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The Art of Pacing in Chronic Fatigue Syndrome CFS ME

What is pacing in Chronic Fatigue Syndrome and ME?

Pacing, like many aspects of Chronic Fatigue Syndrome CFS is not clearly defined and as a result, there is variation in the meaning and use of the term. In addition, it is actually a controversial therapy for chronic fatigue patients because the medical community and the NICE guidelines are actively NOT in support of patients following a “pacing strategy” as a therapeutic intervention, whereas chronic fatigue and ME patients themselves are vastly in favour of this therapy. In a 2001 survey produced by the well-known charity ‘Action for ME’, 90% of patients said that pacing was helpful.

Despite this, when wading through the NICE guidelines and Working Group reports on Chronic Fatigue Syndrome and ME, you will find that NICE supports “activity management” as opposed to “pacing.” The only other main therapies officially accepted and recommended for chronic fatigue and ME patients include, drug therapy using anti-depressants (which many patients are familiar with) and Graded Exercise Therapy (GET). GET is very controversial as it involves prescriptions of exercise to increase patient activity levels over time. In the Action for ME survey, 50% of patients said GET made them feel WORSE, not better, and caused them to crash.

So what is the difference between pacing and activity management? And which SHOULD patients be following? And what about GET?

“Activity Management” versus “Pacing”

These two terms share many aspects:

They refer to a strategy for management of physical activity levels – the focus is on the external behaviour of the patient with specific reference to the amount of daily activity they carry out
The aim is to manage the balance between activity and rest during the recovery from chronic fatigue syndrome and ME
The aim of managing physical activity is to avoid falling victim to the problem of “boom and bust” energy cycles
They aim to maximize cognitive and physical activity, whilst avoiding setbacks/relapses due to overexertion

Shared examples of aspects of both therapies include:

Rationing daily activities by spreading activities over the week
Breaking tasks down into small manageable parts
Interspersing activity with rest

The Key Difference between Activity Management and Pacing

The main distinction appears to be that “activity management” is a goal orientated activity, with the intention of keeping activity level diaries to increase activity over time. In this sense it follows the same principles as GET.

This difference seems to be based on the fact that NICE are concerned that “pacing” will lead patients to simply limiting their activity for good, and that there is no intention to increase activity levels over time. This in turn risks physical de-conditioning and would lead to further complications and deterioration.

However, as always with NICE guidelines, there is an undertone that increasing activities are always emphasized and recommended. This is unsurprising seeing as the official view of chronic fatigue syndrome and ME has been that there is nothing physically wrong with patients – it has been predominantly viewed as a psychiatric disorder so you CAN do more, “it’s just in your head.”

At the Clinic we always take into account all views and opinions, meaning that together, with our own experience, we now have a clear set of integrated guidelines for patients in this area. At The Optimum Health Clinic we agree AND disagree with the NICE guidelines. We also look at what STAGE of illness/recovery you are at, what TYPE of fatigue you may be experiencing and learning to understand what your body is communicating to you.

Sometimes when a patient is ill, doing “too much” will cause physiological damage to your body and prevent or delay your recovery, because there ARE organic, biochemical or physiological imbalances in chronic fatigue syndrome (CFS) and ME. Taking this into account, we completely disagree with “activity management” and GET – these therapies can make some people even more unwell, which is backed up by the patient survey as quoted above.

On the other hand, there IS a point that patients reach in their recovery where they DO need to have the confidence to do more and to start increasing activity levels, as well as trusting that their body will cope. It is also true that doing too little WILL lead to physical de-conditioning over time.

Interestingly at the Clinic, we often have to make clinical judgements as to whether we are actually going to recommend a patient to push through and do more, or to say, “hold off, slow down!” Ideally however, it is important for patients to learn the art of pacing for themselves – so these are our official guidelines on “pacing” for patients.

The Optimum Health Clinic Recommendations for Pacing

Unfortunately we cannot provide you with a simple prescription for your daily activity levels like we would for example, the dosage on a supplement – the whole point of pacing is about learning to listen to what your OWN body is communicating to you, and adjusting your schedule accordingly. Your daily activity levels are not an externally designed programme, nor something you can necessarily rationally design in the mind. This is not in fact about mental activity, it is learning to feel your body and understand what it is communicating to you. This is why we call it the “art” of pacing – it is not a science.

For many patients, this is a critical skill or ability that they NEED to learn – often the lack of listening to or trusting the body, in part may have led to the development of the illness in the first place. What we CAN do however is give you some clear principles to help you to understand the signals that your body is sending you.

Firstly, some general understandings about the stages of illness and types of fatigue will help you to pace properly.

Understanding that there are STAGES to recovery – you need to know what stage you are at in order to pace well

Stage of Illness	Symptoms	Biochemical Imbalances	Psychological Characteristics	Implications for Pacing
Crash	Substantial physical immobilisation – very little capacity to do anything.	Often there will be a crash in the nervous system, mitochondrial system, adrenals, gastro-intestinal secretions and possibly detox system at this stage. Makes the body vulnerable to viruses in perhaps 60-70% of cases.	Exhaustion, often overwhelm – too tired to fight illness, may be in shock .	At this stage pacing is not of any real concern as generally rest and bed rest is top priority.
Wired But Tired/ “Misery” Stage	Many ME/CFS symptoms are experienced – pain, physical fatigue, poor sleep, head symptoms, digestive symptoms, flu symptoms, etc.	Energy production is happening but can damage the body because the body is stuck in a state of stress – excess free radical damage is occurring (producing symptoms). If healing, rest and nutrients are not supplied; body goes into adaption phase – trading function for existence/self protection. All of the systems from the crash stage may be involved and at differing stages of recovery. Immune system may have become chronically out of balance allowing chronic low-grade infections.	Patients have often not fully accepted their illness, they may be resisting, denying and feel very angry and frustrated with the illness. They can also lack understanding about what may be required for recovery.	Patients are most at risk of not pacing properly – but it is a time where learning how to pace becomes critical in order not to return back to chronic crash stages by “over-doing it”.
Adaption	Patients often report that they do not think they have CFS/ME – however if they go beyond set physical limitations and “over do it” they can experience a return of ALL symptoms.	Low levels of activity cause damage to the body (oxidative stress), so the body responds by reducing mitochondrial function. As such, when the energy engines are on, they function abnormally, damaging the body so that the body switches off the engines in order to protect itself. Function is traded for existence/self-protection.	Patients have often come to terms with their illness. They have accepted the limitations of illness – they no longer are fighting, resisting, denying or angry about it.	Limited activity is an accepted way of life. Patients may be most at risk of being stuck “thinking like a sick person” and under-doing activity.
Reintegration	Patients are gradually gaining more energy and have less symptoms – however dips do happen, they are just less frequent, less deep and last for a shorter period of time (see graph below).	Recovery involves “upsetting the apple cart” every now and then. We do not want the body to have adapted to an under-functioning self-protected state – slowly the mitochondrial and other bodily systems are getting the nutrients and healing energy they need in order to recover to full function.	Patients have accepted their illness, but have a positive expectation of good improvement or full recovery. They have the balance between accepting where they are while trusting that improvement is naturally possible.	Patients have learnt to understand their body, the type of fatigue they have and what stage of illness they are at. They can adapt their activity accordingly, taking time to rest and “bouncing the boundaries” when they know it is time to expand recovery.

Reintegration Phase – How Chronic Fatigue Syndrome patients recover: the long-term trend is upwards, with natural dips along the way

The diagram on the next page demonstrates how patients generally recover from a chronic illness like chronic fatigue syndrome or ME. Part of the process of recovery is to have “blips”, which are not to be feared or blown out of proportion. Blips DO happen on the road to recovery, and over time they happen less frequently, are less deep and last for a shorter period of time – but they DO happen.

Graph of the Recovery Process from CFS/ME

One other important point to emphasize about the STAGES of recovery is that stages are NOT a linear process, i.e. a crash is not necessarily followed in order by misery, adaption and reintegration. Patients can for example, move into the reintegration phase after any other stage, or drop back into the crash stage after any other stage.

Understanding that there are different TYPES of fatigue – understanding which part of the body is stressed and whether pacing is relevant treatment

Type of Fatigue	Symptoms	Biochemical Treatment	Psychology and Pacing
Physical	This type of fatigue specifically relates to post-exertional fatigue – i.e muscle tiredness and weakness after physical activity (and can include a return of all ME symptoms).	This relates most directly to a poor mitochondrial function. A nutritional practitioner can help treat mitochondrial function.	It is critical to understand about pacing at this stage – see the section below on Bouncing the Boundaries
Emotional	Feeling of emptiness inside. Disproportionate emotional reactions to situations. General malaise and exhaustion which just won’t shift. Pain and aching in the body.	This often relates to an imbalance in the hypothalamic-pituitary-adrenal (HPA) axis, neurotransmitter and nutritional deficiencies, which can be treated by a nutritional practitioner.	Treatment involves tuning into emotional issues to help clear these, which can be helped by working with a psychology practitioner. Pacing activities alone and not dealing with the emotional issues will not make a difference to this specific type of fatigue.
Wired but Tired	Feel agitated and irritable. Dizziness and brainfog. General ‘exhaustion’ feeling – feeling ‘ill’ all over.	Chronic anxiety and excess mental activity leads to nervous system hypersensitivity and HPA axis imbalance, poor absorption and nutritional deficiencies. This can result in other systems crashing including methylation, detoxification, and mitochondrial function, treatable by a nutrition practitioner.	Treatment here is learning to identify the voice of the “achiever” or the voice of “anxiety” etc. as well as using psychological tools such as the “Stop Process” to recognise these voices for what they are. You therefore learn what appropriate activity levels are for you, i.e. levels that do not over or under do it. One to one sessions with a psychology practitioner or the 90-day programme are applicable. Pacing activity alone and not learning to identify and deal with the “voice” dictating your activities may not make a difference to this type of fatigue.
Neurotoxic	Patients decribe feeling “dreadfully ill”, “toxic” often have many head symptoms including significant problems with memory and concentration, as well as anxiety, which is physical in origin rather than psychological.	Often the key issue here is toxins from heavy metals and/or chemicals overloaded in the system as a result of a methylation crash or a genetic polymorphism. This leads to problems with the fatty cell membranes of all cells in the system, which become disordered.	Primary treatment here is on the biochemical/physical side. Psychology treatment is primarily as a helpful support. Pacing tends to be automatically imposed due to the feelings of illness.
Flu Symptoms	Patients often report feeling “fluey” but these symptoms never fully manifest.	Patient has an immune system imbalance, but this is often a result of other types of fatigue named above. Treatable by a nutrition practitioner.	Flu-like fatigue is often caused by other types of fatigue and the primary aim here is to discover what other types of fatigue imbalances are present. Pacing will usually help this type of fatigue, as the underlying cause is often neurotoxic or post-exertional fatigue.
Environmental	Doing one thing for too long, poor posture and needing to move, blood sugar imbalance and needing to eat, not breathing properly.	Usually changing what you are doing in your immediate body or environment is the key to resolving this type of fatigue.	Pacing makes no difference to this type of fatigue.

Managing PHYSICAL ENERGY levels – “Bouncing the Boundaries”

Managing your activity levels is requires a fine balance between doing enough to keep your body from becoming de-conditioned and avoiding chronically “over-doing” it, constantly putting your body into post-exertional fatigue.

The best guidance we can give is noticing when you have undertaken some physical activity – if you have immediate or delayed fatigue (which is often accompanied by a return of many chronic fatigue related symptoms, not just muscle fatigue) then you have just discovered your current physical limits. For a while you might want to do a little bit less, then after more time, try increasing activity again. This is what Alex covered on Secrets to Recovery (and in various video blogs) when he discussed the concept of “bouncing the boundaries.”

The Optimum Health Clinic model for managing your physical activity levels is one of gently “bouncing the boundaries” to gain feedback as to what stage of recovery you are at and to establish when it is time to increase, stabilize or decrease your activity levels.

This means that each new activity that you wish to introduce should be seen as an experiment. When you feel you have sufficient energy to attempt new activities, build them gradually into your daily routine one by one. It is inevitable that some activities will cause you to overdo things at some point. However if this happens, then you simply know that you need to scale things back again until that activity becomes comfortable, and is unaccompanied by signs of post-exertional fatigue.

Remember that you are in control of your pacing schedule and you can allow yourself to experiment with new activities. If you start to feel anxious about overdoing things and stepping out of your comfort zone then this is the time to tap into your psychology tools such as using the STOP process, to allow you to move forward with things that may be well within your physical capabilities.

It’s okay to check out where your limits are every now and then. As you recover, your physical limits are changing all the time – so be prepared to get it wrong and have a “blip” every so often. Do not worry about occasional blips – it’s just a blip and you will get over it – remember the graph of gradual improvement with blips along the way is the natural road to recovery.

What we are trying to AVOID is CHRONICALLY OVER or UNDER-doing activity levels

After treating thousands of chronic fatigue and ME patients for six years intensely at the clinic, we have discovered that pacing, or rather lack of pacing can be one of most significant reasons many patients have a slow or delayed recovery. The reason is that pacing doesn’t just require a logical or rational understanding about limiting physical activities. A person’s physical behaviour is intrinsically involved and influenced by their internal belief systems, who they are, who they interact with in their lives, as well as their socio-economic situation.

This is a far cry from the limited or reductionist understanding that the orthodox medical profession connects to the illness. The “official” figures on recovery from chronic fatigue syndrome and ME range from 10-30%. This is extremely misleading it because gives the impression that there is some biochemical problem that is unfixable, rather than appreciating that in fact patients CAN recover. Recovery however, is dependant on a holistic understanding that a person’s physical body is a dynamic, adaptive system that is constantly interacting with the self, others and the environment. Understanding this means that patients address the “cause” of their illness at multiple levels or locations – their psychology, relationships and socio-economic conditions.

We want to emphasize here that whilst pacing is something a patient does need to take responsibility for in their lives, this is not something to use to “blame” the patient for not recovering. There is no assignment of “fault” here – as ever, learning to pace is simply part of the ongoing journey of greater understanding, self-discovery and personal growth, which many chronic fatigue syndrome and ME patients go through as part of their recovery. Patients deserve compassion, patience and support from practitioners, friends, relatives and most importantly from themselves, as they perfect the art of pacing.

Here is some more guidance to help you:

Signs you are chronically over-doing it:

Crashing once every week, or every 2-4 weeks
Feeling that you have got your energy back – then going straight into using all it all up by increasing activity levels a lot, and later crashing again
When you get more energy, being unable to hold back. Stick to a gradual increase in activity, not allowing the extra energy to be used by the body for internal healing (rather it is used for external activities)

Most common reasons why you find it difficult to stop over-doing it:

Internal psycho-emotional reasons

Thinking you simply “should” be doing more. This could be called “shoulding on yourself” – it’s a judgemental message from the super-ego (mind) – not the truth from your body or heart – this is often a trait of the “perfectionist” personality type
Stopping activity will mean you may have to face underlying issues of low self-worth – all that activity you were undertaking made you feel okay about yourself – you were a “high achiever” type and now this is identity is being stripped away
Feeling ashamed of being “incapable” or “limited” by the illness
Feeling the need to socialise because of feeling so alone and isolated by the illness, even though the activity with people is wiping you out
Worried about admitting “defeat” – the illness will overcome you if you stop activity
Control issues – if you let go of control you’ll never get better or it will take over you forever
Denial about being ill – you haven’t really come to terms with the fact you have a chronic illness and that you need to limit your activity
You have trouble being vulnerable and asking for the help you now really need
You hate the feeling of being bored, trapped, deprived or limited
Being disconnected or numbed out from your body and your heart/true feelings, which want rest because they live in their head

Psycho-emotional reasons and relationships with others

Making the time and space for yourself requires a level of assertiveness with friends, family and work colleagues or others, which you find difficult due to your people-pleasing nature, and are scared of being assertive
Stopping activity that involves looking after others, being responsible for looking after friends and family – this was where you were getting your self-worth and identity from – you also love and care about people and you don’t want to face the fact that you can’t look after other people any more
Friends and family may have expectations of you behaving in the “old you” way – e.g. as the chronic achiever, these expectations may need addressing and facing

Socio-economic reasons

Difficulty because you have life obligations to look after children, or do a job to make money, or are a carer of relatives (and fund treatment amongst other things)

Signs you are chronically not doing enough:

No gradual incremental improvement is occurring – recovery is static
No blips are experienced
Lack of real commitment to see how you could do more, or following through on professional advice (lack of compliance)
Using supplements or other therapies as a way to rationalize to yourself you are doing all that you can to get better, but really this is “going through the motions” and allows you to avoid facing real emotional issues underneath

Most common reasons you avoid doing more than you can:

You simply didn’t believe it was possible to do more – you’ve been ill for so long you “think like a sick person”, even though your body is actually stronger than you realise
You’re afraid of re-experiencing traumatic incidents from the past where your body was weaker and genuinely “let you down”
Your illness may allow you to avoid certain life circumstances that are painful or scary to face – getting better means you must face them
You don’t know what you want to do in life – you’re not sure yet of your “raison d’etre”
Being numbed out and disconnected from your body and heart/true feelings, which want to do more, but you are living in their head and not listening to these messages

Reasons not to “push through” your energy limits and chronically over-do things:

This section is primarily for all you achiever and perfectionist types out there who trip up by constantly pushing through and classically burning out. This is less important for the anxiety types. There is a very good reason for not chronically pushing beyond the limits of your physical capabilities in chronic fatigue syndrome – because you may actually cause further damage to your body tissues and prolong your recovery time.

Post-exertional fatigue symptoms in ME and chronic fatigue snydrome are likely to mainly be linked to poor production of energy within the mitochondria, the energy factories inside the body’s cells. If your energy production in the mitochondria is impaired for example by toxicity, chronic viral infections or nutrient deficiencies, then you only have a small amount of energy available for daily activities – if you push yourself you are technically running on empty.

Pushing yourself physically beyond the limits of your mitochondria results directly in oxidative damage within the mitochondrial and body’s cells. Imagine driving a car around without sufficient oil or coolant – eventually you would cause lots of damage to engine and need substantial repairs, which could take it off the road for weeks! See the Mitchondrial Malfunction handout on the patient support site for more information.

So you can DELAY, PERPETUATE and PROLONG recovery from your illness if you are chronically creating physiological damage in your cells, by chronically wiping out mitochondrial energy production via excess activity levels.

Reasons not to become chronically under-active:

Just like doing too much activity can be problematic for your mitochondrial function – doing too little also has physiological consequences. Your body’s TOTAL number of mitochondria (energy producing engines) is dependant upon and will adapt to your activity levels. It is well known in sports physiology that people aiming to gain more physical fitness will create a little bit more demand on their body via physical activity, gradually, because the body will respond to this extra demand by INCREASING the total number of mitochondria in the muscles of the body.

People who are physically unfit will have fewer mitochondria overall in their bodies, leading to being more tired and overcome by or tired out by physical activity. Lack of activity in any human generally leads to:

Fewer energy-producing mitochondria in the body, leading to fatigue and breathlessness
Reduced muscle size and strength
Poor lymph drainage leading to internal toxicity
Poor sleep – nervous stress and energy is not used up via daily physical activity
De-conditioning of the heart
Raised cholesterol levels

So even if you are house-bound or bed-bound with your illness DO undertake some gentle form of activity that suits your levels – even if it is just moving your arms and legs daily, to keep some conditioning in the body. There are products online at www.TheOptimumHealthClinic.com, such as the Beat Fatigue With Yoga book or DVD, which includes a simple activity routine for patients with severe physical limitations, as well as routines for those less incapacitated.

Also note that when you are under-active, there is a high risk of falling into “sickness behaviour” patterns. Human beings were not designed to do nothing, and the boredom and lack of fulfilment can further lead to an increase in emotional and environmental fatigue, as well as mental anxiety – in turn increasing a spiral down into further deterioration. Have compassion and acceptance for yourself first if you notice that you may have got caught up in this type of pattern. Generally realising this is a good thing – you just might find you are less physically limited than you thought you were or have been in the past.

Tags: activity management, cfs, chronic fatigue, chronic fatigue syndrome, graded exercise therapy, M.E., me, pacing

Nutrition, Psychology | Alex Howard | February 2, 2010 11:45 am

7 Comments

By mel, February 2, 2010 @ 5:45 pm

Absolutely superb article – very succinctly put! Have these thoughts and ideas that travel round and round in my head vaguely and in pieces with no true coherence and here they are in concrete terms! Thank you. Has enabled me to face a few truths about how I deal with having CFS.
By davina, February 3, 2010 @ 2:35 pm

Couldn’t agree more.
By Irene O'Shea, February 10, 2010 @ 3:10 pm

Thank you for this excellent article. It is obvious that the writer knows exactly what they are talking about. I have spent years going to various people who claim to know about ME/Chronic Fatigue and have built up my hopes so many times only to have them shattered again. The best help I got (next to my very understanding and supportive husband!) was from attending a Cognitive Behavioural Therapist (CBT). He helped me “move on” from that “stuck mode”. He helped me realise that lying in bed every time I was exhausted was not necessarily helping. He advised me to sit down and relax more and instead of burning myself out when I did have energy, to do something for about 10 minutes and sit down again. I am still trying to learn to pace myself, but it is very hard when you have teenage children and eldery parents to look after. It has taken me years to get rid of the “guilty feelings” and wondering if it was all “in my head”. As your article says, learning to determine which type of tiredness you have is important and knowing how to deal with it. I now know that there are times when I need to go to bed to rest and other times when it is better to just sit down on a couch and relax. It is also important to learn to accept help from anyone who offers and not to be too proud and feel inadequate. I wish that I had done this in the early stages of my illness. It is very hard to change from being a perfectionist to not worrying about having the perfect house! I have also learnt to say “no” to family and friends and not try and please everyone all the time. Hopefully your article will help people who are in the early stages of ME to stop and change their lifestyle before they get stuck in the “sick mode”. It is great to read and listen to so many “positive” articles in your site. There are too many people out there who are jumping on the bandwagon and claiming to know how to cure ME. Unfortunately it is a very complicated illness but your website will help people have a much better understanding of how to cope with all the symptoms. Part of my problem was that I stuck with gps who told me that there is no cure. I am now with my fourth gp and he is carrying out lots of tests which I should have done years ago. I am hopeful that I will eventually get to the root cause of my fatigue. So, to those of you who have given up hope of finding a cure, STAY POSITIVE, DON’T GIVE UP and PACE YOURSELF.
Thanks again and keep up the good work!!
By Andrew, February 10, 2010 @ 7:58 pm

Another very insightful article.
If anyone understands CFS/M.E. better than the OHC, then I haven’t come across them. Clearly written by people who’ve been through it and come out the other side.
By Pauline McLeod, February 16, 2010 @ 8:18 pm

Wonderful document. So much information I didn’t know and so helpful. I wonder if you had thought of doing anything on ‘how to pace’, i.e. putting activities into mental and physical; into low, medium and high and alternating mental and physical and low, medium and high. Also the importance of relaxation between the activities. I was taught pacing in this way at the CFS Clinic at Queens Hospital and found it really helpful in managing symptoms. So often people on your site and other ME sites don’t know the basic principles and tend to boom and bust. Is it worth considering or is it too prescriptive. It certainly helps to identify when you have been overactive and therefore helpful to find your base line in order to gradually increase activities and ensure that you aren’t underactive. Don’t intend to give you more work, just a thought!!
By Alex Howard, February 17, 2010 @ 11:47 am

Hi Pauline,
Thanks for your comments – the reason why we don’t have prescriptive activities is because it really is different for different people at different times – the real key is patients learning to listen to their own bodies to tune into what they really need at that time.
Warmly,
Alex
By ed cross, March 7, 2010 @ 2:33 pm

Dear Alex A good article which mirrors my experience well.
I have to work and it has pushed me into doing more than I would like and often than is good for me, but using the strategies you discuss I have coped.
I suspect that there are longer term health
implications such as damage to Heart tissues and Cancer that seldom seem to be part of the recovery picture. Being positive is good, getting real is better.