The ME/CFS Society of NSW Inc.

Managing ME/CFS
While there is no cure as yet, varying degrees of symptomatic relief may be possible in some instances. Different things work for different people so if you find something that works for you, stick with it until it no longer does or you no longer need it. Beware, however, of expensive rip-offs, shonky "cures" and emotional blackmail at times when you can be very vulnerable because of despair and clouded thinking. If someone promises you a major transformation, always ask to see the research papers and the scientific proof - and no matter how convincing the claims may sound, talk to your doctor or the Society first. Management plans should always be individually tailored and professionally guided.

Rest
Probably the most important aspect is to learn how to pace yourself so that you do not overdo things. The guide is to only do as much on a daily basis as you can repeat regularly. For many people, especially those with family and other commitments, life can be very full - but try to structure your life and your days to ensure that you make and take time to get all the rest you can.

Adjusting your lifestyle
Lack of energy and strength saps lifestyle. Often major changes are needed and making these can be difficult, especially if you have a family. You may find you need to move to another home if chemical and external stresses are making your condition worse. Or you may find you have to give up recreational activities you love because there's simply no energy left for non-essentials. In acute phases, it may take every scrap of your strength just to get by. But at other times, when you do feel stronger, spend some of that precious energy on doing things that bring you pleasure. After all, it's been suggested that enjoying yourself can help boost your immune system!

Accepting that you have a chronic condition and making the necessary adjustments in your life can not only reduce the stress of trying to kick against the traces all the time, but can also point you in the direction of eventual recovery. Yearning for what was or what might have been or pretending that there's no problem at all will not do you or those close to you any favours. Instead, try to come to terms with the situation as realistically and practically as you all can.

Counselling and support
Counselling can help you make the necessary adjustments. It doesn't have to be with experts - although people familiar with ME/CFS and trained to help can offer invaluable ideas, solutions and suggestions. At times, though, you may benefit as much from simply talking with others in the same boat: people who have or have had ME/CFS.

Medications
These may include a range of prescription and pharmaceutical products including pain relievers (analgesics), such as aspirin and non-steroidal anti-inflammatory drugs (known as NSAIDS), and antidepressants. Immunotherapy using gamma globulin has also been used in some trials but the results are inconclusive, and work is continuing in testing a new class of drugs known as SSRIs (serotonin reuptake inhibitors), which affect brain chemicals. Some people with ME/CFS may also benefit from medication to combat nausea and sudden drops in blood pressure. However, none of these treatments is a magic wand - and all vary in their effectiveness in individual cases.

Supplements
Some people swear by supplements such as evening primrose oil, vitamins (including vitamin B12 by injection), minerals and trace elements. But again, the effect on individuals is inconsistent and unpredictable, and scientific trials have yet to come up with firm and consistent conclusions. There have been some suggestions that magnesium may be of benefit if natural levels are low but contrasting studies suggest its value may be doubtful. Trials for evening primrose oil have shown that some but not all people benefit from regular use. Remember too that sensitivities can crop up with naturally occurring chemicals just as they can with synthetic substances, so avoid megadosing on vitamins and other supplements without professional advice.

Exercise
If you can exercise, do - but make sure that activity is balanced with rest. Marathon running, football and competition squash may be out of the question but you may find an activity level that not only suits your condition but offers satisfaction and relaxation too. Swimming, walking and gentle forms of exercise such as tai chi or yoga may appeal. But keep in mind that the effects of any exercise may hit you some time after doing it, so take that into consideration too when planning activities. Your exercise tolerance level can also vary at different times and there may be periods when even putting on your shoes may be exercise enough. Listen to your body and be guided by it.

Nutrition
A good, balanced diet is important to good health. But if you have food sensitivities, it may be more difficult to structure your diet to ensure you get the nutrition you need. Consult a trained nutritionist, allergy specialist or dietician.

Relaxation techniques
The range of such techniques can vary from the physical, such as muscle relaxation, to the mental, such as meditation - and some may not suit you at all. However, a number of people with ME/CFS find that meditation or visualisation is helpful - although, during acute phases, it may be very hard if not impossible to meditate or visualise. Some people, too, say that massage is of benefit, but others find it causes symptoms to flare - a lot depends on the masseur, the technique and your individual response. Don't forget that there are other less structured form of relaxation - and they can be as simple as listening to music, sitting in the garden or watching a movie.

Alternative therapies
Again, your response to alternative therapies such as acupuncture, acupressure, herbalism, homeopathy and others can be very individual. Some people with ME/CFS find certain techniques help, others that their symptoms become worse. However, beware of extravagant claims of "cures" and of emotional blackmail along the lines of 'If you were really serious about getting better, you'd try this'.

Sleep
Sleep problems are a common feature of ME/ CFS. Perhaps you wake feeling as exhausted as when you fell asleep, or find you can't sleep (insomnia). Some people also feel they sleep very lightly or have such vivid dreams and nightmares that they wake up agitated and upset. One of the most constructive measures you can take both to aid everyday management of your condition and to aim towards recovery is to establish a good sleep pattern - sleep hygiene, as some doctors call it. For some people, this is difficult no matter what they try, but others may find even simple measures, such as thicker curtains to make the room darker, will help.

Stress
Stress can take many forms - physical, emotional, mental or a combination of these - and with ME/CFS it's very much a chicken-and-egg situation. The condition is not likely to make handling stress any easier - and stress is not likely to make handling the condition any easier, either. So, where possible, make it a priority to minimise stresses in your life.

Alcohol and other drugs
Like other stimulants, alcohol and other recreational drugs - including tobacco - can intensify symptoms in some people. At the same time, the condition itself may reduce your tolerance levels so, whereas in the past two drinks may have had little effect, now the same amount of alcohol may put you under the table, and some people may become intolerant of alcohol altogether. The key is to reduce your exposure to any unnecessary chemical stimulants.