May 12 is international Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS) day. The aim is to increase awareness and research into the diseases. There is approximately 250,000 Australians living with ME/CFS with approximately a quarter of these affected so severely they are house or even bed-bound. Internationally there is estimated to be approximately 17 million diagnosed with the disease. With such a high number of people living with the disease, it is still so regularly misunderstood and the stigma of the syndrome presents even more barriers, especially in the workplace.
Myalgic Encephalomyelitis (M.E.) is a chronic, fluctuating, neurological illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems. People with M.E. experience severe, persistent fatigue associated with post-exertional malaise, the body’s inability to recover after expending even small amounts of energy, leading to a flare-up in symptoms.
Severe and persistent fatigue or exhaustion most, or all of the time, is one of the main symptoms of M.E. This feels very different from ordinary tiredness. Simple physical or mental activities, or combinations of activities, can leave people with M.E. feeling utterly debilitated. They can also experience an increase in other symptoms.
Everyone who experiences M.E. has a different pattern of illness, and symptoms and severity can fluctuate and change over time.
Pain may manifest as aching muscles or joints, nerve pains or pins and needles, headache or migraine, twitching muscles or cramps. There may be abdominal pain, stomach or bowel problems.
Cognitive difficulties may include reduced attention span, short-term memory problems, word-finding difficulties, inability to plan or organise thoughts or loss of concentration – often described by people with M.E. as ‘brain fog.’
The illness may affect mood and people with M.E. can also experience poor temperature control, loss of balance, dizziness on standing up, hypersensitivity to light, sound, odours, certain foods, some medications, alcohol and other substances.