this type of rest repairs overexertion. You can feel it working fairly quickly within minutes, hours or days. Repairing rest is an invaluable tool for getting over a symptom flare-up due to overexertion as fast as is possible. It usually works faster if you get total rest and deep relaxation, instead of just watching TV. In fact, if you’re quite severely ill watching TV and other light activities will drain you even further. Without repairing rest, there’s a real risk of a long-term relapse. However, repairing rest only gets us back to where we were before the overexertion. In order to get any further, we need healing rest.

The goal of pacing is to get the body into balance. Alternating activity and rest and alternating different types of activities are good ways of doing this. However, if your activity provokes a significant amount of symptoms, you need to rest the symptoms away. You are, in fact, going in and out of balance. The activity brings the body out of balance, and the rest will then bring it back into balance. It’s like using your checking line-of-credit and then paying it down. What we’re looking for is an upward spiral, where the body’s energy reserves gradually grow, rather like a savings account.

The quickest way to get a savings account to grow, apart from winning the lottery, is to plan a budget where you spend a bit less than you earn and then leave the surplus money on the account, so that you start getting interest. In terms of pacing, this would mean stopping each activity or group of activities before your symptom levels rise, and then having a rest, even if it feels like you don’t need it. In my book I call this type of rest “healing rest”. Although rest helps the body regenerate in any case, there’s a distinct difference between using rest to pay down debt and using rest to top up your savings account. Paying down debt, which equals repairing rest, brings your account in to balance but doesn’t get you any further. Saving up money increases your fortune, and in time you will get interest on your savings, and interest on the interest. This equals healing rest.

Does the theory of repairing rest and healing rest mean that pacing with enough healing rest will always be sufficient to kick-start gradual improvement? No, unfortunately not. There are many factors that affect the health of people with ME, including infections, food intolerances, stress and immune abnormalities. If there are enough negative factors pulling in the other direction, pacing will not itself be enough to start improvement. A good example is a friend of mine with severe ME who has a very aggressive human herpes virus 6 infection, which her immune system is incapable of keeping down. When her infection is not treated, my friend experiences progressive worsening of her health. Once she receives both antiviral and immune modulating drugs, her condition becomes stable, and then pacing has produced various positive effects. Pacing in itself is not enough to stabilize her condition. However, many people find that the opposite is also true – that treatments, on their own, do not work sufficiently without pacing. I am aware of many people with ME who have experienced temporary improvement from a treatment, but who increased their activity level too quickly and ended up crashing badly, often losing all the improvement they originally got. Those who combine pacing with other treatments appear to have a considerably greater chance of holding on to their improvement, since several approaches at once also appear to give greater effects than using only one. I would, however, strongly suggest that you learn one management technique at a time, and also try treatments one at a time. Trying to do everything at once can be overwhelming. Start with what seems most acutely needed and add new approaches when you feel ready.

Even when pacing gives improvement, it varies how quickly this happens. This is partly because it varies how much healing rest is possible for people to get in their particular life circumstances. Greater amounts of healing rest tend to produce quicker effects. However, there are also significant individual differences in the stubbornness of the illness. People with a very stubborn variety of ME find that it takes longer to get effects from pacing no matter how good they are at it. The good news is that the short-term effects of pacing, namely lower symptom level and fewer bad days, are usually so good that the method is worth using whether you experience long-term improvement or not.

Task

Organize your activities and rest breaks so that you get some healing rest every day. One method of doing this is to plan regular rest breaks and take them whether you feel you need them or not. If you’re not accustomed to resting, you can try resting for five minutes per hour and then increase gradually as needed. Listening to relaxation sessions can make resting easier and deeper and therefore more effective. Remember that healing rest is surplus rest. Whenever you end up being active to the point of symptom flare-ups, try to rest not only until the symptoms go down, but a bit longer. 

Part 4: Some implications of the theory of repairing rest and healing rest.

In the previous article, I introduced the concepts of repairing rest and healing rest. According to this theory, there are two types of rest in ME. Repairing rest is rest which restores us after overactivity, while healing rest is extra rest that charges our batteries further. Repairing rest is like paying down debt, healing rest is like saving up money. People with ME who have tried to incorporate this theory into their pacing strategy, generally find that healing rest improves chances of improvement, and that greater amounts of healing rest are more effective than smaller amounts. So, if you feel that you’ve reached the glass ceiling and can’t get any further, lowering your activity level to get more healing rest, will typically kick-start the improvement again. However, the effect of healing rest varies considerably from person to person. Some people experience much greater effects than others. Factors such as immunological problems, digestive problems and infections can influence this.

The theory of repairing rest and healing rest adds nuances to pacing, which explain some of the variations in patient outcomes. At first glance these variations may seem confusing. For instance, why do some people experience improvement in their health despite being on a rollercoaster of overactivity and crashing, whereas others experience deterioration even though they pace themselves? If someone pushes himself and pays the price, and then rests a bit extra and pushes themselves again, they may in fact get regular healing rest. This could lead to a slow upward spiral. With this approach, illness activity in the body will be high and risk of relapse will be similarly high, because you don’t have any safety margin. If an unexpected event turns up, it could easily tilt the balance. People who experience unstable improvement tend to have many bad days and bad periods, but may still experience improvement over time and be able to sustain this. It’s also possible to use various pacing techniques, such as splitting activities in small bits, and taking regular rest periods, and keeping activity stable from day to day, but still spend slightly more energy than you have. This could be described as paced overactivity, and the result will generally be a slow downhill spiral. This pattern is particularly challenging because it can be very difficult to notice very slow deterioration. You’ll have the time to get used to the deterioration and adapt to it along the way, which makes it harder to notice. In fact, people around you may notice it before you do. By the time you notice it, the deterioration may be so well established that it’s hard to stop. I’ve been in this situation myself. I did eventually manage to stop the deterioration and turn the illness around, but it was very difficult. The trick was to lower the activity level enough to get healing rest every day, thereby gradually building up the energy reserves instead of worsening the overdraft.

The theory of repairing rest and healing rest also sheds light on why some people experience improvement from graded programmes. In these programmes, activity is usually lowered to a point which does not aggravate symptoms, but how this is interpreted varies considerably. Often, patients are advised not to lower activity very far. However, if a patient takes the advice literally and actually stops before symptoms increase, they would likely get a significant amount of healing rest. If a sufficient period of stabilisation is taken before the patient is advised to gradually increase the activity, the healing rest could kick-start gradual improvement. This would enable the patient to slowly increase activity. In this case, it would look as if the programme is working according to plan. In reality the improvement is caused by the healing rest, not by the gradual increase in activity thought to be responsible for the improvement by those who designed the programme. If, however, the patient is advised not to lower activity very far, they may not get any healing rest, in which case attempts to increase activity would likely lead to severe relapse. The theory of repairing rest and healing rest can therefore explain the variety of outcomes from these programmes. I am not saying this to defend the graded activity, but to defend the patients who improve from these programmes. They are often thought not to be  real ME patients. Given the wide diagnostic criteria often used by researchers who use cognitive behavioural therapy (CBT) and graded exercise therapy (GET) programmes, this is a real concern. A number of patients in these studies may well be misdiagnosed with ME, but that may not be the whole answer. Sheer luck could turn the programme from a harmful one to a beneficial one without anyone realising why.

The theory behind graded exercise and CBT with graded activity is that increases enable further increases, either because deconditioning is lessened or because the patient becomes less afraid of activity. In my experience, this theory is not only wrong but also potentially harmful. What patients experience, is that staying within their energy limits enables their energy limits to expand. Once they are expanding, it’s possible to gradually do more, provided you stay within your limits during the process. If you try to push the limits outwards, they will either stand still or contract. Pacing takes into account the need to stay within ones limits, even during an increase process. It recognises that it is staying within the limits that enable the body to regenerate. If this is correct, programmes focusing on increases or exercise divert the attention from what really helps. When the theory behind the programme is wrong, it’s impossible to ensure that the programme is tailored to the patient and ensures success every time. In my opinion, pacing should therefore form the basis for ME management, not GET, CBT with graded activity or combinations of these and pacing. When the theory of repairing rest and healing rest is incorporated into pacing, it enables us to optimise the pacing strategies, thereby maximizing chances of improvement.

Task

Think through the course of your illness and consider how the theory of repairing rest and healing rest can deepen your understanding of the ups and downs. Then consider how you can use this knowledge to optimise your pacing strategy. It can help to look at typical you-scenarios. For instance, if you often begin to get better, but then crash again, the theory of repairing rest and healing rest might suggest that you increase activity so fast that you “eat up” all the healing rest, and then start “stealing from” your energy account. In this case, it could help to increase more slowly to maintain healing rest. This could prevent a relapse.

Part 5: Diaries and planning.

Those of you who have read a bit about pacing in advance may wonder why I haven’t yet mentioned anything about planning and activity diaries in the previous articles in this series. These can certainly be valuable tools, but they’re only tools. The main principle and central point  of pacing is to stay within one’s energy limits. There are many ways of doing this. Interestingly, following a daily routine does not automatically guarantee pacing. You’ll only get pacing if the routine is constructed so that it actually helps you stay within your energy limits. If the routine is set too high or too low you may end up with enforced over- or underactivity. The problem of enforced overactivity is probably greater than underactivity, particularly since many guides to this type of pacing stress the importance of not lowering the activity too far. Using an activity diary can help you find out which level of activity is suitable for you, but writing one could lead to overactivity for someone with severe ME. Plus, writing a diary in itself does not automatically lead to stopping in time.

Simple activity diary

An activity diary can be written down or dictated for instance to your mobile. In a simple activity diary, you note the main activities of your day, such as having your hair washed in bed or going shopping, depending on how ill you are. You also rate your symptom intensity on a scale from zero to ten. This type of diary will typically show that if you do more than a certain amount of activity every day, your symptom level will rise and you will be forced to do less. The point of the diary is to help you figure out what you can do every day without causing symptom increase.

Detailed activity diary

In order to find the optimal distribution of activity and rest throughout the day, it is useful to write a detailed activity diary, provided you have the strength for it. In this diary you write every activity, large or small, and the rest breaks. You also rate your symptom level before and after each activity. The point here is to find out whether an activity or group of activities is too long or too strenuous. You can then rearrange activities in a pattern which does not cause symptom flare-ups. If you have already kept a simple diary for a while and have found a good distribution of your larger activities, you may only need to keep a detailed diary for a few days to work out the distribution. Pacing tends to slip a bit after a while. The simple diary can be used as a monitoring tool to help you prevent this. However, in order for this to work you need to make sure that your particular diary shows the activities that tend to slip. For instance, if you start watching TV instead of resting, your diary needs to show the amount of total rest to enable you to discover this.

Planning

Then there’s the planning aspect. A simple diary can be used to help you plan a weekly routine. If you cannot go shopping and visit a friend on the same day, you can plan these on different days. Adding survival activities like bill paying to your routine, in small manageable chunks, will make organizing a lot easier. If you follow your routine, the most crucial things will get done, and if you have to drop something you will know what it was you dropped. You can then prioritise it next week. This type of loose weekly routine suits just about everybody and makes life with cognitive problems much easier. A detailed activity diary can be useful for structuring each day. This is particularly useful if you are so ill that lapses in pacing will make you too ill to cook or eat. In your routine you will distribute your rest periods and activities so that you are able to eat when you are hungry. How detailed the routine needs to be will vary depending on how ill you are, what your life situation is like, and your personality. A completely rigid routine can be hard to follow, while a flexible one can make life a lot easier. You will typically need to experiment a lot to find the optimal distribution of activities and rest. The important thing when planning a daily routine is to scale down the routine enough for you to have some extra energy to spend if something out of the ordinary turns up. Unexpected events do happen. For more detailed instructions and how to construct a routine, you can see some of my other articles and my book, “Classic Pacing for a Better Life with ME”. It offers a full range of tools for pacing, and also advice on pacing in particular situations, such as severe ME, education and social life.

The tools described in this article can make pacing easier, but they do not automatically lead to pacing. It is only when the tools are used to stay within your energy limits that they result in pacing.

Task

Consider whether the tools in this article are suitable for you. If they are, try them out.

Part 6: Underactivity and conclusion.

A relevant question in conjunction with pacing is whether it is possible to do too little. Theoretically it is possible. However, most people have so severe limitations to their functional ability, that normal every day obligations become too much. In reality they simply cannot do too little. For most people the battle lies in doing little enough, and managing to do this for long enough to stabilise the illness. If and when the illness begins to improve the usual challenge is to increase slowly enough to avoid overactivity and crashing straight back down. The problem is not to work up the courage to take tiny steps forward. A minority of people with ME have a tendency for over cautiousness, which is natural if you have experienced many relapses because of overactivity. However, the body sends out signals both when it wants more activity and less activity. Experienced pacers say that it’s easy to recognize when the body wants more activity and adjust the activity level accordingly. The greatest risk of prolonged underactivity is probably present in people who have severe depression or anxiety on top of the ME. This is because lack of emotional energy may be mistaken for lack of physical, mental and social energy. It is however possible to tell these forms of lack of energy apart. Simply being aware that there’s something called lack of emotional energy can make it easier to discern them. Being aware of which behaviour patterns you tend to move into, is also an important part of choosing a sensible management approach to your ME. This is true no matter which patterns you tend to follow, whether it be overactivity, underactivity, dramatic see-sawing or other patterns. It should be noted that anxiety and depression do not automatically cause underactivity in people with ME. Whether you have anxiety or depression or not, it’s important to find management strategies which are tailored to your actual needs, not just a theory about what might be going on.   

Conclusion

Among people with ME it’s been well known for decades that pacing can be of benefit. Newer research shows that pacing may in fact be a necessary and essential part of keeping the illness process as low as possible. Pacing is about listening to one’s body and using the symptoms as warning signs of overactivity. You then break activities up into small bits which cause as little symptom increase as possible and take regular rest breaks to recharge the batteries throughout the day. Staying within one’s energy limits, even on good days, usually leads to the disease process calming down. With time, many people find that they can gradually do more without provoking symptoms. The process of increasing activity involves remaining within one’s limits, not trying to push the limits out. This makes pacing distinctly different from graded approaches such as graded exercise and cognitive behavioural therapy with graded activity. For most people, pacing increases quality of life, and can enable people to lead a fulfilling life despite being ill.

Want to learn more? Check out my website www.pacinginfo.eu, where you can find articles and read the first chapter of my book “Classic Pacing for a Better Life with ME”. The book’s Facebook page, www.facebook.com/pacinginfo, contains videos with short talks about pacing, suitable for those who have difficulty reading. You do not need a Facebook-profile to view this page.

© Ingebjørg Midsem Dahl 2019

ME groups are welcome to reprint this article in their newsletter or link to it provided that nothing is changed. If you choose to translate it, please email me: post@pacinginfo.eu 

References:

Betsy A Keller, John Luke Pyor and Ludovic Giloteaux. (2014) “Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO2peak indicates functional impairment” Journal of Translational Medicine 12:104

Bouquet J, Li T, Gardy JL, Kang X, Stevens S, Stevens J, et al. (2019) “Whole blood human transcriptome and virome analysis of ME/CFS patients experiencing post-exertional malaise following cardiopulmonary exercise testing.” PLoS ONE 14(3):e0212193

Christopher R. Snell, J. Mark Vanness, David R. Strayer. (2005) “Exercise Capacity and Immune Function in Male and Female Patients with Chronic Fatigue Syndrome (CFS)” In Vivo 19:237-390

Katarina Lien, Bjørn Johansen, Marit B. Veierød, Annicke S. Haslestad, Siv K. Bøhn, Morten N. Melsom, et al. “Abnormal blood lactate accumulation during repeated exercise testing in myalgic encephalomyelitis/chronic fatigue syndrome” (2019) Physol Rep, 7(11):e14138

J. Mark Vanness, Christopher R. Snell, Dean M. Fredrickson, David R. Strayer & Staci R. Stevens (2001) “Assessment of Functional Impairment by Cardiopulmonary Exercise Testing in Patients with Chronic Fatigue Syndrome”, Journal of Chronic Fatigue Syndrome, 8:3-4, 103-109

Sarah Myhill, Norman E Booth and John McLaren-Howard. (2009) “Chronic fatigue syndrome and mitochondrial dysfunction” International Journal of Clinical and Experimental Medicine
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Sarah Myhill, Norman E Booth and John McLaren-Howard. (2012) “Mitochondrial dysfunction and the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)” International Journal of Clinical and Experimental Medicine 5(3):208-220

Sarah Myhill, Norman E Booth and John McLaren-Howard. (2013) “Targeting mitochondrial dysfunction in the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – a clinical audit” International Journal of Clinical and Experimental Medicine 6(1):1-15

Snell CR, Stevens SR, Davenport TE, Van Ness JM. (2013) “Discriminative validity of metabolic and workload measurements for identifying people with chronic fatigue syndrome” Physical Therapy 93:1484-1492

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