Chronic Fatigue Syndrome to be Renamed
It has been proposed recently to rename Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis, to ‘Systemic Exertion Intolerance Disease”.
Despite the fact an estimated 836,000 to 2.5 million Americans living with the disorder, sufferers often struggle for years to seek a diagnosis with up to 29 percent of patients surveyed claiming it took longer than five years.
It’s been suggested that this is due to the disease being triviliased by its name – the word ‘fatigue’ implies the illness is simply tiredness, when in reality it a multi-system disability that manifests in a variety of symptoms far beyond tiredness including cognitive impairment, effecting speech and memory. Sufferers are often bedridden, unable to execute simple tasks.
Individuals with ME/CFS suffer from extreme exhaustion which is exasperated by the mildest physical or mental effort. Postexertional malaise may last weeks or months, and sleep remains unfreshing, making recovery difficult, though there is no diagnostic blood test or brain scan, which means the illness is treated with some degree of skepticism.
Suzanne Vernon, the scientific director from Solve ME/CFS Initiative has commented saying “A new name will be very important for really legitimizing this debilitating disease that for too long has just been marginalized because of a very inappropriate name”.
Currently there is no requirement for a disease name to reflect any scientific accuracy. Myalgic encephalomyelitis was coined several decades ago, though has been determined to be not an accurate description, as there is little evidence of ‘brain and spinal cord inflammation’. This inaccuracy furthers the misunderstanding of the disease.