What is ME/CFS?

“ME/CFS is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and episodic forms.  Myalgic encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as a neurological disease in the World Health Organization’s International Classification of Diseases (ICD).  Chronic fatigue must not be confused with ME/CFS because the “fatigue” of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms.  Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological, clinical disorder.”

A Clinical Case Definition and Guidelines for Medical Practitioners by Carruthers et al,

authors of the International Consensus Criteria for ME/CFS

  • ME/CFS affects multiple systems in the body, including the immune system, nervous system, and endocrine system.
  • 250,000 people in the UK are estimated to have ME/CFS, approximately 1 million in the US, and 20 million worldwide
  • Research shows that patients have problems with their aerobic systems and that metabolic processes in patients’ cells are in a greatly slowed
  • Roughly one in four people with ME/CFS are housebound or confined to their beds
  • The key feature of the disease is that exertion beyond the patient’s ‘energy envelope’ causes a flare-up of all symptoms. In the sickest patients, this exertion can be as trivial as cleaning their teeth or trying to get out of bed.
  • A new infection or sustained over-exertion can cause a serious relapse, which can go on indefinitely. Children who were able to attend school, or adults who were able to work, can become bedbound.
  • ME/CFS has the lowest quality of life out of a wide range of diseases studied, including multiple sclerosis, chronic renal failure, lung cancer, and stroke.
  • ME/CFS patients do not wear a label of debility or illness: many patients do not ‘look’ sick.
  • The most well can work by sacrificing other aspects of their lives.  Even sicker patients may spend brief periods outside the house and appear normal for that time.  Sometimes, patients overexert in order to have brief periods of social interaction or to do necessary tasks, but may require days or weeks of bedrest to recover.

Patients are working together in the virtual world to make things better. #MEAction is a fast-growing, international, patient-led group with thousands of supporters, doing just that. Join in here.

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