By Prof. Anthony J. Pinching
Editor’s Note: Prof. Anthony J. Pinching is Professor of Immunology and Head of the Chronic Fatigue Services Clinic at St. Bartholomew’s Hospital in London, England. Prof. Pinching wrote these guidelines as medical advisor to the Sussex & Kent ME/CFS Society.
Each person with Chronic Fatigue Syndrome (CFS)/ME needs to have a clinical management plan developed according to their condition, its characteristics, severity and impact and to their personal and social circumstances. The plan can be derived from a thorough understanding of their own situation in discussion with a health professional, combined with an assessment of the relevance and appropriateness of the various tools available for its treatment.
Different people have different needs, and the needs may also change over time. The plan should be adapted according to the person’s experience with options that are tried. Some patients may have particular preferences about the style and approach to management; this should inform the development of the plan. It is very important that you “own” the plan and its various elements, and understand its rationale, the expected benefits and potential hazards. There must be a clear means by which your experiences can be monitored and guidance offered for adapting and refining the plan.
There are many sources of advice and information. This is helpful, but it can also be quite confusing. You must feel able to make your own choices and not to feel obliged to try everything. What worked for one person may not work for another. Most experienced clinicians will be familiar with this, and will help guide the person through the options. You should assess the relevance of the approach to them and in particular consider what evidence of benefit there is, what harms could result, and how strong and representative the advice is.
Having decided on some choices, it is sensible to take some time to reflect, and if necessary take advice from others. You may want to consider a trial period in which you try something, with a definite time-frame for assessing its impact. During these phases, it is best not to change anything else, so the impact of one thing can be clearly assessed. If it doesn’t suit you, the question will be: is it the right idea, but done in the wrong way (e.g., duration, type, or dose)? – in which case changes can be made; or is it just not right for you? – in which case alternatives could be considered.
Is it CFS/ME, or is it something else, or both?
First get a firm diagnosis. The right treatment and management depends on treating the right thing! Lots of medical conditions can sound very similar, because the body has a limited vocabulary of symptoms.
Diagnosis often depends as much on the way symptoms behave as on the pattern of symptoms themselves. One of the doctor’s crucial roles is to assess what the symptoms mean, and to formulate a diagnosis. This will be based on the clinical story, the findings on examination and, for some conditions, the results of tests. Diagnosis is also something that can and must be kept under continuous review; other things may happen over time that suggest that the diagnosis be re-evaluated or that another problem has developed in addition.
Some people may have more than one clinical problem; these are likely to interact, the effects of the one affecting the impact or severity of the other, and vice versa. In some cases, the association of more than one condition is just a coincidence; in some, both problems result from the same trigger; in others, one problem is secondary to another. All conditions need to be taken into account in developing the management plan.
One of the characteristic features of CFS/ME is the delayed way in which setbacks can occur after attempting too high a level of activity. This is frustrating and makes it hard to know at the time how much activity one can manage. Repeated setbacks may also delay recovery. It becomes important to know from experience what activities are manageable without setbacks so as to determine a current baseline of sustainable activity. It is important to take account not only of physical activity, but also of mental and emotional activity – the latter are often the most consuming of energy for people with CFS/ME. At all stages it is important to have a balance between different types of activity, especially between “have to do” and “want to do” things.
Learning from experience can take time, and because of the delayed impact, it can be helpful to have a rough daily diary of how you feel and what major tasks you do, to see the patterns. You should try to spread out and break up activities to avoid peaks and troughs. Mixing different types of activity can help, and it is sensible to build in rest periods with true relaxation between tasks. Any unavoidable large tasks may need a period of extra rest in advance to save some energy. It is useful to think that each day has a set and limited amount of energy and to try to avoid exceeding this, or else you are borrowing from later days.
Once a sustainable baseline has been established, symptoms may diminish and energy levels can increase a little. This is a time to very carefully try increasing activity. Just one small extra task each day, or lengthening an existing activity, may be enough. After a few days it will be clear if this is OK, in terms of not causing a setback. If there is no problem, a further increase can be tried. The key is to remember that, at the beginning, the steps should be small, even when there is the furthest to go. If the step is too big or taken too soon, then go back to the previous level, re-establish the baseline and start again a little later with a smaller step.
These principles need to be adapted to the level you are at, and your circumstances and preferences. For some, the steps will be basic tasks of daily living; for others, it may be physical exercise or brain tasks; and for others, it may be work or family activities.
Balance, sustainability and a careful approach to building up activity are key to quality of life and to the prospects of improvement. Realistic and achievable goals, and ones that are meaningful to you, are especially important.
Physiotherapists or occupational therapists may be able to help you plan and monitor your progress although, with basic guidance, many people can manage on their own. These approaches are sometimes formulated as “pacing” or “graded activity.” Finding an approach that works for you is more important than what it is called!
It is hard having an illness and coping with the impact it has on functioning, role in life and quality of life. While many people are very adaptable, some may need help in adapting to illness. This includes finding ways of thinking about the illness and its impact. It also means adjusting your behavior to take account of illness and the need to work on a management program towards stabilization and then improvement. These can be big changes to make and can be especially hard to achieve when you don’t feel well. Working out what to do if you have a setback is also vital, as these can be upsetting.
Professionals can help by working with you to identify the things you find most difficult, in terms of adjustment of attitude and behavior, if this process is too hard to do on your own, even with broad guidance. At an assessment visit you will work out where the problems are and agree a way of dealing with them, developing skills to help you in this difficult journey, to maximize what you can do at the time and to maximize the prospect for improvement. There will often be agreed goals to be achieved.
As time goes on, the plan can be adapted in the light of experience. This approach is sometimes called cognitive behavioral therapy (CBT). It is used in many conditions to help person adapt to their illness or its management. It may be provided by psychologists or other professionals who have had formal training. It isn’t one pre-set approach, but rather a set of approaches, shaped according to your needs.
Changing the context
While you may have to make many changes, it may also be necessary to change things around you, to make it possible or easier to manage the illness. Sometimes you may need others to help you with this. For example, people close to you may need to understand a bit about your condition, how it affects you and how they can help you. However, it is unrealistic to expect most people to understand fully what you are going through.
Employers may need advice about your situation, either directly or through occupational health services. They don’t have to know the detail, but simply how it affects your functioning, and what new arrangements need to be made to help them plan and to help you recover. Similarly, teachers or tutors may need guidance about what you can do, and how they can help you study.
You may need help with applications for benefits, in terms of what you are eligible for, how to apply for it and how to appeal, if you are refused; welfare rights organizations, CFS/ME Groups, Citizens Advice Bureau [in the UK], or social workers can help here. Doctors or other therapists can help in providing letters or evidence in support of your application/appeal. You may need similar help with insurance schemes, pensions, etc.
Managing the symptoms
Some symptoms are very intrusive and unpleasant. If a way can be found to reduce them, this can improve quality of life and may even liberate some extra energy. Pain is an obvious example. Other symptoms may cause a vicious cycle, where a symptom caused by the illness can further exacerbate the illness and delay recovery. Sleep disturbance is among the most important of these. Other symptoms that can often be helped are muscle pain and tension, dizziness, headache and irritable bowel symptoms. Different approaches to symptom control include medications, adjustment techniques, change in lifestyle or dietary modification.
If you get anxious or depressed about your situation, or have these problems at the same time as CFS/ME, they will also need treating. Low mood makes everything feel worse, and anxiety can burn up energy you don’t have to spare. Having anxiety or depression doesn’t mean that the illness is caused by that. Having treatment for them doesn’t mean that either. On the other hand, if your psychological needs aren’t attended to, this can make the experience of illness worse, make it harder to adjust and worsen quality of life. Treatment may involve medication or psychotherapy.
Treating the illness?
It would be good to think that we knew how to do this, but most of the above is about managing the consequences of the illness and maximizing the opportunities for improvement – most of which is achieved by the natural process of healing. Many practitioners are trying to find ways of treating whatever the underlying process is. Currently, these approaches are speculative therapy or research trials.
You may want to try some of these, once you are established on your own management plan, based on tried and tested methods. But don’t feel obliged to – by anybody. Not everyone wants to be part of the “finding out” process.
If you do try something, make sure you know what the risks are and what experience has been gained so far. Be clear about the rationale and the justification for the approach. Be realistic about the likely benefits, and don’t be too disappointed if it doesn’t work for you.
Professor Anthony J. Pinching
Department of Immunology
St. Bartholomew’s Hospital