Pacing & Graded Activity
The author does not necessarily endorse the contents of this article, or of any other article she has written concerning ’treatment’ for M.E. This article is written in the light of things that are being tried and tested, and the treatment described does not necessarily either improve a person's health, depending upon other predisposing dispositions of individuals, or constitute a 'cure' for M.E. As far as is known, there is no known 'proven' treatment or cure, but much research is taking place, both into the possible causes and the most effective forms of treatment of the illness world-wide. There are at this time many claims being made as to discoveries, and the results of trials. There are also many different criteria used, and as yet, the medical profession as a whole still has a long way to go before final conclusions can be reached and agreed upon.
Furthermore, I, the author, am not medically qualified to give anyone advice as to what they should or should not do, or how to go about treatment for their illness or disability. The following material, drawn from information given to me, is offered by way of an explanation of my own understanding of part of the treatment used to help those suffering from M.E. attain a more stable and satisfying quality of life. Where a reader might think it suitable for them to try out any of the methods described as a form of self-help, I cannot take responsibility for the outcome of such attempts made, and it is always best to seek expert medical advice in the first instance. My understanding is that the programme described, whether or not deemed to be helpful, is best carried out under the supervision of a clinician.
Any psychologically based "treatment" currently on offer in this country (UK) is aimed at alleviation of symptoms only and does not constitute a cure from M.E.
Misunderstandings about Pacing
So many of us have got ourselves into the habit of doing what we can on the "better days", then, when we subsequently feel rough, doing as little as possible, resting and even sleeping as much as possible, and being generally inactive until we feel well enough again to do some "catching up". I often hear of people saying that they have an "event" coming up – say, a dinner evening - and so they are resting for several days prior to the event in order to shore up some energy. The other very common thing that is done is that when we do have a "good" or "better day", we do everything we can until we are again too exhausted to keep going. We then find ourselves feeling really unwell for the next week, or even longer. This forms a very familiar cycle and becomes our way of life.
I'm talking here about people who have made a certain amount of recovery from the original climax of their illness, but who find themselves unable to progress any further than their present state now. In this state, there tends to be a feeling of frustration and, often, hopelessness. So depression may well set in too, when we think we are never going to get beyond this boundary that seems so much out of our control.
Many people think this is what is known as Pacing - being very active while we have the energy, then doing as little as possible until we are feeling "better" again. It has often been suggested that we should "listen to our bodies" and do what it is dictating, or we will have a relapse.
A further incorrect idea about Pacing is that we should do a little less than we would normally on a "better day" and then rest for several days before doing some more. In fact, this simply means that we would end up doing less and less.
Before going into the process of correct ways of Pacing and carrying out activity, there are some other points I'd like to just explain.
Misunderstandings about Graded Activity
Unfortunately this is all too often confused with Graded Exercise Therapy (GET). Graded Exercise Therapy is generally not for people suffering from M.E. - it is too rigorous, often aerobic in nature, and would simply exhaust such a person within minutes, if not seconds! Graded Activity (GA) is quite different and is tailored to the individual needs of each patient, in accordance with where they're at in their illness. In a clinic setting, this would ideally be worked out with the patient by an occupational therapist specially trained to treat people with M.E.*
Some facts about too much rest
When we are inactive, or resting for long periods of time, we lose muscle tone and our bodies become unfit. Since we normally do go through a really bad patch in which we may be mostly bedridden in the early stages of M.E. - and then of course there are relapses afterwards, too - we have often already become unfit by the time we have had a definitive diagnosis.
Subsequent prolonged periods of rest will only exacerbate this condition, making us less and less able to tolerate exercise. We also become increasingly weak, with an increased risk of cardiac and respiratory difficulties, and when we try to do anything active, we become over-sensitive to its effects.
Neurological malfunction in the brain - Hypothesis
This hypersensitivity to muscle weakness and other bodily sensations is thought to be caused by the brain's inability to correctly interpret the signals it is receiving from the body and our environment. In turn, the brain "feeds back" wrong signals to the body, telling it that it is "overdoing it". An extreme example of this kind of misinterpretation of signals can be seen in Reflex Sensitivity Dystrophy Syndrome (RSD), in which what would normally be perceived as a pleasant sensation when lightly stroking the skin is interpreted by the brain as a very painful sensation instead.
It is a neurological disorder, and is also responsible for the "sensory overload" M.E. sufferers often experience when in noisy or busy environments, as well as cognitive malfunction, such as short term memory impairment, difficulty in finding the right word, etc.
This is an extremely simplified explanation of a very complex series of neurological and chemical activities that have become affected, partly involving the hypothalamic-pituitary adrenal axis (HPA axis), which some people may well have heard of whilst “surfing the net”, and very low levels of the hormone cortisol. The exact time of the illness at which this brain hypersensitivity sets in is not yet established and much research is currently being done in this area. So far as the person suffering from M.E. is concerned, it would seem to have been at the onset, and indeed, so it may have been, but it is not thought to be the primary cause of the illness, rather a secondary reaction to it.
It is this neurological malfunction that has to be addressed, and whilst there are trials which incorporate drug therapy being carried out in various parts of the world, with varying degrees of success and failure, there is the ongoing problem of chemical over-sensitivity in most people with M.E. For a clinician to come up with the correct drug at the correct dose, first time, for every single individual, would be well-nigh impossible and very costly, both financially and to the individuals themselves, because each person will respond in different ways, some with very bad side effects that could make them a lot worse than they were before starting such therapy.
Meanwhile, as these trials are carried out in the background in an effort to come up with a common, effective solution, it has been hypothesized that the brain's malfunctions can be reverted in other ways. The way this is done in the following data is through forming new habit patterns in a supervised fashion, so that the brain is given a chance to "sort itself out", and the body is once again able to function in a more normal fashion. There is no known cure at this time for M.E., but it is thought to be possible to get the symptoms much more under control so that we can at least live a useful and more fulfilling life once again. (Please note, this can only at present apply to those who are fit enough in the first place to take part in such a programme!)
So what is Pacing?
The habits that M.E. sufferers get into in their effort to cope with the illness usually end up as a vicious cycle of peaks and troughs. There is no end to it unless intervention is made to break this cycle.
Pacing is a programme of rest and relaxation, used in conjunction with Graded Activity - the two are taught together to form a new set of habit patterns to which it is hoped the brain and the body will adapt. The idea is to work out a baseline of rest and activity that we are able to do, to do it daily, and to be disciplined in our perseverance at it. It is intended that we start off at slightly below our mean baseline of activity, work at that level for a period of time, then very gradually increase this after we are comfortable with the first goal. We then work at the next level for a period of time until we are comfortable with that, then do another gradual increase in activity, and so on. This process takes many months, or even years, to accomplish, and is best done as part of a group, so that it is possible to encourage one another to keep going. However, I will go into more detail below about some of the ways in which various clinics attempt to improve the lives of those suffering from M.E.
* It has to be said here, however, that there are many clinics in the country which do in fact add in Graded Exercise and physiotherapy, taking the individual all too often beyond his or her tolerance level. There is much outcry about the detrimental effects of such programmes, and it is generally felt amongst those suffering from M.E. that those particular programmes should be avoided at all costs. It is, therefore, wise to find out exactly what your local clinic is offering before you attempt its regime!
Working out a baseline of Activity and Rest
Firstly, alter nothing at all, but begin by keeping a daily diary of everything you do, including all the times you rest, sleep, and so on over the period of a fortnight. It is important to fill out this diary throughout the day, so that you don't forget anything. You should include the following details:
- What time did you awake?
- What time did you get up?
- When you rested during the day and how long for.
- When (if) you slept during the day.
- When you were active AND what type of activity you carried out (this will help you in your goal setting).
- When you spent time relaxing and enjoying something.
- What time did you go to bed?
- What time do you estimate you actually fell asleep?
- How many hours’ sleep did you get during the night?
Use a graded number between 1 and 10 to remind yourself if there was a particular activity that was more strenuous than another (1 being no problem, 10 being extremely exhausting). At the end of each day, total the number of hours of activity, rest and daytime sleep separately.
Keep the diary as simple as possible - it can be quite stressful to do this, and the only detail that is really needed is for the purpose of totalling your hours of activity, rest and sleep, together with your fatigue scale rating of each activity. The diary which will then be looked at overall after 2 weeks.
Two weeks later:
This is like looking at a snapshot of your life over two weeks!
- Total up the whole number of hours of Daytime sleep, Night-time sleep, Activity and Rest for the fortnight.
- See if there are any patterns in your lifestyle that you weren't previously aware of. It might help to colour-code these. Look for the following:
- Are there times that stand out as being more difficult than others?
- Are you trying to load all your activity into one particular part of each day, and spend a lot of another part of each day resting or sleeping?
- Do you have one day when you do a lot of activity and another few days when you hardly do anything at all?
- When you know you have some event coming up, do you rest a lot beforehand for a few days to store up energy?
- Make a note of which activities are more tiring than others; include any socializing in this observation as well as duty or pleasurable ones.
- See if you can see relationships between different activities and how they grade on your fatigue scale - for example, it might be that 10 minutes on the phone to a friend was more exhausting than going for a 20-minute walk.
Now calculate your ratio of activity, rest and sleep as follows:
NOTE: If you find this too hard to do yourself, then get your carer or a friend to do it with you or even FOR you. Calculations are not easy to do when you suffer from M.E. - even if you DO use a calculator!!
- Divide each part - rest, activity, and sleep - separately by 14. This will give you your baseline for one day's rest, activity and sleep.
- Now examine your activities and add the total number of hours of each type of activity you carried out during the week, i.e. walking, washing up, gardening, talking on phone, shopping or whatever. Also, calculate an average duration for each activity, say, for example, 10 minutes on the phone (this could be 1 hour one day, none another, 5 minutes another and so on, averaging out overall at a daily time of 10 minutes.). You might do 5 minutes walking when you walked one day and 20 minutes walking on another day, and so on - total the number of minutes walking and divide it by 14 to get the average time for a day. It is also useful to calculate whether the duty activities outweigh the pleasure ones.
- You could compare the difference between your least active day, your most active day, and the average calculated above.
- Night-time sleep needs to be calculated and compared with how much sleep you used to get on average before you were ill. Your aim will be to regain that original pattern of sleep (assuming it was a satisfactory one) over time.
An example of a fortnight's charting may total up like this:
Calculated over 14 periods of 24 hours
Total No. of hours of night-time sleep:
84 ÷ 14 = 6
Total No. of hours of daytime sleep:
28 ÷ 14 = 2
Total No. of hours of Rest:
168 ÷ 14 = 12
Total No. of hours of Activity:
56 ÷ 14 = 4
Your average day's activity to start off with is, therefore, 4 hours, and this is your baseline. You should not worry if you feel you could never manage 4 hours’ activity each day.
You will notice from your own charts that you did not do 4 hours’ activity each day, but probably did 6 hours one day, none for two days, and 2 hours the next, and so on. This means that you pushed yourself too far when you did 6 hours, leaving yourself too exhausted to do much over the following days.
Did you notice what was your most stressful activity? Perhaps it was talking on the phone, whilst working on the computer was not so stressful. Or maybe going to a friend's house and socializing was more stressful than a 20-minute walk. Conversely, walking may have been more difficult and exhausting than talking on the phone, or washing up, or cooking etc. We all differ!
So you need to look at your results and consider the following:
- If your results were like the ones outlined above (unlikely) and you feel you'd be unable to sustain 4 hours of activity a day, then cut it back to, say, 3 hours a day of activity.
- If you are sleeping for 2 hours a day, then try and cut this back to 1½ hours a day.
- When you are resting, are you lying down? Try sitting up with your head propped against cushions for at least some of that time. Are you watching TV? Try not watching this for part of that time, but just let your body and mind relax - try meditation or externalisation. This is needed in order to give your mind a rest as well as your body.
- Is there a particular activity that you find more stressful than others? Then try to cut back on the more stressful one and do a bit more of the less stressful one, and do it on a daily basis.
- Aim, too, at always getting up at the same time each day, so if you have been getting up at 7 some days and 10 on others, try aiming at getting up at 9am each day. Make sure, too, that you have a wind-down period each evening before going to bed.
- Build in relaxation/rest and activity consistently throughout your day, i.e. spread the load of activity so you do some in the morning and some in the afternoon. Have periods of rest both in the morning and in the afternoon, and so on. A good suggested guide is to have FOUR rest periods during the day, a wind-up time in the morning and a wind-down period before going to bed. It is also suggested that everything else is worked strictly around these chosen rest periods.
- Try to arrange your higher fatigue-rating activities evenly throughout the day too, so that instead of doing all of it in one go, you do it in several shorter goes, some in the morning, some in the afternoon - or even spread the load over several days.
The idea now is to aim for consistency throughout your future days, so the information you have gathered will help you determine which things to cut down on, which to increase, and which may stay the same, thus aiding you in your goal-setting.
A greatly simplified hypothetical example of a mean average baseline could be that you do 15 minutes walking a day, 30 minutes reading a day and perhaps watch TV for a couple of hours each day. (You may not be able to walk, or even do the other suggested activities at this stage, so don't let this put you off!)
It is suggested that you take these figures back slightly to make them manageable at a consistent level each day, so you could say the ideal baselines would be:
- 4 x half-hour rests per day
- Half-hour wind-up and wind-down at beginning and end of each day
- Walking = 10 minutes
- Reading = 20 minutes
- Television = 75 minutes.
When you have worked out your baseline of activity, the first thing it is suggested you do then is to set yourselves some easily attainable goals. These are set in order to enable you to gradually increase your tolerance to activity, experience a reduction in symptoms, and gradually increase activities and behaviours that were previously avoided. A rapid return to fitness experienced before we became ill is not possible and must not be attempted! We can decide the things we would ultimately like to end up doing, but we must put that ultimate goal far ahead of us for the time being.
Your immediate goals might be very small indeed, depending on what you are already able to do. They will be aimed at getting you back into some form of useful activity, such as the ability to wash up once a day, if that's something you have hitherto found impossible. It may be to do a 10-minute gardening stint each day, or go for a 15-minute walk three times a day; it may be to just sit and read a book for 10 minutes a day, or to go shopping in the supermarket for 45 minutes once a week. These are extremes, but it is intended that they are all attainable if we approach our goal-setting correctly, work out our baseline of activity and then stick to a daily discipline of rest and activity, no matter how we are feeling, but not ever beyond our limits. At the same time, it is suggested that it is important to treat the good days in the same way as the bad days - in other words, to retain a constant level of rest and activity all of the time.
You may find you feel slightly more tired initially, but you should not let this put you off - it is surmised that this is only temporary and does not mean the treatment is not working for you. Be patient, be disciplined, and do not increase your activity ratio too soon. A fairly safe time to keep going at each level is 2-3 weeks, depending on where you're at in your illness. It is suggested that increases in goal setting should not be made at more than a rate of 15-20% at a time, and some goals will need longer periods of time to attain than others, depending on how taxing they are on the mind and the body. It is interesting to note that, apparently, a lot of people find they need to do less activity than they have been trying to do as they begin on this programme. It cannot be emphasized enough that Graded Activity does not mean pushing ourselves beyond our limits. You may need to work on attaining only one or two of your goals at a time.
Allowances do have to be made, of course, for such events as “going down with a cold” or having lots of visitors all of a sudden - things that will make us extra tired very quickly.
Now, imagine someone's baseline for walking is 10 minutes per day and their goal is to manage to do their supermarket shopping which takes 25 minutes - something they have had to rely on someone else to do for a very long time now. (You may not be at this stage at all! - do not worry, this is only an example of the way this programme may work for you.) Here's the plan:
Day 1, to walk for 9 minutes per day. Review date = Day 7
Day 8, to walk for 12 minutes per day. Review date = Day 14
Day 15, to walk for 15 minutes per day. Review date = Day 21
Day 22, to walk for 18 minutes per day. Review date = Day 28
Day 29, to walk for 22 minutes per day. Review date = Day 35
Day 36, to walk for 25 minutes per day. Review date = Day 42.
NOTE: You may find you will need to review every two or even three weeks. The idea is that you'll get there - provided there is no other medical condition that is preventing it!
There are NO direct quotations.
- Personal conversation with my own consultant who heads up the Wareham ME/CFS Clinic.
- Literature emailed to me by my consultant - which bears no name or copyright - it has simply been used as part of the local M.E. programme for rehabilitation, and is constantly revised.
- Information drawn from literature from Harold Wood Hospital in Romford, Essex, some of which bears no name or copyright, and some of which is drawn from literature copyrighted in 1997 by CFS Team, Havering Hospitals NHS Trust 1997, first produced by Diane Cox 1994. (Mainly the section on goal-setting.)
- Information concerning the neurological malfunction of the brain is drawn from (but not directly quoted from):
a. Betrayal by the Brain by Dr J Goldstein, summarized by Dr J A Sherkey, details of which are available on the ME/CFS Australia (SA) Inc website.
b. A video of a lecture given in Dorset in 2002 by Dr Abhijit Chaudhuri, Clinical Senior Lecturer in Neurology, University of Glasgow, Institute of Neurological Sciences.
Pacing & Graded Activity was published in 2002. Please direct all enquiries to Louise Sargent. You have permission to print this article for your personal use; please Click Here to download a copy (Microsoft Word file).