ME: A Life-Changing Fatigue

First Published in Clockwork Chronicle Issue 01 2014

Myalgic Encephalomyelitis (ME, or more recently, Myalgic Encephalopathy) is more commonly known as Chronic Fatigue Syndrome (CFS), and is a disabling condition affecting all types of people at all ages. ME can present in the form of severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory skills and poor concentration, though the way it affects those with it varies from person to person. Many sufferers are presented with “Brain Fog”, whereby their ability to think in an effective and logical manner is impaired. In many cases, onset is linked to a viral infection, though other triggers may include an operation or accident.  Some sufferers experience a slow, insidious onset, and stress is known to exacerbate the condition.

Despite the fact that (after many years of debate) the Department of Health now accepts ME as a genuine medical condition, diagnosis can still pose problems as many of the symptoms are similar to those of other medical conditions. Additionally, there are no examinations which can generate any findings to confirm the diagnosis. Because of this, a process of elimination has to be implemented, where all other possible conditions are investigated before a diagnosis of ME can be made.

The symptoms of ME tend to fluctuate in severity throughout the course of the day, and many sufferers report that they have both “good days” and “bad days”, although the terms are often used in a relative sense. ME nearly always results in severe reductions in a person’s ability to cope with all aspects of daily living, including social or sporting activities, employment, and even simple household tasks. Relapses or exacerbations are often brought on by infections, excessive physical or mental activity or stress, general anaesthetics and surgical operations, as well as extremes of temperature.

There is no medical treatment for ME at this point in time and many sufferers never recover from it, even with “treatment”. Sufferers are instead offered management options to coincide with the severity of their symptoms, which can include lifestyle and attitude alterations, activity management, Cognitive Behavioural Therapy to combat the mental stresses and symptoms, and Graded Exercise Therapy. Sufferers may be offered medicines such as antivirals, antidepressants, Hydrocortisone (and other hormonal treatments), immunological treatments and supplements. Some sufferers turn to Complementary Treatments, such as Acupuncture, Homoeopathy and Herbal Remedies, to help to manage their symptoms, though the ME Association does warn that many of the reports of Complementary Treatments being beneficial are anecdotal.

In the UK, the first recorded death of ME occurred in June 2006, though it has occasionally been recorded on death certificates in the US and Australia. Coroner Veronica Hamilton-Deely, Brighton and Hove Coroners Court, recorded the death of 32-year-old Sophia Mirza as “acute aneuric renal failure (failure to produce urine) due to dehydration as a result of CFS”. Ms Mirza had suffered from ME for six years.

For more information on ME, people in the UK can visit the ME Association website at http://www.meassociation.org.uk or Action for ME at http://www.actionforme.org.uk. People in the USA can visit http://www.cfids.org. Those in Australia can visit http://www.mecfs.org.au. Readers in Europe should visit http://www.euro-me.org .