ME – snapshots for professionals
Myalgic encephalomyelitis (ME) is a chronic, debilitating disease with progressive or fluctuating course. (#MEAction)
Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological clinical disorder. (Canadian p1)
Pathophysiology: Profound dysfunction/dysregulation of the neurological control system results in faulty communication and interaction between the CNS and major body systems, notably the immune and endocrine systems, dysfunction of cellular energy metabolism and ion transport, and cardiac impairments. (ICP p1)
Everyday life for people with ME/CFS, their family and carers is disrupted and
unpredictable. Many people with the condition are unemployed, and less than a fifth work full-time. Approximately 25% have severe disease and are housebound or bedbound. The quality of life of people with ME/CFS is lower than that of many people with other severe chronic conditions, including multiple sclerosis and some forms of cancer. (NICE 2021)
Post-exertional malaise (PEM) can help distinguish ME from other diseases. PEM is a significant and prolonged worsening of all symptoms after sustained physical or mental activity. It’s important to know that overexertion can damage a patient’s health, sometimes permanently – and that patients cannot be cured by gradually increasing their exercise over time. (#MEAction)
A diagnosis requires the presence of 4 symptoms, with the possibility of many more:
• Debilitating fatigue i.e. feeling flu-like with low energy and loss of muscle stamina – not significantly relieved by rest
• Post-exertional malaise aka post-exertional symptom exacerbation.
• Unrefreshing sleep or sleep disturbance (or both)
• Cognitive difficulties (sometimes described as ‘brain fog’) (NICE 2021 Box 2)
Video – Doctors discuss ME (14 mins): Introduction to ME/CFS
Video – Patients ask doctors to distinguish fatigue from ME and listen to the patient (3 mins): ME & PEM
