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Coping with CFS:
A Guide to the Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

SUFFERERS:

Diagnosis | While you are ill | Managing CFS | Rehabilitation

CHILDREN

WORK:

Returning to Work | Patterns of Working | For the Employer
Administrative Legal Issues | Support Mechanisms

Contents

SUFFERERS

Diagnosis

• Seek an early but thorough diagnosis. Many doctors may consider that you have post viral fatigue, post viral problems or post viral syndrome initially. However there is now an accepted definition for CFS and some people will be diagnosed quickly.
• Supportive counselling may be useful particularly in dealing with feelings of isolation, cognitive problems and problems that result from muscle weakness, fatigue and loss of libido.

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While you are ill

• People suffer from Chronic Fatigue Syndrome in varying degrees of severity. Some continue to work but feel constantly tired, whilst others have such severe symptoms they are bedridden or housebound. The symptoms can also fluctuate from one day to another.
• Fight the disease, not the symptoms; you may need to give in to them.
• You are ill. You may need some time in bed. Rest normally brings some improvement.
• Seek a level of activity that is appropriate to your symptoms at the particular time.
• If you are waking in a sweat at night you are probably doing too much.
• General anaesthetics, antibiotics and vaccinations may increase your symptoms. Use only when absolutely necessary and make sure your medical supervisor knows of the possible after-effects.
• Allow yourself to grieve for what you have lost.
• Allow yourself to express your anger but don't let it become a permanent way of responding to the illness. You may need to work through feelings of loss and anger as part of the healing process.
• Distressing and persistent symptoms such as insomnia or excessive pain can often be treated or at least reduced by your doctor. Some people may benefit from complementary therapies. If you can treat a symptom safely, do so.
• It is advisable to avoid infections and contact with infected people but it is important not to cut yourself off from others any more than necessary.

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Managing CFS

• Become well-informed about your illness. Get interested in getting better.
• Consult your doctor or counsellor immediately if you feel depressed or anxious. Counselling and/or medication may be of great value in relieving these symptoms.
• Remain hopeful. Research is taking place all over the world, knowledge is increasing rapidly and is being disseminated widely both on the illness and its management.
• Try keeping a diary. You may be able to find patterns or cycles in your illness and use these to pace yourself and as a preventive measure against further relapses.
• Maintain a balanced diet of fresh food where possible. Limit additives and processed foods. Choose seasonal foods which are fresh whenever you can. If you believe you are intolerant to some foods do not embark on a special diet without first discussing this with your doctor.
• Avoid prolonged bed rest unless it is absolutely necessary, to prevent yourself being further weakened by immobility.
• Keep things in perspective. Use a scale of one to ten to decide just how disastrous a problem (forgetting a word, missing an appointment, being off work) really is.
• Don't take on too much.
• Tune into your body's messages. Learn to pace yourself to live the fullest life possible within your limitations.
• Be flexible. Because of the unpredictable nature of CFS, you may have to change or postpone planned activities.
• When you have identified conditions or activities which make you feel worse, avoid them but consider other ways to replace them and preserve your quality of life.
• Allow extra time to avoid panic or exhaustion. Leaving fifteen minutes early for an appointment allows you to arrive less stressed and anxious.
• Import brain power. When not sure what to do, ask other people what they think or how they would solve the problem.
• When you are feeling relatively better, be careful not to try catching up on all the things you couldn't do when you were too ill. Test your limits carefully.
• Give your day a purpose. List the things you want and/or need to do and when you complete a task, mark it off with a highlighter pen.
• Divide big jobs into smaller components. You can then complete these smaller sections interspersed with rest periods, or share them with another person. Organising your whole house may be overwhelming but you could have success with a drawer.
• Alternate more active tasks with those you can tackle sitting or lying down. You may have to retrain yourself to sit for some everyday tasks. Begin tasks with the understanding that you can and should stop and rest when you need to.
• Avoid repetitive tasks. If you have to do them, vary the movements needed to minimise the stress on one particular area and thus any resulting weakness or pain.
• Try to do something constructive every day, no matter how small an achievement it may be.
• Deal with the fatigue first. When you feel exhausted, rest before commencing an activity and you might then be able to think clearly, write well or do a physical chore without relapsing immediately afterwards.
• Let people close to you know what your limitations are but don't let them 'mollycoddle' you.
• Ration your limited energy and think of it as 'energy credits'. Use the first credits for yourself then balance the remaining over the rest of the day. You must be kind to yourself.
• Listen to your body. Do mentally taxing tasks when your mind is sharpest and physically tiring ones when you feel most energetic.
• Decide on your priorities. Do the most important things (to you) first. You may find that things which used to take a lot of your time, energy, mental and emotional effort are simply not that important any more. Don't forget your priorities when you are well again.
• Use appropriate aids for tasks, such as a stepladder for reaching high objects, a stool for sitting to iron, a long-handled dustpan & brush to save bending etc and check out centres which display and demonstrate aids for people with disabilities.
• Delegate. Make a list of regular chores and let each family member choose a few. They may then be more likely to do them without nagging.
• Use book rests to read, or a pillow on the tummy to ease pain in your arms.
• Learn to compromise. Be realistic in your expectations of yourself at home or in the workplace.
• Accept help when offered and needed.

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Rehabilitation

• Do 75% of what you think you can do.
• Keep a diary to remember how you are and what you have actually done. You may have more of a sense of achievement if it's written down. This can also be a valuable tool medically.
• If you feel able to try some exercise, modify basic exercises so that they can be done safely. Be aware that even gentle stretching and relaxing while in bed can be beneficial compared to no exercise at all. But if some muscles are particularly painful, do not exercise them until they have settled down.
• A brief routine of stretching and breathing exercise at bed-time may help alleviate sleep disturbances.
• In sexual partnerships it is important to be honest with your partner. If, for example, you are unable to make repeated or sustained movements, say so. You could take a more passive role temporarily or use the opportunity to rethink and experiment with your romantic/sexual passions.
• Never admit defeat.
• Encourage and welcome humour in your life.
• Find a new, exciting, but attainable, challenge to build self-esteem and a sense of achievement or just to enjoy yourself.
• Going on a short date is better than no dates at all.
• Live to your fullest possible capacity but every now and then carefully test your limits.
• Stop trying to be perfect. Some jobs don't merit it and you may be happier having four cupboards looking passably clean than one organised to perfection.
• Some sufferers find that keeping to a strict routine reminds them of where they are supposed to be and how much they are supposed to be doing - or not doing.
• When you are considering undertaking a major task, ask yourself, "What is the worst possible thing that can happen if I do this task?" and "What is the worst possible thing that can happen if I don't do this task?" You then need to weigh up the pros and cons of actually doing it.
• If you need it, seek help in the home.
• If you run a household get each member of the household to cook at least one evening meal per week.
• In any household of more than one, 'things' accumulate in communal rooms. 'Rake' them all up at regular intervals and put the lot into a box for everyone else to sort out and put away.
• Reorganise your kitchen or work area to minimise reaching and bending.
• When cooking, get out all ingredients and utensils first so that the preparation requires less energy and concentration.
• Use reminders. Carry a note-book. Place 'Post-it' stickers on your refrigerator, on your steering wheel etc.
• To reduce the strain on your arms, avoid pegging clothes on the line. Sit down comfortably inside and hang the whole wash on coat hangers. (Socks and small items can be pegged along the bottom wire.) Then peg the coat hangers on the line.
• Arrange for the bank to pay bills for you or join Phonebank.
• See if your local supermarket delivers. Many do.
• Most major centres have mobile libraries or organisations such as Red Cross which will change library books for you.
• Keep a basket or box at the top and bottom of stairs to reduce journeys up and down.
• Apply for a disabled permit for your car so you can avoid walking long distances.
• If you find waiting in queues a problem or you like to watch your child's ball game from the sidelines, try using a 'shooting stick' or a handy little combination seat/walking stick. These are available from some furniture stores.

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CARERS

• Assure the sufferer of your belief and support.
• Respect the sufferer's individuality.
• Avoid being patronising and include the patient in any decision-making as a full member of the family.
• Build the sufferer's confidence as much as possible and encourage them to maintain personal appearance (hair, dress, etc).
• Encourage activities which are within the patient's capacity and give a sense of achievement or useful helping.
• Recognise mood swings as part of the illness and help family and friends to see them in this light also.
• Be philosophical about unexpected changes of plans.
• Keep the patient's surroundings as cheerful and pleasant as possible but try to avoid excessive noise while they are ill.
• Encourage the sufferer to take some fresh air in the garden or short trips further afield when enough strength returns. Changes help build the expectation of improvement.
• Try to alleviate the sufferer's natural feelings of guilt because of financial difficulties or their inability to share the workload, or to be a full marital partner, a 'good' parent etc. Life will get better.
• Keep your own contacts within the community.
• Don't completely lose sight of your own needs. You will be a better carer if you don't let the CFS take you over also.
• Help your own friends to talk with you about the illness or your role as carer. Often they simply don't know what is 'OK' to talk about.
• Let the sufferer talk about CFS and how it's affecting them. Realise that this is their present reality and that talk will relieve some frustrations for them but, also, try to enlarge the sphere of thought and conversation.
• Visitors can be very welcome. They also cheer the sufferer with their concern and lessen their sense of isolation.
• If you think you may be being insensitively breezy and cheerful on one hand and telling the patient to get a better grip on things on the other - apologise - you are both human.
• Do not denigrate any form of help the patient wishes to try. 'Alternative therapies' can help and the patient's wish to do something is important and understandable.
• Persistent, deepening depression should be treated with great care. Seek medical advice.
• In observing the patient on a day to day basis, try to notice things which help or hinder recovery. Substances which might be causing reactions should be noted and avoided. These can be almost anything from foods to cleaning substances, toilet preparations or fumes from cars, gas, paint, etc.

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CHILDREN

• Listen to your child.
• Believe your child.
• Respect your child.
• Love your child.
• Your child is the best judge of how he/she feels.
• Remember that CFS is NOT a behavioural problem. It is an organic disease.
• Understand that however ill the child feels, there is no threat to life and he/she should eventually get better.
• Be optimistic about recovery and let your child know this.
• Try to encourage a generally healthy lifestyle in the child. With CFS, it's important to avoid extremes both in effort and rest.
• Try to ensure that the diet remains balanced and nutritious.
• Build a simple routine into the day to give it some structure and thus help to pass the time. A day is a long one for a child.
• Try to get sleep problems under control, in consultation with the child's doctor.
• When a sick child is awake encourage them to get out of bed and into a comfortable chair in a quiet place.
• If the child needs to rest during the day, it is better on the whole for them to lie on a settee rather than return to the bedroom.
• Ask friends to babysit so that you (the carer) can give yourself and their brothers and sisters time and the occasional outing.
• Siblings need reassurance that the illness isn't catching and that the child sufferer will, in time, get better.
• Be prepared to deal with sibling resentment. It is natural.
• A pet is always a solace for a child, particularly if he/she is able to take responsibility for looking after it. Consider a small pet such as a goldfish, mouse, hamster, guinea pig etc. However it is important to consider and check that it will not increase any allergies suffered by the child.
• If your child finds it difficult to sleep at night, a Walkman might be a good idea, leaving the rest of the family to sleep undisturbed.
• Expect only essential learning from a child sufferer.
• The child with CFS should, in general, be excused exercises but encouraged to try gentle physical activity and games.
• Exams should be entirely voluntary for any child suffering from CFS.
• If a child is missing 20% or more of regular schooling or if a child has CFS severely enough that there is constant fatigue and/or pain and mental dysfunction, an occasional home tutor could keep them up with their class.
• Encourage teachers to visit your child and to plan their education program in consultation with you and their doctor.
• As a child's symptoms improve, he/she may be encouraged to return to school for a few hours each day or half-day to ease into the full routine.
• Keep some form of contact with the child's school, continue to attend school meetings and arrange to get a copy of the newsletter etc if there is one.
• See if the school can help by, for example, lending books from their library.
• When your child starts to get better, ask if he/she could attend a school club or perhaps an art lesson.
• It is vital that a child has some link with children the same age.
• If a child has very limited energy, use it for social life rather than school work. He/she can always catch up with missed school work but the same cannot be said for social contacts and confidence.
• Encourage the child sufferer to do things at home which they are good at e.g. cooking, art, craft, embroidery.

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WORK

Returning to Work

• Employees considering returning to work need to know their rights.
• Work or rest? Some sufferers will benefit from remaining at work (perhaps on reduced hours) while others will need to stop work and rest completely. No single approach will fit all cases. Counsellors and Medical Officers have to listen carefully and take detailed histories before they decide any work program.
• The person with CFS should be encouraged to build up his/her general health and not rush back to the paid workforce. A too early return to work can be devastating and prolong the illness.
• Return to work should be gradual. It is important that people not be driven back to work when they can't cope with it, physically and mentally. If they do return too soon and collapse again, it may damage them physically and destroy their morale. Where possible, a return to work on a graduated basis may be more successful than attempting to return full-time immediately.
• Employees should be made aware that they may be offered permanent part-time work when attempting a graduated return to work and that before accepting any such offer, they should be informed of the effects of such permanent part-time work on their superannuation and leave entitlements.

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Patterns of Working

• Flexible hours may be vital in allowing an CFS sufferer to remain at work or return to it. It is not feasible for many sufferers to work to a rigid timetable each day, given the variability of symptoms from day to day and hour to hour. Where return is being planned, the formula "undertake to do X hours a week," rather than "Y hours a day", may be preferred (at least some Medical Officers are prepared to make such recommendations). The sufferer may then keep his/her hours up by working more when somewhat better, within an overall target. The employer may want to agree on hours per day but that may not always be possible for particular sufferers
• For some people a normal pattern which allows for resting may be most suitable: e.g. (when able to) working Mondays, Wednesdays, Fridays, or Monday, Tuesday, Thursday, Friday. However in all such cases, there will be a need for flexibility to make up time lost on bad days (where that is possible).
• Professor John Dwyer AO, of the University of New South Wales, has referred to working from home as the natural first step in any rehabilitation program. For some employers this is a controversial matter, though some have permitted such arrangements.
• It is virtually impossible to say beforehand what hours a person can work when returning to employment. It is probably better in the first instance to be conservative and build up from there. One indication may be what time a person can spend doing work-like duties at home, but hours in the workplace are inevitably more tiring than those at home because of energy expended on travel, movement around the workplace and interaction with other people, as well as the demands of the job.
• Permission to do at least some of their work at home may be vital to many CFS sufferers. It enables them to decide when they can work and for how long at a time, and enables some work (such as reading and some writing) to be done while lying down. It also avoids the extra energy expenditure mentioned in the previous point.
• Where possible, provision of facilities for resting in the workplace may be a great help to sufferers, so that they can rest for a while and then return to working. This is not always feasible, but provision of a comfortable chair for reading away from the desk may be the next best.
• Duties may need to be varied when an employee first returns to work because of the energy loss involved in work demands (such as tight deadlines, competing priorities, and so on) and because of the problems of short-term memory loss and concentration difficulties.

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For the Employer

• The employer has probably invested huge amounts of dollars in developing this employee. It is not sound to cast off such investment at the first sign of difficulty, especially as training someone else who is new to the work is risky and it takes a number of 'lost' months for a new arrival to get up to even a rudimentary working knowledge of an area's work.
• It is essential to stay flexible in approach when an employee returning to the paid workforce has CFS.
• With flexibility many people return successfully to work.
• Recognise that CFS is an organic disease.
• Recovery is never overnight so a long period of patience is required.
• Listen to the needs identified by the employee. Just as each work environment is not identical to the next, not all people with CFS have the same difficulties.
• Recognise that difficulties will arise and that setbacks are just challenges for all involved to adjust to. They are not failures.
• Remember that the employee with CFS is already 'working' on surviving and getting better under extraordinary difficulties - it takes courage, character and energy (the last of which they have in short supply) to attempt to return to the paid workforce
• Becoming informed about the nature of the disease will enable understanding and give you realistic expectations and sensible solutions to problems as they present over time. CFS does not have a one-off solution.
• People with CFS experience daily and hourly changes in their tolerance to activity. This is beyond their control.
• Anxiety is a natural outcome for people with a chronic illness like CFS. All up, they are under an enormous 'hidden' stress, so limit the amount of stress caused by returning to the paid workforce; otherwise recovery will be jeopardised.
• Overdoing it is usually more of a problem with CFS sufferers than 'underdoing' it. Dr Belinda Dawes advises against trying to do what sufferers think they can do; they should rather aim to do 75% of what they think they can do.
• Once a reasonable return of functioning is experienced, vulnerability to excess activity continues for quite some time.

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Administrative Legal Issues

• Compensation claims for the onset of CFS seem less likely to succeed than claims for exacerbation. Employees need to balance the possible gains from a compensation claim against the energy needed to make it.
• Those who run out of paid sick leave may be able to obtain some assistance from discretionary grants of special half-pay sick leave for employees who have exhausted their sick-leave credits.

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Support Mechanisms

• If there are several sufferers in the same agency, they might benefit from meeting together as a mini support group.
• Contact with the Commonwealth Rehabilitation Service may be helpful to an employee considering return to work.
• Australian Public Service employees on leave under workers compensation regulations will have their return to work overseen by an outside Rehabilitation Officer who will ensure that work hours are always within the employee/sufferer's ability level.
• People on Social Service Payments and other non-compensation employees may be eligible for a return to work program originating at home and overseen by a member of the Rehabilitation staff at the Canberra Hospital.
• The local CFS Society provides support for members in various ways. Join your local CFS Support Group.

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REFERENCES

Catchpole, Jane Dip. C.O.T., S.R.O.T. M.E and O.T. A Guide for Carers. ME Association (UK)

Collingridge, Andrea. Welfare Consultant. Coming to Terms with M.E. ME Association (UK)

Dawes, Dr Belinda & Downing, Dr Damian. Why M.E.? A Guide to Combating Post Viral Illness. London: Grafton Publishing, 1989.

"Free yourself from Chronic Fatigue". Prevention Magazine, January 1990.

Gadd, R. "Can Psychologists help me?" The Psychologist, January 1989.

Goodall, Martin. "M.E. and My Attitude." ACT ME/CFS Society Newsletter September 1990.

Guidelines for Sufferers. ME Association (UK)

Irving, Celia. "Raising a Family from an Armchair." ACT ME/CFS Society Newsletter March & December 1990.

Macintyre, Dr Anne. M.E. Post Viral Syndrome. London: Unwin 1989

Smith, Dr David. Some Guidelines on the Education of Children. M.E. Association (UK).

Smith, Dr David. Understanding M.E. Revised edition. London: Robinson Publishing, 1991

Swinburne, Dr L. Pathologist Exercise and Myalgic Encephalomyelitis. ME Association (UK)

"The Chronic Fatigue Syndrome." Modern Medicine July 1990

Way, Cameron of CFS Advocacy, Armidale NSW. From an article in Chameleon Newsletter of the ACT ME/CFS Society. March 1992

Wiseman, Anna. "School Rules" M.E. Association (UK) Newsletter Spring 1990 .

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Reproduced by kind permission of
The ACT ME/CFS Society Incorporated
PO Box 717, Mawson ACT 2607 ... (02) 6290 1984

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