Open Writing

Can you imagine being so tired every day of your life that it is an effort to think, move or breathe; let alone attend to such basic needs as dressing, bathing or preparing food? No matter how much sleep you get, you feel no better. Moreover, you ache from head to toe, your sense of balance becomes impaired, your head aches incessantly, you lose your short term memory and ability to think clearly and you develop digestive disturbances and intolerances to certain foods.

So you drag yourself to a doctor, who orders a battery of tests, all of which come back negative. You are subsequently sent from one medical specialist to another, none of whom can find a reason for your symptoms. You are labeled a malingerer,
a hypochondriac or psychologically disturbed. You begin to doubt your sanity, but remain intent on recovering, so you do the round of alternative therapists, none of which help.

Finally, usually after years of suffering, your condition is given the label Chronic Fatigue Syndrome (CFS). There is no cure, you are told, and although your condition may improve over time with lifestyle changes, you must live with the knowledge you will never again be able to hold down a job, or enjoy such simple pleasures as playing sport, gardening, going for a walk or spending a day in town. If you want to go out in the evening you must spend the day resting and must never contemplate going out two evenings in a row. Even visiting friends and family must be carefully regulated. Push the boundaries and you will suffer a relapse which could result in months in bed. As you can no longer keep up with your friends, one by one they drop by the wayside and you become isolated and depressed.

Welcome to the world of those who suffer from CFS, an unfortunate name for an illness which is much more than simply being tired.

There have been moves to have the name changed to something more representative of the true nature of the disorder and the acronym ME/CFS is becoming more widely used. The initials ME standing for Myalgic Encephalopathy: myalgia emphasizing the muscle pain experienced and encephalopathy noting the central nervous system abnormalities identified by researchers. The World Health Organization classifies ME/CFS as a disease of the central nervous system.

Although researchers have not been able to identify any cause for the onset of the illness, it generally follows a previous viral infection such as influenza or glandular fever, for some a traumatic incident, or a prolonged period of great stress.

There is no specific test available which identifies ME/CFS; a diagnosis is made by ruling out other illnesses.

Neither is there a cure or any specific treatment. There are however, a number of measures which can be taken to aid recovery. An avoidance of stress is essential, as is a balance of rest and light exercise. Too little exercise will result in muscle atrophy and too much will bring on a relapse. There is, a very fine line between the right amount of activity and too much. Sufferers need to learn the art of pacing themselves. Being able to accept your life has changed forever helps. Sometimes a few sessions with a psychologist can aid with the depression that comes with this realization. Getting adequate restorative sleep is also vital. Medication may be necessary to help correct the disordered sleep patterns that are common.

The 12 May each year is International ME/CFS Awareness Day aimed at educating the public as to the true nature of the disorder, dispelling discrimination and lack of understanding towards sufferers and lobbying for more research in the hope one day a cure can be found.