M.E. Post-Viral Fatigue Syndrome How To Live With It


Basic Principles of Self Management

The basic principles of self management are:

  1. Get a firm diagnosis if possible. It is very important to exclude other conditions, some of which may be treatable. If other illnesses have been ruled out and your history and symptoms are typical of ME, but your doctor is not able to call it ME or CFS because of denial that it exists as a disease, you may have to manage your illness on the assumption that ME or CFS are the probable diagnosis. Sometimes a referral to a specialist can clarify the diagnosis and even referral to a psychiatrist can be useful when a mental health problem needs to be ruled out.

  2. Become informed. There is plenty of information about ME and related illnesses around - in self help books on the Internet, from local support groups.

  3. Energy management is the cornerstone of coping with an illness whose main symptom is abnormal fatigue. With ME, there seems to be a problem with the production and use of energy in individual living cells, most especially in muscle and brain cells. A useful illustration is a bank balance of money. If there is not much money (energy) coming in every day, you have to budget carefully. If you overspend you get an overdraft. If your body overspends every day, the increasing overdraft may suddenly have to be repaid, with a resulting crash and a relapse. So if you crash because no more overdraft of energy is available, you may have to rest some days/weeks to recoup enough energy to get back into positive balance.

    Balancing exercise and rest is called Pacing. Too much rest may lead to reduced heart and lung reserve, poor blood pressure control, and loss of muscle bulk and power (generally known as 'deconditioning'). Too much exercise or activity each day may increase fatigue, brain fog and general malaise.

    The first principle in energy management is to re-organise and prioritise things in your life. This may mean choosing between work, leisure pursuits, time with friends, and time for yourself to rest. Get practical help e.g. someone else to shop, clean, or child-mind. Sort out issues like school, studying, giving up work or going part time. For someone severely affected, prioritising may mean choosing between a 5 minute phone call, watching TV, or reading a book. People with ME who appear to 'have a life' - maybe working or attending college part-time - may only be able to do so by spending evenings and weekends doing nothing.

  4. Sleep management is very important. Improvement is not possible without a minimum of 5-6 hours restorative sleep. Some drugs can help, particularly an old fashioned antidepressant called amitriptyline, taken in very low dose. It is also helpful for pain and anxiety. A warm milky drink and small snack at bedtime can also help with sleep.

  5. Dealing with brain fog. Brain fatigue can disrupt life more than weak muscles. It is important to remember that overuse of the brain, such as studying, computer use, can result in a 'crash'. Brain fog can also be worsened by too much exercise. This knowledge is especially relevant to school and college students who need to pace all their activities carefully to cope. Because there may not be enough blood circulating in the brain due to a drop in blood pressure when upright, many ME people find they can think better if lying down or seated. Increase of fluid intake also helps the brain.

  6. Emotions. Depression, panic, and weepiness can be part of the illness and a sign of relapse. But the enforced losses that result from any chronic illness - e.g. job, sports, friendships - commonly lead to a period of depression, a sort of grieving. Counselling may help, also passage of time and being able to accept the changed situation. Emotional support is crucial, and believing in yourself, all help in 'coming to terms with ME'. However, true depression may need treatment, and if you or someone you know with ME has persisting low mood, becomes isolated, loses interest in everything, and has suicidal thoughts, then it's really important to seek medical help. Treating the depression does not cure ME, but may change the perception of the illness and help in coping with it. In a few cases it may be life-saving.

  7. Diet. Have a balanced diet of good fresh food, with plenty of first class protein (eggs, fish, meats cheese and pulses) and fresh vegetables and fruit. Many people with ME become nutritionally deficient because of strict exclusion diets, too much chemicalised food, or not enough proteins and fats. A strict vegetarian or vegan diet is not recommended. It is essential to have plenty of fluids (at least 3 litres a day) and to be liberal with salt. This can help low blood pressure and dizziness which is common in ME. Regular small meals help prevent low blood sugar, three to five meals a day is best.