ME/CFS Fundamentals
  • ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a variable condition that is characterized by a range of neurological, endocrine, central nervous system, immune and cognitive disturbances.
  • The cardinal or hallmark symptom is post-exertional malaise; a period of illness that manifests itself like a viral infection. This period of increased debility may onset up to 48 hours after even minor physical or mental exertion, and can last for more than 24 hours. Sufferers may find themselves in a continuous loop of activity and ill-health and may not be able to pinpoint the exact action that caused the relapse. Actions need not be strenuous and may be something as simple as reading a book or talking to a friend on the phone.
  • ME/CFS can range in severity from mild through moderate to severe. Some patients are still able to work but may have to reduce their hours, alter their duties or even change job – some are largely housebound and may need wheelchairs to get around – approximately 25% are so  severely-affected they may not be able sit up in bed, speak or swallow and may need to be tube-fed. It is not uncommon for sufferers to experience seizures or paralysis.
  • ME/CFS should not be confused with chronic fatigue, which is a symptom of many different illnesses.
  • ME has been listed as a neurological disease by the World Health Organization since 1969 in the International Classification of Disease: ICD-10:G93.3: Post-Viral Fatigue Syndrome – Benign Myalgic Encephalomyelitis.  The term Chronic Fatigue Syndrome is listed in the Alphabetical Index with a reference back to ICD-10 G.93.3.
  • Anyone can contract ME/CFS at any time. It most commonly occurs in a sporadic form but there have been epidemic cases, such as the outbreak in the Royal Free Hospital, London, 1955 and Incline Village, Nevada, in the early 1980s.
  • ME/CFS affects children as young as 2 years of age. Research has shown it to be the biggest cause of long-term absence from school in the UK. For more information about children with ME/CFS, contact The Young ME Sufferers Trust.
  • The number of ME/CFS sufferers is estimated to be 17 million worldwide; approximately 250,000 in the UK. The government does not collect data on the numbers affected, so this figure may differ in reality. The Health Service Primary Care Trusts (PCTs) could collect this information from GPs through the READ Code system, if they so desired.
  • At present, there is no cure. Current therapies are aimed at relieving only a few of the symptoms. Most of the biological repercussions remain untreated.
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