Guide to CFS Management

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" Guide to the Management of Chronic Fatigue Syndrome "

By Prof. J. Pinching (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.)

General Principles

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.

Activity Management

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!

Adjustment

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 J. Pinching

St. Bartholomew's Hospital

London, UK